Limb Lengthening Forum

Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: fivetenneeded2016 on April 25, 2018, 08:02:57 PM

Title: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 25, 2018, 08:02:57 PM
Hi all, I have my surgery tomorrow with Dr Pili. I would keep the diary updated once or twice every week, providing the synopsis to aspiring LLers, and at times(most times :p) seeking your support, and of-course, guidance from the veterans. And thanks to all for having such a community.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on April 25, 2018, 08:07:44 PM
Awesome, FTN!! I hope your surgery and first few weeks go as smoothly and as painlessly as it is possible within the realities of CLL.

Best of luck to you and your legs throughout the whole process.
Title: Re: My Journey with Dr Pili(HEF)
Post by: onemorefoot on April 25, 2018, 08:45:02 PM
Good choice, I Hope the BEST for you during this process.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 25, 2018, 08:48:51 PM
Background

I made my mind to get this surgery, ever since I started working, and therefore the username.
Like any other beginner I had Dr Paley, Dr Guichet, Dr Betz, etc on my list. But then, once when I hit the reality, I thought of limiting myself to tibias, and I started to think of Dr. Pili/Catagni, Dr Barinov, Dr Xia and Dr Parihar.
And last year, if you check my post, I had thought of getting it done then, with Dr. Parihar. But due to personal and financial reasons, I thought of deferring the surgery.

Since it was in back of head for so long, I was unable to focus much at work. I used to think of it almost all times. I used to read the forum daily, the first thing in the morning before I go to work and just after I reach home from work.

Since it had started to affect my work offlate, I finally thought this year, in the beginning, to confirm my dates with Dr Pili after narrowing upon the surgeon. I was really excited after booking my slot. I trained my upper body a bit and my calfs and achilles.

T -7(circa)
Having come to a new country, with no prior exposure to the western world, the first few days I was in awe with the life and the environment here. I went to the hospital the day after I arrived. Dr Pili measured my calfs to decide on the frsmes to use. Later, as I got out, just on the road beside, I saw Dr Catagni on his white Lamborgini. I dont know why but I felt like I pictured him that way before..it was like Deja-Vu, Lol. I was super excited as I would be striking off the top item from my bucketlist in a few more days.

I still need to work with the embassy for extending my visa. I plan to fly back in a week post surgery(If I can just about manage, then I would go back and visit here monthly, but for plan b, I also have funds to stay here for few months). These are some of my concerns currrently.

T -1
I still have my visa to be extended, some prior tests to be done before the surgery. I was assured it would all be taken care of tomorrow.
Currently, I just got back from my last(well, for quite many months :/) normal supper on my free and perfect legs. As I walked I thought to myself, this moment, that I am walking so well, I would miss for a long time. That moment of thought gave me a pinch of anxiety. But still I hope all goes well tomorrow.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 25, 2018, 09:41:14 PM
Thanks a lot, MyLoginAccount and OneMoreFoot :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on April 25, 2018, 09:58:23 PM
Excellent start! Looking forward to your future success.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Body Builder on April 25, 2018, 10:11:54 PM
Hi all, I have my surgery tomorrow with Dr Pili. I would keep the diary updated once or twice every week, providing the synopsis to aspiring LLers, and at times(most times :p) seeking your support, and of-course, guidance from the veterans. And thanks to all for having such a community.
Ι am here to help you.
Good luck and keep strong!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 27, 2018, 09:00:18 AM
Thanks, Android and BodyBuilder.
I would definitely need your advices. I am done with my surgery. Currently no pain..except a bit of heavyness on my left leg. I am on no painkillers/IV. I feel Dr catagni too operated, as I saw him too in the OT. There was pain, but only immideately after sugery. Had a good sleep as well. To those who would like to see the photos, I would update it send the link on PM, after I have uploaded.

Only problem i my left leg is not completely staright as my right. Although I expected the opposite, as I previously had ACL on my right knee.
But the doctor said it would go away as i learn to walk, which they would teach today on cructhes.
Hope all goes well.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 27, 2018, 10:36:53 AM
some pics of the ambience
https://imgur.com/gallery/LyMjOxg
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 27, 2018, 01:14:57 PM
took my first steps today on a walker..i can lift my legs up quite well. my left leg too feels better than it eas this morning.

next to me lives a family, who are doing it for their second son..he too got his surgery yesterday. Their first son did 9cm +ATL last year. They say he is doing well. swimming/jogging etc.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Argent_Lecter on April 27, 2018, 05:11:09 PM
Hello there,

This is a really nice diary and I'm hoping to do my surgery with Pili on 2021 or so. I have a few questions about the accommodation. How much do you pay for it? and in case of an emergency who do you need to call? are you by yourself or do you have a nurse taking care of you? It would really help me if you answer my doubts. Anyway I hope you are recovering fast, my friend.  ;)

Take care.

- A. Lecter
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 27, 2018, 05:29:13 PM
Hello there,

This is a really nice diary and I'm hoping to do my surgery with Pili on 2021 or so. I have a few questions about the accommodation. How much do you pay for it? and in case of an emergency who do you need to call? are you by yourself or do you have a nurse taking care of you? It would really help me if you answer my doubts. Anyway I hope you are recovering fast, my friend.  ;)

Take care.

- A. Lecter
Hey buddy, I had around 30k€ circa. I , initally for the visa, had booked a room for 700€ circa for 10 days. My dad is coming tomrrow to accompany me. For help in hospital you have a button to call the nurse. But I feel you can do it yourself too..depends actually, better to take a help worst case.

costs
The surgery costed 20k€(19.something) which included 2-3 days stay. I would leave tomorrow to my hotel. In case I need to extend my stay i have some cash reserve. If you do it in Lecco, find a local, or a student, they say the cost of living in sharing is around 300-400€, double it, you would have food too included. So 800€ per month..round it to 1k€ and assume uou stay for 5 months, it would total to 25k€ and add another 5k€(upper limit) for ATL if you require. So 30k€ should suffice.

I am doing fine. I walked today..like 15-20 steps, first on walker and then on crutches. Dr even made a video. But now its starting to hurt :(
Lets see.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Argent_Lecter on April 27, 2018, 05:38:04 PM
Hey buddy, I had around 30k€ circa. I , initally for the visa, had booked a room for 700€ circa for 10 days. My dad is coming tomrrow to accompany me. For help in hospital you have a button to call the nurse. But I feel you can do it yourself too..depends actually, better to take a help worst case.

costs
The surgery costed 20k€(19.something) which included 2-3 days stay. I would leave tomorrow to my hotel. In case I need to extend my stay i have some cash reserve. If you do it in Lecco, find a local, or a student, they say the cost of living in sharing is around 300-400€, double it, you would have food too included. So 800€ per month..round it to 1k€ and assume uou stay for 5 months, it would total to 25k€ and add another 5k€(upper limit) for ATL if you require. So 30k€ should suffice.

I am doing fine. I walked today..like 15-20 steps, first on walker and then on crutches. Dr even made a video. But now its starting to hurt :(
Lets see.

Thanks for the reply man!

Okay, I assumed it would be around 30K € which is fine to me and I'm going by myself so I guess I'd share room with a student.

Btw can I PM you?

- A. Lecter
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 27, 2018, 06:25:20 PM
sure man
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 28, 2018, 08:50:07 AM
Just a quick update, I got the discharge letter from the hospital and I can leave tomorrow or today. I would start lengthening from 10th May. i can keep my legs straight, bend them like sitting on a chair and walk a bit on crutches. Might stay here a couple more days though.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 28, 2018, 10:33:35 AM
frames
http://imgur.com/gallery/uNeVG7d
Title: Re: My Journey with Dr Pili(HEF)
Post by: Argent_Lecter on April 28, 2018, 07:51:59 PM
frames
http://imgur.com/gallery/uNeVG7d

Man, those frames look good and study! Keep updating it would be nice to see more of your journey. Take care buddy.

- A. Lecter
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on April 28, 2018, 08:03:34 PM
Man, those frames look good and study!

Some may even say they look... HEFty.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 28, 2018, 08:04:38 PM
haha yea they are bulky...any suggestion on what to wear to conceal it? I plan to go back to work(desk job) next month.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 28, 2018, 08:06:39 PM
Some may even say they look... HEFty.
One thing, for sure, they are weight bearing but. I am circa 55kgs. but i can walk moderately well now. and times when i had to leave the crutches, like moving to bed entering a car, even then i feel confident on these.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on April 28, 2018, 08:21:21 PM
Also, how was the discussion about your lengthening goals with Dr. Pili? Is he attentive, realistic? I think it's these little details that have been left from the previous Pili/Catagni diaries. The patients all seemed to have had good results and never came back to the forum (so they could reply), either.

Thanks for any help, FTN!

Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 28, 2018, 09:03:59 PM
Also, how was the discussion about your lengthening goals with Dr. Pili? Is he attentive, realistic? I think it's these little details that have been left from the previous Pili/Catagni diaries. The patients all seemed to have had good results and never came back to the forum (so they could reply), either.

Thanks for any help, FTN!
I personally, face to face, spoke barely much with dr Pili. We cleared most stuff over mails. First time I met him, he just took the sizes for my crutch. Even most of their tests were no-nonsense types. On the day of surgery, they took the xrays and blood tests and in 1-2 hours I was in for surgery. Right now, I have  an issue with my visa, that he said he is looking upon.

All i could say is, they are very precise, and they dont waste time in repeating/explaining.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 28, 2018, 09:04:56 PM
took the sizes for my crutch.
*frames
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on April 29, 2018, 06:33:38 AM
haha yea they are bulky...any suggestion on what to wear to conceal it? I plan to go back to work(desk job) next month.

Some people have custom covers made, like (http://jesse-doty.squarespace.com/activity/) this and this (http://www.ilizarov.org.uk/dressing.htm). Not many make a finished product, but here's one (http://www.beagleorthopaedic.com/products/knees/Ilizarovframecover), and it's not cheap. You can also opt for Thai trousers (http://a.co/ir0mvC6), basically loose-legged pants.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Rocky on April 29, 2018, 03:35:09 PM
Hi fivetenneeded2016

I can see that we started LL almost at the same time. I really wish you wholehearted all the best and may all wishes become true. Keep strong  :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 29, 2018, 04:27:57 PM
Hi fivetenneeded2016

I can see that we started LL almost at the same time. I really wish you wholehearted all the best and may all wishes become true. Keep strong  :)
Hey buddy, coincidently, yes. We were operated on the same day and discharged too the same day. Good you chose femurs and chose stay. I would fly back once my Visa issue is fixed. Hope all goes well eith you. All the best. You can PM me, so we can share the ups and downs :).
Good luck :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: Life on April 30, 2018, 12:08:00 AM
Funny! You can create a magic bond. Hope you both have a smooth experience.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 30, 2018, 08:45:52 AM
update: flexibilty and ease kind of reduced as I have been experiencing pain(little pain but constant). I try to restrict painkiller intake to once a day(before i sleep)
currently having burning sensation at mid tibia oon right leg. No there are no pins/screws/stitch on that point exactly. Could anyone reason out why? and solution? I mailed Dr Pili. awaiting his response.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on April 30, 2018, 11:46:34 AM
update: flexibilty and ease kind of reduced as I have been experiencing pain(little pain but constant). I try to restrict painkiller intake to once a day(before i sleep)
currently having burning sensation at mid tibia oon right leg. No there are no pins/screws/stitch on that point exactly. Could anyone reason out why? and solution? I mailed Dr Pili. awaiting his response.

How many hours of sleep have you been getting since your surgery? I know you're not lengthening yet, but just curious.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on April 30, 2018, 01:14:08 PM
How many hours of sleep have you been getting since your surgery? I know you're not lengthening yet, but just curious.
I take a painkiller 15 mins before sleep so i sleep well :). only thing is from evening i start lying down, which is why i wake up due to back pain. Leg only pain while sleeping, if i dont take painkillers.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Rocky on April 30, 2018, 05:24:45 PM
Hey buddy. Yeah, it is funny we began the same time. I have been getting those pain killer injections every 5 hours. I have been sleeping all the time. Just sleep and watch Netflex. The doctor gave instructions to reduce it to 2 injections now. I don't feel that sleepy like in the beginning. How is your condition now?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 01, 2018, 04:21:22 PM
A quick update:
I realised if i increased my painkillers(2 times a day, 0.5mg co-efferalgan,...from once a day), i could do more walking and much more comfortably.
Today I had almost zero pain after my day painkiller intake.
Here is a video of my walking on crutches. Only point of discomfort while walking is my palms are getting hurt by the crutch.
i can walk for 20 mins without much effort at a stretch. Totally i walk 40 mins in 2 sets.

https://youtu.be/KQXSnI8nKyM
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on May 01, 2018, 06:16:28 PM
Looking good! Maybe you can wrap the handles with small towel and tape it up.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on May 01, 2018, 07:03:06 PM
Thank you for recording the video. Even x-rays have been harder to come by in recent diaries. Videos are very precious.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Argent_Lecter on May 03, 2018, 02:54:52 AM
Hi buddy, you're looking good in that vid! you can use small towels as android said to keep the crutches to hurting you. Keep going man.  8)

- A. Lecter
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 05, 2018, 02:37:58 PM
Update

I have got back to my country a few days back. It was a very tiring and uncomortable journey back home. My legs(specially the ankles and feet) swole up  like balloons.

Now it it much better. Walking is much better too. I am managing by myself. If all goes well, I am planning to resume my work too next week(desk job, so not an issue). Dr too said it should be fine as long as i stretch/excercise frequently. I stretch and do some walk/excercise every 1-2 hours for 15 mins.
Also I do not take painkillers anymore.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on May 05, 2018, 03:58:02 PM
Wow, no painkillers?

And what did Dr. Pili say about the possibility of pin-site infections? You're (probably) very far away from him now. Did he worry about that? What was his advice to you regarding that?

How often, and how, are you cleaning your pin-sites?

For a final question: did you get any good idea of what was the (medical) relationship between Pili and Catagni during your stay in Italy? We are quite curious about that.

Thanks a lot, FTN.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 05, 2018, 04:48:56 PM
Wow, no painkillers?

And what did Dr. Pili say about the possibility of pin-site infections? You're (probably) very far away from him now. Did he worry about that? What was his advice to you regarding that?

How often, and how, are you cleaning your pin-sites?

For a final question: did you get any good idea of what was the (medical) relationship between Pili and Catagni during your stay in Italy? We are quite curious about that.

Thanks a lot, FTN.
No pain..only mild pain(for a second that too.. if i pull my muscle wrong or after sleeping and getting up).
Since my country's currency is very low against dollar, only way that I afford all this is if i work. So cant leave my work for long. Dr Pili was fine with it, given i visit him monthly.

Dr Pili and Catagni indeed work very closely. Pili has his pic in his clinic. And I feel Dr Catagni too operates out of lecco mostly. On the letter of discharge, his signature mentions his practices in Lecco and Rome. Dr Catagni too was there for my surgery. I only saw him in the OT and once on a road on his white lamborgini/ferrari :p

For Pin site care we are given a manual. I change my bandages(gauze) every other day using h2o2 and betadiene.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 05, 2018, 04:50:38 PM
and again, regarding pin site, so far all is good *fingers crossed*. No blood no puss no infection. Lets pray.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on May 08, 2018, 05:47:49 PM
I hope you'll be one of the 50% who don't get any pin-site infections!

A center in Russia does their cleaning with a betadine solution with alcohol. Sounds very similar to what you described.

By the way, two questions that I wanted to ask, if you don't mind:


I hope you've been doing as good as you can be doing during LL, FTN.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 08, 2018, 06:03:15 PM
Hey, a quick update..day 12.
I started work this week(desk job). I work for 8-10 hours at the office with moderate feet movement hourly. I am by myself now. I cook, wash my clothes/dishes, get my groceries, all by myslef. I have started to walk for 2km circa daily. No pain, no meds. Only sometimes swellings on the feet/ankles. I wonder how long would swelling keep appearing. The swelling goes away after a goodnight sleep. Yeah, and I sleep undisturbed 8-9 hours. my foot movement is good. except the left foot(ankle movement) where the swelling appears. Overall I am good. I am able to bend my knee till the frames touch my thighs.
Only excercise I find hard is the hamstring ones from this site:(#2)

i have tried other excercises/cycling but i am unable to do this one even now
:(


the second one

https://drpiliortopedico.it/esercizi-postura-e-estensione-gambe-con-fissatore/
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 08, 2018, 07:29:22 PM
any advice on how to manage the ankle/feet swelling?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 08, 2018, 07:53:11 PM
I hope you'll be one of the 50% who don't get any pin-site infections!

A center in Russia does their cleaning with a betadine solution with alcohol. Sounds very similar to what you described.

By the way, two questions that I wanted to ask, if you don't mind:

  • Did you do a CT scan before the surgeries (not plain x-rays)? Does that seem to be the standard procedure for CLL?
  • How are you advised to take showers, considering the external fixators you have on?

I hope you've been doing as good as you can be doing during LL, FTN.
sorry i forgot to answer your questions:
no CT scan..just x-rays and blood work..dont ask me what all they checked in the blood, i dont have the reports myself. also, due to my visa issue going last minute, my tests were hurried up too..blood work and xrays all in 2-3 hours.

showers i can after the stitch removal. Dr Pili even said swimming pool walking fine(i asked, as i saw hydro therapy as a rehab tool) as long as chlorinated.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 13, 2018, 08:15:51 AM
Update
I am day 17 post op and day 4 since lengthening. Would reach 3mm today. Still going to work, no problem in focusing at work. Although legs get swelled up. Apparently its my left leg that swells up more. I take lasix(furosemide) diuretic, 1 tablet split twice a day. I can see water ooze out of my right leg lower screw(which is why it swells less perhaps). Mild to over moderate swelling throughout the day(normally after 1 hour if legs are down or 20-30 mins of walking). However, it deflates the next day when I wake up.
I bike on a stationary cycle for about 15 mins and walk for 1 hour apart from regular chores like cooking, grocery, washing my clothes etc.
Regarding pain, its only at the swelled up left leg at certain angles. Not too bad though. Still no pain killers.
If anyone knows why its the left leg that swells up more, please let me know. I am still awaiting a response from Dr Pili. Also any tips for reducing the swelling(other than icepack, reducing salt, diuretic, elevating legs) would be appreciated too :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: Great321 on May 13, 2018, 09:18:01 AM
Thanks for the udate!

What do your colleagues know about your frames?
Title: Re: My Journey with Dr Pili(HEF)
Post by: Knik on May 13, 2018, 12:41:39 PM
great diary
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 13, 2018, 01:39:41 PM
Thanks for the udate!

What do your colleagues know about your frames?
Initially I had thought of lying, but I have told them the truth. They are cool. Personal matters are kept aside. Doest matter as long as you can work.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 13, 2018, 01:59:15 PM
Although I have no pain and preety decent mobility, I have my own difficulties. Dr Pili is yet to reply :/

http://imgur.com/gallery/b29SKtD (right leg screw where i get the water oozing)
http://imgur.com/gallery/NxCp8Rk (left leg swollen)
Title: Re: My Journey with Dr Pili(HEF)
Post by: angel3894 on May 14, 2018, 04:23:35 AM
How much cm will you want to do?
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on May 17, 2018, 06:41:35 AM
Dr Pili is yet to reply :/

Have you received a reply about your swollen leg yet?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 17, 2018, 08:06:56 AM
Have you received a reply about your swollen leg yet?
Hey Android, I did receive the reply, although 4-5 days after I had asked. He said its normal. Now the swelling has reduced though. As an update:
I am currently at 6mm today(in few hours though, currently 5.75mm ;P)
Work is going as usual, pretty much back at regular routine. Only thing I am worried about is ATL, I really would want to avoid that one. :/ Oh and could anyone tell me if its possible to climb stairs using crutches during tibial lengthening/(non consolidated)? videos/tutorials would be great. I did see Unicorn's insta post of her climbing the stairs at the beach, but she has a leg consolidated and has done her femurs.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 23, 2018, 09:57:23 AM
Update(day 13 since lengthening, day 27 post op):

Stats:
No pain, reached my first cm. Pretty much back to normal life expect that I walk on crutches. Walking is much faster though.

Concerns:
1. There is almost constant water(watery, clear transparent liquid) oozing from one of my distal screws on the right foot.  This is specially after walking/weight bearing. I had gone for swab culture test to check for infection, which came out negative. Took precautionary antibiotics course too, which I do not think helped much. Dr Pili and my local Doctor too said its normal. But the other patient who had the surgery with me, has no such symptoms. Neither have I read such a thing on other diaries. Anyone read of such experience? Also any suggestion to avoid the ooze?
I currently wipe it with Betadiene and change my bandage on that screw each time it gets soggy.

2. The footholders get a little uncomfortable wearing at nights. So i lightly adjust it to reduce the tension.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on May 23, 2018, 10:07:41 AM
Thanks for the update, FTN!

Still sleeping those undisturbed 8-9 hours?

And I'm a bit slow: could you clarify the situation with your visa in Italy a bit more? Are you still in Italy or did you go back to your home country?

Wishing you the best.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 23, 2018, 10:10:55 AM
Thanks for the update, FTN!

Still sleeping those undisturbed 8-9 hours?

And I'm a bit slow: could you clarify the situation with your visa in Italy a bit more? Are you still in Italy or did you go back to your home country?

Wishing you the best.
Yes, I am sleeping for 8-9 hours. Only thing is sometimes I wished I could sleep on my sides :/.
I am back to my country and have applied for a visa for longer duration so I could have the appointment with Dr Pili every month.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacct on May 23, 2018, 10:17:08 AM
Yes, I am sleeping for 8-9 hours.
I am back to my country and have applied for a visa for longer duration so I could have the appointment with Dr Pili every month.

Awesome to hear about the sleep.

I hope everything goes smoothly with the visa process.

I also hope that ooze is nothing of concern.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 23, 2018, 10:20:53 AM
Awesome to hear about the sleep.

I hope everything goes smoothly with the visa process.

I also hope that ooze is nothing of concern.
Only concern I have with the ooze thingy is that I need to frequently change my dressing around that pin. And when I am out and it gets soggy, I remove the dressing and leave it open for sometime. That small time window is enough to wet my slippers :/. Basically I would require to carry spare dressings each time I go out.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Great321 on May 23, 2018, 11:31:31 AM
Maybe that's lymph fluid ?

Because lymph fluid causes swelling, so the leg where no oozing is happening is swollen (your body will process the lymph fluid by itself with time) while the leg where the lymph fluid oozes is not swollen.

What did Dr. Pili say?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 23, 2018, 11:49:41 AM
Maybe that's lymph fluid ?

Because lymph fluid causes swelling, so the leg where no oozing is happening is swollen (your body will process the lymph fluid by itself with time) while the leg where the lymph fluid oozes is not swollen.

What did Dr. Pili say?
Could be, but I have not heard any other external tibial patient talking about oozing. BigFaker from the old forum had some oozing but I dont think it lasted 2 weeks(in my case).
Dr Pili said its normal.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on May 23, 2018, 06:48:26 PM
Thanks for the update! If two doctors are saying it's OK, I'd just deal with the inconvenience and not worry too much about it.

Great to hear that you're well rested. Keep it up!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on May 28, 2018, 07:16:08 PM
Update(day 18 since lengthening, day 34 post op):

Stats:
No pain, reached 1.5cm approx.
Misc:
Pinsite oozing has stopped. Swelling is 80-90% reduced, that too only after I walk for like 2km. Otherwise no swelling too. Hope I could maintain and improve my flexibility specially around ankles, and avoid ATL. *Fingers Crossed*.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 06, 2018, 02:31:02 PM
Update:(day 27 post lengthening and 43 days post:
the bads: I have lazed around the entire week with regards to replacing bandages and excercising. My dorsiflexion has reduced a good amount, a couple of my pin sites looked bad(some discharge). I have restarted antibiotics and daily changing of bandages. I am also starting to excercise more frequent.

To the future external tibial LLers, Change your bandages whenever you sweat a bit too much. Although it was only 4 days since I last changed(i was told to change it biweekly, so 4 days should not have been an issue), i could attribute the bad pinsites to humidity, and sweating. Its a little bit better now. The thick pins from the mid tibia and downwards were most affected.

I hope, I could get back to 10days ago version of myself :/.

PS. I have turned 2.1cm so far, not noticeable yet though :/
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacc on June 19, 2018, 12:46:14 AM
It's been a little while.

How are you doing, FTN?

I hope things are well.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 07:00:33 AM
update: 58 days post op/ 44 days since lengthening
gain: 3.3cm, xrays taken at 3.2 which measured ~3cm actual.
goods: Met Dr Pili, my xrays showed decent callous and my mobility is still good.
bads: A few pin sites were not so clean, was suggested to bathe with a clorine compound(euclorina) and follow the regular cleanups. I feel a bit of knee bending already, specially on left leg. Any tips/excercises would be greatly appreciated. Also Dr Pili mentions I have started to develop mild equinus, mostly require undergo ATL next month.

Would upload the xrays soon.

@former LLers/current LLers, Please help me with some video links for knee bending and equinus while on frames. Almost all videos on youtube seem not posible/risky to perform with Ex frames.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Great321 on June 23, 2018, 08:34:03 AM
Hey ftn, congrats for your 3cm:)

I'm happy that the oozing and swelling problem has stopped!  What is this knee bending thing?

My surgery with Dr. Giotikas is in October. I'm a bit nervous now. Can you please answer a few questions?
- What are the most difficult things to do with frames in your everyday life?
- Is it possible to climb a few staircase steps?
- How long do you have to wear the frames in total and will you have to walk with crutches the whole time until then?
- Do you go outside with the frames a lot, if yes, how do strangers/people you know react and what do you tell them?

Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 08:45:43 AM
Hey ftn, congrats for your 3cm:)

I'm happy that the oozing and swelling problem has stopped!  What is this knee bending thing?

My surgery with Dr. Giotikas is in October. I'm a bit nervous now. Can you please answer a few questions?
- What are the most difficult things to do with frames in your everyday life?
- Is it possible to climb a few staircase steps?
- How long do you have to wear the frames in total and will you have to walk with crutches the whole time until then?
- Do you go outside with the frames a lot, if yes, how do strangers/people you know react and what do you tell them?
Thanks, buddy. I do have swelling though..on feet not ankles now.
Knee bending is when you cant straighten the legs fully around the knee.
difficult things: having to deal with swelling after you sit for long...and sleeping with legs stright, sometimes there is pain that wakes you up.
climbing stairs is doable..i climb a lot of stairs myself.
I would wear 2months extra to avoid subsidence..so for another 12 months, assuming normal consolidation.
People stare when you are doing externals, you would get used to it eventually.
Good luck with your surgery.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 08:51:24 AM
xrays:
http://imgur.com/gallery/zHKjStf
pardon the lighting, i dont know if you can see the callous cloud.

regarding why I dont post much pics these days, coz there is not much difference. Would post a video and pic after ATL when I do it if totally required. But if I post anything that reveals my body/clothes) I would delete em soon too. Xrays would remain though, or something I dont find as a source of identity :p
Title: Re: My Journey with Dr Pili(HEF)
Post by: Great321 on June 23, 2018, 08:58:55 AM
Thanks, buddy. I do have swelling though..on feet not ankles now.

what does Dr. Pili say about the swelling? Is there a way to treat this?
Quote
Knee bending is when you cant straighten the legs fully around the knee.
Have you contacted Dr. Pili about the knee bending?

Quote
difficult things: having to deal with swelling after you sti for ling...and sleeping with legs stright, sometimes there is pain that wakes you up.
How bad is the pain so far? Do you have to take a lot of pain killers and for how long can you normally sleep?

Quote
climbing stairs is doable..i climb a lot of stairs myself.
When you climb stairs or just walk with crutches are you very cautious to not put too much weight on your feet or are you allowed to put weight on your feet for a short time? Do the crutches mostly help for not falling down? Or are they actually there to prevent you from putting your whole weight on your feet? I'm just wondering since the frames are advertised as full weight bearing.

Quote
I would wear 2months extra to avoid subsidence..so for another 12 months, assuming normal consolidation.
People stare when you are doing externals, you would get used to it eventually.
Good luck with your surgery.
12 months in total or 12 months on top of for example 7 months...so in total 19months with frames? How much do you want to lengthen again?
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacc on June 23, 2018, 09:01:30 AM
xrays:
http://imgur.com/gallery/zHKjStf
pardon the lighting, i dont know if you can see the callous cloud.

regarding why I dont post much pics these days, coz there is not much difference. Would post a video and pic after ATL when I do it if totally required. But I would delete em soon too :p

That's okay. A few of us can watch them and attest they were there at some point in this diary.

Thanks for your contributions, and I hope you can get the bending and ankle problems solved without ATL.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 10:04:54 AM
what does Dr. Pili say about the swelling? Is there a way to treat this?Have you contacted Dr. Pili about the knee bending?
How bad is the pain so far? Do you have to take a lot of pain killers and for how long can you normally sleep?
When you climb stairs or just walk with crutches are you very cautious to not put too much weight on your feet or are you allowed to put weight on your feet for a short time? Do the crutches mostly help for not falling down? Or are they actually there to prevent you from putting your whole weight on your feet? I'm just wondering since the frames are advertised as full weight bearing.
12 months in total or 12 months on top of for example 7 months...so in total 19months with frames? How much do you want to lengthen again?
1. Dr pili said swelling is normal. to treat it we must elevate our legs. However, another patient under Pili who has a PT suggested a massgae technique which i would try to reduce the swelling quickly.
2. Knee bending is due to tightness in achilles tendon.
3. Sleep is fine, no pain no painekillers in day. only at night while sleeping there is pain which wakes you up. I try to sleep for 7 hours atleast, undistrubed. the key while sleeping is not to keep the legs straight i found. otherwise it pains a lot.
4. while climbing stairs I keep on crutch on the next step, put my full body weight on that as i bring the other foot to that stair. only weight bearing part i leverage is while wahsing both hands on a basin, while keeping the crutches aside.
5. i meant if my dovtor says i can take my frames offI would take it off 2 months later.
6. I would lengthen as much as I can till my doctor permits after checkups.
Title: Re: My Journey with Dr Pili(HEF)
Post by: totallyred on June 23, 2018, 10:19:10 AM
How do you manage to go to office..in specifics:-
-do you take a bath regularly?
-do you use a cab for pick up and drop?
-do you use wheelchair apart from crutches? Is it possible to use only wheelchair?
-what if your team goes on outings?
- what if you have to go to meet outside client?
-what if you have to meet your manager?
-do you lengthen while being in office?
-you must be taking medications multiple times in a day is it possible to do it there?
-what about PT there?
- how much do you walk per day in total?
- has your doctor given any advice regarding office going?
-your manager look at you with  sympathy or otherwise?
-can you work without any issues I mean as you did during your preCLL phase?

A lot of questions I know, if you could answer it would help future CLLers a lot. Thanks in advance?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 10:25:25 AM
How do you manage to go to office..in specifics:-
-do you take a bath regularly?
once in 2-3 days
-do you use a cab for pick up and drop?
yes
-do you use wheelchair apart from crutches? Is it possible to use only wheelchair?
i dont use wheelchair anywhere excpet in airport to skip the queue ;). Dr pili did not say you require wheelchair. IMO weight bearing is key to recovery
-what if your team goes on outings?
If its like lunch/dinner I go along else I skip if it involves outdoor sports
- what if you have to go to meet outside client?
I dont
-what if you have to meet your manager?
Manager knows I had an operation, not the exact cause though ;)
-do you lengthen while being in office?
I lengthen when I goto the washroom ;)
-you must be taking medications multiple times in a day is it possible to do it there?
I do not take painkillers at all
-what about PT there?
I do not get time at work to do excercise. Probably why my flexibilty reduced. If you can afford to take lesve while lengthening I would suggest you do that and focus more on your own self.
- how much do you walk per day in total?
2-3 km or 1 hour in total
- has your doctor given any advice regarding office going?
nothing, he told to walk frequently, I do that when I get time ;)
-your manager look at you with  sympathy or otherwise?
A bit may be.
-can you work without any issues I mean as you did during your preCLL phase?
Yes.
A lot of questions I know, if you could answer it would help future CLLers a lot. Thanks in advance?
Find my answers inline in italics ;)
Title: Re: My Journey with Dr Pili(HEF)
Post by: totallyred on June 23, 2018, 10:37:56 AM
Find my answers inline in italics ;)
A hearty thanks...If you could please specify..
- with crutches can you walk at normal speed or even half of the normal speed?
-at any point did you feel that you'll hurt yourself due to misalignment etc of crutches?if yes how often?
- in your x ray the callus was quite transparent, it is supposed to be so?

Wish you a very good recovery and thanks!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 10:48:59 AM
A hearty thanks...If you could please specify..
- with crutches can you walk at normal speed or even half of the normal speed?
it depends on the state of motion prior to walking...if you were sitting/lying down for long time you walk very slow for first 100 steps may be...but in general you can walk from .4x-.7x speed of a normal person
-at any point did you feel that you'll hurt yourself due to misalignment etc of crutches?if yes how often?
No, may be sometime initally, at times you feel the bones touch(even now i feel like parts touch as i walk) but the misalignments can be corrected.
- in your x ray the callus was quite transparent, it is supposed to be so?
I guess so, Dr. Pili was happy with my callous formation. I guess it becomes more opaque over time.
Wish you a very good recovery and thanks!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fokid on June 23, 2018, 01:18:40 PM
u r a badass dude! ;)
ur x-rays look solid. congrats. external tibias look very temtping. apart from the need for ATL which i hope does not lead to complications and having to wear frames for months you are able to live a normal life while lengthening.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 23, 2018, 03:53:26 PM
u r a badass dude! ;)
ur x-rays look solid. congrats. external tibias look very temtping. apart from the need for ATL which i hope does not lead to complications and having to wear frames for months you are able to live a normal life while lengthening.

Thanks man, I feel encouraged more. ;) I don't know how normal it would be after ATL. Although Dr Pili said having the pins for ATL would make it much easier for walking, and I could walk my way out and fly back after a day the surgery, I have heard that the surgery is the real pain. But again, living as normal is the key to recovery, ATL would release the tightness i feel these days. And to others, I would get the ATL done, I know there are threads and debates against it, but still if my doctor feels I would be better, I would do it. So please do not discourage me as I would stop visiting the site if I find hate/demotivation in PMs or on my diary.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on June 24, 2018, 09:10:20 AM
Thanks for taking the time to answer the questions, some interesting stuff in there. And yep, some of us have seen your old pics/videos, so feel free to upload and delete as you please if privacy is a concern. Put yourself first.

I've been wondering how you've been dealing with the recent topics about Dr. Pili and ATL. Surely additional surgery isn't desired, but I'd trust my doctor, my gut, and people on the internet; in that order. Good luck.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Body Builder on June 24, 2018, 10:47:07 AM
For a last time, don't do atl exactly after finish lengthening and furthermore if you have at least 15degrees+ permanent plantar flexion.

Give yourself some time, do some good PT and walk a lot at least 3 months after finishing lengthening.
If your equinus havent imroved at all (very rare) then its up to you to do atl or not.
But not from the begining. I've said a lot of times my opinion and my experience about atl but it doesnt matter.
You should always give yourself some time before taking the most extreme solution (which here is a new surgery like atl).

I wish you the best.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on June 24, 2018, 10:48:53 AM
Give yourself some time, do some good PT and walk a lot at least 3 months after finishing lengthening.
If your equinus havent imroved at all (very rare) then its up to you to do atl or not.
But not from the begining.

Agreed, good advice. You had ATL almost immediately after lengthening, which was drastic.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 24, 2018, 11:32:12 AM
For a last time, don't do atl exactly after finish lengthening and furthermore if you have at least 15degrees+ permanent plantar flexion.

Give yourself some time, do some good PT and walk a lot at least 3 months after finishing lengthening.
If your equinus havent imroved at all (very rare) then its up to you to do atl or not.
But not from the begining. I've said a lot of times my opinion and my experience about atl but it doesnt matter.
You should always give yourself some time before taking the most extreme solution (which here is a new surgery like atl).

I wish you the best.
Thanks BodyBuilder, I really consider your advices, but ATL I feel has its pros as well. Equinus may distract the bones less than turned. And having equinus post lengthening, itslef could cause subsidence, specially pure ilizarov. If you see lumiere/'s diary, he lost 1-1.5cm since he opted out of ATL. Also after ATL the stretching excericese(which are painul) would be less and yo would only be doing ATL rehab excercises, and the remaining lengthening would be easy.

Its not about the money that Dr Pili is suggesting ATL, as for italians, it is covered by insurance. I feel he is suggesting for the better. He was so confidant about ATL that he said I could have the surgery on a thrusday and fly 13hrs back home on saturday and resume work by monday. Hs said the walk would be much better. He must know his stuff too based on his experience.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 26, 2018, 12:28:41 PM
update: 61 days post op, 47days since lengthening
gain: 3.6cm
stats: left knee is quite a lot of pain while i try to straighten it. Dorsiflexion still okay though. The calfs are also carrying a lot of tension. A minute pain, but constantly. Knees pain if I dont have the inertia of walking, and start to walk. I had to take a painkillers after so many days to get to sleep the other day. Based on these factors and my doctor advice too, I have decided to undergo ATL next month.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 21, 2018, 06:11:26 PM
update: 86 days post op, 74days since lengthening, day 1 post ATL
gain: 5.5cm
stats:
Got my ATL done yesterday , i am flying back home now. Now I have 2 more screws at each heel and a couple of stitches. Can walk, much slower though. Burn/pain around the heels is killing me. About to have the most rough travel ever. This should last a week and my walking would be like before according to doctor atleast. On the good side, I can straighten my legs completely and have reached 5.5cm. The balance losing thingy, I am yet to experience. Only problem so far is the pain :(. Dr also gave injections I need to take for a few days to avoid DVT. Would be posting pictures shortly.
To future LLers, if you can, avoid ATL(I am a decent pain bearer, and its bad. Trust.)
Please dont spam my thread or mailbox with negativity regarding ATL. I am in no need for such negative comments now. Thanks
Title: Re: My Journey with Dr Pili(HEF)
Post by: lucindaris on July 21, 2018, 06:19:30 PM
So in your case it was 5.5 cm and after that ATL was necessary?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 21, 2018, 06:26:45 PM
So in your case it was 5.5 cm and after that ATL was necessary?
I am still lengthening. Dr Pili/Catagni only perform ATL on those who wish to lengthen further. That way you do regain some tension back in your achilles after you reach your goal. Afaik, my LL buddy's brother did feel tight after he got to 9.5cm. He did his ATL when he was at 4. He can run/jump etc now
Title: Re: My Journey with Dr Pili(HEF)
Post by: Bruce Wayne on July 21, 2018, 06:59:34 PM
I am still lengthening. Dr Pili/Catagni only perform ATL on those who wish to lengthen further. That way you do regain some tension back in your achilles after you reach your goal. Afaik, my LL buddy's brother did feel tight after he got to 9.5cm. He did his ATL when he was at 4. He can run/jump etc now

Hey man, just because he can perform some simple athletic movements does not mean his athletic function is 100% of what i's supposed to be.

Btw, I want to ask you a few questions.

1. Can we have the surgery with Dr. Catagni instead of Dr. Pili?

2. Can we refuse to have ATL? If yes, what are some alternatives such as stretching or something?

Thanks.
Title: Re: My Journey with Dr Pili(HEF)
Post by: The Dreamer on July 21, 2018, 08:00:41 PM
Bruce Wayne,after LL you will never be back to 100%,not even close.And I mean a conservative LL(like 5cms on tibias)
If you manage to come back at 60/70%, it would be a good result
Very interesting the ATL part.So they suggest to lengthen the tendon if you want to surpass 4/5 cms
Title: Re: My Journey with Dr Pili(HEF)
Post by: Bruce Wayne on July 21, 2018, 08:59:14 PM
Bruce Wayne,after LL you will never be back to 100%,not even close.And I mean a conservative LL(like 5cms on tibias)
If you manage to come back at 60/70%, it would be a good result

We should lose 3% max based on this study.

http://www.limblengtheningforum.com/index.php?topic=481.msg8548#msg8548

Very interesting the ATL part.So they suggest to lengthen the tendon if you want to surpass 4/5 cms

No, to Dr. Catagni, no limitation, he can do it to you even when you reach 4cm.
Title: Re: My Journey with Dr Pili(HEF)
Post by: lucindaris on July 22, 2018, 12:43:15 AM
So your buddy did 9.5cm in tibia? Wow
Title: Re: My Journey with Dr Pili(HEF)
Post by: The Dreamer on July 22, 2018, 12:27:37 PM
It is a very small size of patients(16) and it isn't told if they were achondroplasiac or not so I wouldn't trust it at all
Athletes struggle to recover from a broken tibias/femur and often don't regain the previous athleticism,I can't see how lengthening the soft tissue wouldn't have a great negative impact upon our body
Athleticism is not only walking and running slowly,is way more(reflexes,explosivity ecc)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 22, 2018, 05:35:24 PM
Hey man, just because he can perform some simple athletic movements does not mean his athletic function is 100% of what i's supposed to be.

Btw, I want to ask you a few questions.

1. Can we have the surgery with Dr. Catagni instead of Dr. Pili?

2. Can we refuse to have ATL? If yes, what are some alternatives such as stretching or something?

Thanks.
Yes to both questions. The other patient I know is avoiding ATL using some excercises. He is undergoing PT from a Pili therapist. Apparently all patients from that therpaist have surpassed 7cm without ATL. Yes, his flexibility has improved. As a tip, I would suggest you stay in Milan and undergo Pt suggested by that of doctor recommenddd therapist. I would do so, if I could go back in time.
Title: Re: My Journey with Dr Pili(HEF)
Post by: The Dreamer on July 22, 2018, 06:04:11 PM
Yes to both questions. The other patient I know is avoiding ATL using some excercises. He is undergoing PT from a Pili therapist. Apparently all patients from that therpaist have surpassed 7cm without ATL. Yes, his flexibility has improved. As a tip, I would suggest you stay in Milan and undergo Pt suggested by that of doctor recommenddd therapist. I would do so, if I could go back in time.
So you did ATL and didn't go to PT because you had to fly back home ?
Title: Re: My Journey with Dr Pili(HEF)
Post by: Bruce Wayne on July 22, 2018, 06:26:27 PM
Yes to both questions. The other patient I know is avoiding ATL using some excercises. He is undergoing PT from a Pili therapist. Apparently all patients from that therpaist have surpassed 7cm without ATL. Yes, his flexibility has improved. As a tip, I would suggest you stay in Milan and undergo Pt suggested by that of doctor recommenddd therapist. I would do so, if I could go back in time.

So what's the reason you choose Pili instead of Catagni who's obviously more experienced and a legend in Illizarov?

That's a good news regarding ATL. So we have to stay in Milan for 3 months during lengthening phase just because the PT is based there and then we can go home to our home country during consolidation period?

One more question, can we request to have TSF instead of his HEF? It seems that TSF is a superior frame afterall. If yes, the world would be perfect!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 23, 2018, 09:39:03 AM
So you did ATL and didn't go to PT because you had to fly back home ?
yes, and besides, I had to stay in Italy to avail the same PT suggested by Pili
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 23, 2018, 09:40:31 AM
So what's the reason you choose Pili instead of Catagni who's obviously more experienced and a legend in Illizarov?

That's a good news regarding ATL. So we have to stay in Milan for 3 months during lengthening phase just because the PT is based there and then we can go home to our home country during consolidation period?

One more question, can we request to have TSF instead of his HEF? It seems that TSF is a superior frame afterall. If yes, the world would be perfect!
Pili coz he was more approachable and easier to communicate in english with
Would suggest you finish lengthening there and tske his PT and avoid ATL
he is particular about hef. not sure about tsf
Title: Re: My Journey with Dr Pili(HEF)
Post by: Bruce Wayne on July 23, 2018, 11:11:12 AM
Pili coz he was more approachable and easier to communicate in english with
Would suggest you finish lengthening there and tske his PT and avoid ATL
he is particular about hef. not sure about tsf

You think that Catagni's skills have decreased as he aged?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 23, 2018, 02:50:20 PM
update: 88 days post op, 76days since lengthening, day 3 post ATL
gain: 5.7cm
stats:
Terrible pain and burn around the ATL site. So far its the worst pain I have ever experienced. Can confirm regarding the pain they talk about. My stride is 1/10th of what it used to be. Its really hard to find a decent position to sleep too. Would give it a few more days for attaining a normal stride or would resort to a wheelchair may be. After my journey, my feet are swollen too. Entire feet below the ankles are in bad shape now.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 23, 2018, 02:51:35 PM
You think that Catagni's skills have decreased as he aged?
No, he was there for my initial surgery. He is also the surgeon and doctor chosen by my LL buddy. He seems to do fine too.
Title: Re: My Journey with Dr Pili(HEF)
Post by: doomsday on July 23, 2018, 04:12:13 PM
You think that Catagni's skills have decreased as he aged?
You're mentally retarded , seriously...
Title: Re: My Journey with Dr Pili(HEF)
Post by: JON SNOW on July 23, 2018, 06:52:18 PM
update: 88 days post op, 76days since lengthening, day 3 post ATL
gain: 5.7cm
stats:
Terrible pain and burn around the ATL site. So far its the worst pain I have ever experienced. Can confirm regarding the pain they talk about. My stride is 1/10th of what it used to be. Its really hard to find a decent position to sleep too. Would give it a few more days for attaining a normal stride or would resort to a wheelchair may be. After my journey, my feet are swollen too. Entire feet below the ankles are in bad shape now.

fist 2 weeks after ATL are rough, post surgery inflammation/pain can last 15-20 days, give it time mate
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 03:25:22 PM
Hey fivetenneeded2016 keep it hard, you'll see that once the period of pain is over, you'll be better ....
do not throw yourself down ... you've almost passed the hardest part .....
You're a great ...
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 24, 2018, 03:31:46 PM
Hey fivetenneeded2016 keep it hard, you'll see that once the period of pain is over, you'll be better ....
do not throw yourself down ... you've almost passed the hardest part .....
You're a great ...
Thanks for all support guys, as a quick update, pain is very less today. Have walked for 40mins. Stride is 80% normal length.
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 03:37:39 PM
This company invented this gadget to avoid equine.
I wonder if it works they talked about it in a blog




https://www.google.it/url?sa=i&source=images&cd=&ved=2ahUKEwjSmpmCiLjcAhVrDsAKHTeeBesQjRx6BAgBEAU&url=http%3A%2F%2Fwww.vfprocess.com%2Fhome.php%3Faction%3Dsection%26cat_id%3D5%26page%3Dmedical&psig=AOvVaw254q0spA7Q4AGDaXrnehYi&ust=1532532875268712
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 03:40:11 PM
The medical apparatus anti-equine TENSIOACTIVE is used for each traumatic pathology suffered on the limbs treated with the External Fixation


VFPROCESS
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 03:42:40 PM
https://goo.gl/images/X9ox4F
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 24, 2018, 06:33:31 PM
ATL fixator pic and recent xrays. I did not take the pic while i was doing my dressing for the stitches. There are 12 on each leg, however.
Pili said my callous were not as good as the ones previously taken. :( I am thinking of taking calcium vitd3 tablets along with more weight bearing and protien shake. Lets see *fingers crossed*  :-\
He also said I had developed a bit of deformity which he corrected. I dint ask much in detail coz I was under anaesthesia during this conversation and I forgot to follow up on it later.
https://imgur.com/a/creQ5ZV
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 24, 2018, 06:34:21 PM
The medical apparatus anti-equine TENSIOACTIVE is used for each traumatic pathology suffered on the limbs treated with the External Fixation


VFPROCESS

Not sure as I did not hear about it, may be the next patient can give it a try  ;)
Title: Re: My Journey with Dr Pili(HEF)
Post by: 419 on July 24, 2018, 07:15:38 PM
Has Pili already done ATL on you? he must be itching to do ATL urgently and screw you up.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 24, 2018, 07:32:14 PM
Has Pili already done ATL on you? he must be itching to do ATL urgently and screw you up.
prakash, please do not talk without data. Check my previous post which mentions all ATL patients of dr Pili and catagni and all seemed to do well. Point me one case where Pili/catagni patient has been fuxxed over. Just one.

As I said I would document very frequently(atleast once a month even after I am done with tibias), I would inform shall I face any difficulty post the entire process. And again, please dont be negative regarding this.
My walking isnt that bad too given its just 3 days post ATL. Theere was a lot of pain and discomfort never the less.
video:
https://youtu.be/wWp5O9RyM0w
Title: Re: My Journey with Dr Pili(HEF)
Post by: 419 on July 24, 2018, 07:45:03 PM
prakash, please do not talk without data. Check my previous post which mentions all ATL patients of dr Pili and catagni and all seemed to do well. Point me one case where Pili/catagni patient has been fuxxed over. Just one.

As I said I would document very frequently(atleast once a month even after I am done with tibias), I would inform shall I face any difficulty post the entire process. And again, please dont be negative regarding this.

dude, the way he doles out ATL like candy is a concern for all, either you do see it but don't want to acknowledge or you are here to support him you are so taken by him (in a good way maybe because of your good experience) that you simply see no negative. Anyway man, I have no negative feelings for you (just for the mass ATL Pili does) on the contrary I wish all the best in the endeavor you have undertaken or will undertake in future. Your walking looks great and I am sure you will do excellent. Bye.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 24, 2018, 07:48:36 PM
No offense to you either. I am aware of the risks of ATL. And I too wished I avoided it, but I trust my doctor more so decided for ATL. I also mentioned if you stayed in Italy and did PT with his trainer you could easily surpass 7cm without ATL. He does recommend the surgery if he feels the need. Again, its individual doctor's preference, and if the doctor is confident and is open to discuss his past experience, I feel a good bet to trust the doctor.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 24, 2018, 08:05:01 PM
And yes, I might seem biased towards Pili/Catagni because I do not have any bad experience(but I am giving your first hand experience under them) or have read of any bad experiences from them(with data). Or may be I dont want negativity from what is already done, as it cannot be undone. :) I dont mean to offend any of you either :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: 419 on July 24, 2018, 08:10:32 PM
And yes, I might seem biased towards Pili/Catagni because I do not have any bad experience(but I am giving your first hand experience under them) or have read of any bad experiences from them(with data). Or may be I dont want negativity from what is already done, as it cannot be undone. :) I dont mean to offend any of you either :)

no problem mate, I can understand being in Italy Pili is very convenient, I wish you all the best. the point is - Achilles tendon should better be left untouched - that's what I feel, the more invasive things one does the more trouble he/she is asking for. That said - we all in the world have different way of thinking and ai respect yours. All the best my friend.
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 08:27:49 PM
no problem mate, I can understand being in Italy Pili is very convenient, I wish you all the best. the point is - Achilles tendon should better be left untouched - that's what I feel, the more invasive things one does the more trouble he/she is asking for. That said - we all in the world have different way of thinking and ai respect yours. All the best my friend.
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 08:40:17 PM
the problem is that the tendon does not stretch too much ..... In this forum you do not want to understand that to stretch more than 5 cm becomes necessary except for some cases (very rare) ...
even if you do not have the dancer gets too tight and tears ....
I would like to hear the opinion of those who have alluded up to seven cm and did not make the tendon if it is okay .....
Unfortunately it is the price to pay .... and  if the surgery is done well there are no problems .. 100% legs do not return even without atl is known ... I do not think that the physiotherapist of Pili solves the cases as it says .. maybe for minor lengthening ... otherwise ATL would not do anybody while also in the case of catagni envy on 54 patients 53 did ATL ..
and anyway it seems to me from the video that after three days I walk too well ...
Title: Re: My Journey with Dr Pili(HEF)
Post by: 419 on July 24, 2018, 08:43:51 PM
the problem is that the tendon does not stretch too much ..... In this forum you do not want to understand that to stretch more than 5 cm becomes necessary except for some cases (very rare) ...
even if you do not have the dancer gets too tight and tears ....
I would like to hear the opinion of those who have alluded up to seven cm and did not make the tendon if it is okay .....
Unfortunately it is the price to pay .... and comunwue if the surgery is done well there are no problems .. 100% legs do not return even without atl is known ... I do not think that the physiotherapist of Pili solves the cases as it says .. maybe for minor lengthening ... otherwise ATL would not do anybody while also in the case of catone envy on 54 patients 53 did ATL ..
and anyway it seems to me from the video that after three days I walk too well ...

got your point, but when a human grows normally ( I know many who had sudden growth spurt at later age like 20 etc.) if ATL is not needed it would not be required in LL either, it may be painful (because LL is lengthening much faster than normal human growth rate) - still the tendons etc. should naturally be able to stretch/grow.
Title: Re: My Journey with Dr Pili(HEF)
Post by: warrior on July 24, 2018, 08:56:24 PM
you're talking about a natural thing ..... it is obvious that if you suddenly grow the tendon stretches .....
but how will you become established from birth then every single muscle tendon etc. etc. it is naturally arranged ....
LL is an artificial thing ... in fact it only modifies some parts of your body ... in fact you can not become two meters tall ... your speech is not standing ... and if you think about stretching a 5 cm curtain already it is an enormity ....
take as an example a rubber band if you stretch it too much that happens ??
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on July 27, 2018, 10:57:29 AM
Best of luck FTN! Hopefully ATL proves to be a good decision for you down the line.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on July 27, 2018, 12:49:21 PM
Best of luck FTN! Hopefully ATL proves to be a good decision for you down the line.
Thanks buddy, I  am doing well. Hope you are fine too :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacc on July 27, 2018, 02:55:30 PM
Glad your pain has been improving since the surgery!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 14, 2018, 09:36:10 PM
update: 111days post op, 97days since lengthening, day 26 post ATL
gain: 7.3cm
stats:
1. pinsites look bad(specially neat the mid tibial region. But Dr pili said nothing to worry, and suggested to clean it daily with chlorine water and somedays with hydrogen peroxide. My situation has improved a bit recently.
http://imgur.com/a/HKN2VAO
But washing with just chlorine, I figured isnt good. You get a constant itch on the skin.
http://imgur.com/a/LpZgRBC
So I started wiping it off with hydrogen peroxide.

2. Terrible pain around one of the pins on my right feet(the pin used for fixing my feet after ATL). I went to the local doctor who confirmed nothing major after seeing xrays and was prescribed painkillers. The pain is not a constant pain but it occurs weekly almost and lasts for 1-2 days. I figured it happens in the weekends when my legs are up(weekdays I sit at my workstation most of the time), and occurs I put it back down. It feels like a bone pain. very bad.

3. After 6.5cm I could acutally feel the new height. But I still am short given my inital height. Now if you asked me I would say dits pointless to lengthen less than that. You wouldnt find much difference at all.

4. From here, I would quit posting on how much I lengthened or how much more I plan to lengthen to avoid the attention of the naysayers.

Cons of ATL:(only my perspective)
1. pain in the heels.
2. funny stretch when you take longer stride.
3. I had a lot of swelling and fluid oozing from my stitches. which too hurt at times.

Pros: Not any besides the ease of lengthening. You can forget about stretching etc and still feel no pain.

Other than the pull while taking longer stride, there is no difference in walking. No sense of imbalance or whatever. Just pain at the heels till the screws are there may be.

P.S. all statements made are anecdotal, so wouldnt be debating.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Body Builder on August 14, 2018, 09:49:44 PM
The change in stride will make you run much slower, jumping (and land from jumping) much harder and shorter and of course have less balance. You can't see it now with all that pins and pain but when all these go away in some months, you could see more clear how different the functionality of your legs will be due to atl.

Don't be afraid of the pain, this will go away completely in some months I can guaranee that to you (I was very afraid of that when I did atl but pain went away completely). But the loss of a good amount of functionality won't change.
I hope I prove wrong though and the difference will be very small, not like mine's before my fixing surgery.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 14, 2018, 09:53:37 PM
The change in stride will make you run much slower, jumping (and land from jumping) much harder and shorter and of course have less balance. You can't see it now with all that pins and pain but when all these go away in some months, you could see more clear how different the functionality of your legs will be due to atl.

Don't be afraid of the pain, this will go away completely in some months I can guaranee that to you (I was very afraid of that when I did atl but pain went away completely). But the loss of a good amount of functionality won't change.
I hope I prove wrong though and the difference will be very small, not like mine's before my fixing surgery.
I hope it becomes as normal as before. But bodybuiler, I thought you did ATL post lengthening, not while lengthening. If so, I wonder why you had your feet fixed using screws? Did you aa well have pain on your heels? My only concern regarding pain is it that it shouldnt be an obstable for me to focus at work.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Body Builder on August 14, 2018, 10:30:16 PM
I hope it becomes as normal as before. But bodybuiler, I thought you did ATL post lengthening, not while lengthening. If so, I wonder why you had your feet fixed using screws? Did you aa well have pain on your heels? My only concern regarding pain is it that it shouldnt be an obstable for me to focus at work.
I didn't have my feet fixed.
I still had my monorail frames on but I had stopped lengthening.
After surgery (of atl) I had my legs inside a cast and after 2 weeks in a boot and started to bear some weight. My rehabilitation protocol was exactly the same as at rupture.
But the first days after surgery were very painful, maybe my ex doctor hit some nerve because I had burning sensation a lot.
After my at shortening surgery (where the tendon was cut again so I should have had the same pain) the pain was much less and only for 3-4 days.
After atl I had heel pain because the tension was completely off and the majority of weight was on the heel (while is should have been 50-50 between front and back) and I had some pains (not great though) till I fixed my tendons.
After at shortening I never had any heel pain, at least 3-4 weeks after the surgery.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 18, 2018, 12:05:22 PM
Update:
I have been having terrible heel pain(since my heels/foot was fixated post ATL). The pain is not due to the achilles tendon that is cut, but the pins at the heels(more like bone pain). This is the worst kind of pain I have experienced in my life. And it lasts for more than 3-4 hours. Its so bad that I have been walking very little. I am trying to avoid walking. Paracetamol/painkillers do not give any relief. Ice pack gives a temporary relief though.
Title: Re: My Journey with Dr Pili(HEF)
Post by: JON SNOW on August 19, 2018, 04:20:54 AM
Update:
I have been having terrible heel pain(since my heels/foot was fixated post ATL). The pain is not due to the achilles tendon that is cut, but the pins at the heels(more like bone pain). This is the worst kind of pain I have experienced in my life. And it lasts for more than 3-4 hours. Its so bad that I have been walking very little. I am trying to avoid walking. Paracetamol/painkillers do not give any relief. Ice pack gives a temporary relief though.

yes ATL is painful, arguably much more than LL

cope with your pain bro,  in a few weeks it should disappear and usually  in a few months your mind will forget it

stay strong, good luck
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 19, 2018, 05:01:58 PM
Update:
I couldnt walk today due to the tremendous pain at both heels now. Pili's response was to keep legs elevated which does provide relief but its not a solution. Besides my back is hurting from lying down from 30+ hours :(. I might get admitted for a short time in a hospital in my city or perhaps meet Parihar in case situation worsens, coz my next appointment with Pili is 2 weeks later, and Idk if I can bear for that long.
Title: Re: My Journey with Dr Pili(HEF)
Post by: The Dreamer on August 20, 2018, 11:25:03 PM
Hey man,hold on !
I have to ask if you can tell us how much have you currently lengthenened.We need to match your difficulties with the ammount of lengthening since they are linked
Some questions
1)Have you tried any kind of pankillers,also the stronger ones ? Is the pain really that bad that no painkiller can relieve it ?
I think it couldn't be addiction since you mentioned you were taking almost no painkillers at all,before atl
2)Do you think it is possible to lengthen 5cm without atl and using the Pili's PT ? Is that PT included in the surgery's fee ?
3)Are you still wearing the footholder with the atl pins ?
From your last update you have lengthened 7,3 cm which is a great ammount.Maybe you should stop and do femurs later,aren't you worried about proportions ? Since your starting height seems very low(I woulf guess 1,60 cm or below)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 21, 2018, 08:12:49 PM
Hey man,hold on !
I have to ask if you can tell us how much have you currently lengthenened.We need to match your difficulties with the ammount of lengthening since they are linked
Some questions
1)Have you tried any kind of pankillers,also the stronger ones ? Is the pain really that bad that no painkiller can relieve it ?
I think it couldn't be addiction since you mentioned you were taking almost no painkillers at all,before atl
2)Do you think it is possible to lengthen 5cm without atl and using the Pili's PT ? Is that PT included in the surgery's fee ?
3)Are you still wearing the footholder with the atl pins ?
From your last update you have lengthened 7,3 cm which is a great ammount.Maybe you should stop and do femurs later,aren't you worried about proportions ? Since your starting height seems very low(I woulf guess 1,60 cm or below)
I cant tell you how much, but I havent passed 8.
1. I tried paracetamol variants of 1g. I never used painkillers expect for the first 2-3 days post op.
2. Yes, but depends. I did my ATL at 5.5cm. The other patient, who I made friends with, his brother had to do it at 4.5cm itself.
PT is separately charged, Idk how much though.
3. After ATL my foot was very sensative to dorsiflexion, so I did not wear footholder, although I was recommened to :( I would be stopping soon.
Pili said he would remove the addtional ATL structures the following visit.
Regardig the length, it is indeed personal. I did not feel much difference till i reached 6.5-7cm. My proportions are okay. I go out in public every once a while, none of the people I interact with whom I have asked have commented about it.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 21, 2018, 08:17:22 PM
update: 111days post op, 97days since lengthening, day 26 post ATL
gain: 7.3cm
stats:
1. pinsites look bad(specially neat the mid tibial region. But Dr pili said nothing to worry, and suggested to clean it daily with chlorine water and somedays with hydrogen peroxide. My situation has improved a bit recently.
http://imgur.com/a/HKN2VAO
But washing with just chlorine, I figured isnt good. You get a constant itch on the skin.
http://imgur.com/a/LpZgRBC
So I started wiping it off with hydrogen peroxide.
Guys, another update. Due to my chlorine allergy, the rashes were the omset of dermatitis which my derm confirmed. Now I am treating that as well. But that is superficial. The situation is okayish near the pinsites. Also I was suggested to wash the sites with saline water instead of chlorine. I would cross validate with Pili before taking this step.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 24, 2018, 11:09:33 AM
Update:
I couldnt walk today due to the tremendous pain at both heels now.
Update: I think the reason for pain could have been infection. I tested the culture swab which came out positive for Staphylococcus Aureus(moderate growth).  :'(
I am now on antibiotics. Hope it is just superficial and not to the bones. I would find that out soon after taking Xrays.
I pray the situation gets better and life gets back to how it was a few weeks ago  :-\

I am given antibiotics(augmentin d) for 12 days. Any idea how many days it would take to show effect?

A bit more about the situation:
Its on the heels(the ATL pins), a few pins pain when touched with slight force, and also slight movement if i try to pull/push it :( . The skin near the pin has gone soft and gooey like it contains pus. Tremendous pain in weight bearing, and sometimes dicharge of thick white/red fluid. However, no fever. My local doctors have said that it is mostly superficial and not at the bones, but would have to take xrays to find out. The situation had worsened since it began 10-12 days ago. I pray its not a bone infection.
Could someone confirm?
Title: Re: My Journey with Dr Pili(HEF)
Post by: Body Builder on August 24, 2018, 12:11:04 PM
I don't think it is a bine infection. You should have had fevers and all these major symptoms.
Augmentin is good for gram positive bacterials like staphylococcus. In less than a week you should have a major improvement. If not, go to doctors again because something is wrong.

Finally, I think that you had an almost easy LL experience before doing atl. As you can see, atl is not a walk in the park. It is a very major surgery, maybe even more than LL, and rehabilitation is very hard. I mentioned again how bad that surgery is but now a Pili's patient writes his own experience about it and this is very important for future LL'ers, especially for that doctor who does a so crucial and risky surgery to almost anyone LL'er, while almost noone really needs it.

In terms of infection I really believe that you'll become better. Also, pains from atl will become less after some time till it will disappear. But functionality won't be the same. The closer to norlal it will be the better for you. I really hope to be very close to normal. But please continue to write here about your experience as I did because if your outcome of atl is very bad like mine, then you should warn people to avoid it, because many of believe that Pili-Catagni does have some miraculous technique that has only advantages and no disadvantage, something that is completely false.
The only question for me is how bad are these disadvantages.
Title: Re: My Journey with Dr Pili(HEF)
Post by: GiuseppeLo on August 25, 2018, 10:28:11 AM
Hi everyone!! I m just doing my surgery soon, in almost 3 weeks with Dr Pili in Lecco, does anyone give some tips about that??how is it going for u'all guys so far??  Many thanks!!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 25, 2018, 12:30:08 PM
Hi everyone!! I m just doing my surgery soon, in almost 3 weeks with Dr Pili in Lecco, does anyone give some tips about that??how is it going for u'all guys so far??  Many thanks!!
Stay in italy. opt for his physio. work towards your flexibility. and avoid atl(if you can). good luck!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on August 30, 2018, 08:13:21 PM
Update: I think the reason for pain could have been infection. I tested the culture swab which came out positive for Staphylococcus Aureus(moderate growth).  :'(
I am now on antibiotics. Hope it is just superficial and not to the bones. I would find that out soon after taking Xrays.
I pray the situation gets better and life gets back to how it was a few weeks ago  :-\

I am given antibiotics(augmentin d) for 12 days. Any idea how many days it would take to show effect?

A bit more about the situation:
Its on the heels(the ATL pins), a few pins pain when touched with slight force, and also slight movement if i try to pull/push it :( . The skin near the pin has gone soft and gooey like it contains pus. Tremendous pain in weight bearing, and sometimes dicharge of thick white/red fluid. However, no fever. My local doctors have said that it is mostly superficial and not at the bones, but would have to take xrays to find out. The situation had worsened since it began 10-12 days ago. I pray its not a bone infection.
Could someone confirm?
Update: I feel quite better now in terms of pain...can walk small distance but not as before. I would regain the same previous self hopefully by another week when Dr Pili removes the screw at the heels.
I still have not taken radiographs or more tests to find out if its a bone infection. I pray its not. But 2 of my screws at the heels move when pulled/applied force upon. That bloody pains.
Currently taking augmentin 1000, 2-3 times a day. I mailed Pili regarding my condition, he was very partivular about avoiding antibiotics and said its normal. Lets see. Fingers crossed.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 04, 2018, 04:44:17 PM
Update: Had my screws of ATL and some thin pins at the knee removed. i could walk just as easy as pre-ATL just after the removal. Dr Pili corrected said I would feel reincarnated after the ATL screw removal  :D. I walked 2-3 km again as before, just after the removal. walking has instantaneously improved.

One of the screws however broke and the broken part is still in the heels. Pili said it wouldnt cause a problem, even if it does he would remove it at frame removal.

Regarding the loss of tightness I cannot confirm yet, but as Dr Pili said I can lengthen a bit more too to ensure the tendon is stiff as before.
Nevertheless, I would update till atleast next year about my situation for any ups and downs regarding the post ATL effect.
Would post the xrays soon.
Title: Re: My Journey with Dr Pili(HEF)
Post by: The Dreamer on September 04, 2018, 06:00:06 PM
Great update 5.10
Did you get the result of those tests to see if you had developed infection ?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 05, 2018, 03:01:29 AM
Great update 5.10
Did you get the result of those tests to see if you had developed infection ?
Not really, Dr Pili could tell it by eye, and sounded definite :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 07, 2018, 09:50:07 AM
Update:
I have been walking much better, just like pre ATL. This is just 3 days post screw removal. I could however feel the difference the second the screw was removed. When I walked in to the hospital, I could barely walk. It took me 10 mins to walk 100-200 meters from my hotel next street to the hospital. I could go back to the station which is 900m-1km, in the same with much ease after the visit.
This is common apparently for ATL cases, as I spoke to shadow when i met him.
me and him required ATL, as both of us had continued to work during lengthening. However with my other two LL buddies, they managed 7-8cm without ATL following physio therapy regularly.

so again, not all patients get ATL under pili/catagni. it depends on the flexibility and goals.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 07, 2018, 09:52:58 AM
I am still lengthening, very slowly though as I recieved the permission of Pili, since my tendons were still a little loose, I could manage. Regarding the number I have done, I would not share till I recover or by next year mid. I would however put a pic of myself to give an idea about the proportions. No one has questioned my proportions yet, although I had small legs to begin with.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on September 07, 2018, 11:05:21 AM
Glad that things are improving for you regarding ATL, and so fast. Keep it up!
Title: Re: My Journey with Dr Pili(HEF)
Post by: The Dreamer on September 07, 2018, 01:06:04 PM
Very good 5teen,we are waiting for the pictures
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 07, 2018, 11:58:30 PM
Android: thanks a lot, when are you doing your second set?
The Dreamer: I ll be done with lenghtening and correction in 2-3 weeks. I would post my pics/xrays then. The present xrays do not have anything new other than the gap, so...
Title: Re: My Journey with Dr Pili(HEF)
Post by: qirenzhe123 on September 14, 2018, 02:22:43 PM
I'd like to go to Dr. catagni for an operation. I wonder how much money you've spent so far?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 14, 2018, 04:27:31 PM
I'd like to go to Dr. catagni for an operation. I wonder how much money you've spent so far?
24.5k €
I did not stay there..I go back a day after or same day of monthly consultation. So you can add in roughly 2-3k€ more for travel.
Title: Re: My Journey with Dr Pili(HEF)
Post by: qirenzhe123 on September 14, 2018, 06:02:06 PM
Can you give me a detailed charge? what is included in 24.5k? how much will it cost if I stay there for four months?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 14, 2018, 07:08:55 PM
Can you give me a detailed charge? what is included in 24.5k? how much will it cost if I stay there for four months?
approx 20k for surgery
4.5k for atl surgery..atl you can avoudbif you stretch..no idea how much it would be if you stayed.
Title: Re: My Journey with Dr Pili(HEF)
Post by: qirenzhe123 on September 14, 2018, 07:53:05 PM
approx 20k for surgery
4.5k for atl surgery..atl you can avoudbif you stretch..no idea how much it would be if you stayed.
Do you include food and accommodation when you say on the first page that you share the cost of living with the local people or the students at 1K per month?
Title: Re: My Journey with Dr Pili(HEF)
Post by: qirenzhe123 on September 14, 2018, 07:57:45 PM
And where do you live? why can the doctor send you back? Dr. Catagni says he can't.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Annalisa on September 14, 2018, 08:31:16 PM
Do you think is feasible to do the stretching exercises and avoid ATL without physiotherapist? I won't have to work, but I would prefer to do lengthening at home, to save money
Title: Re: My Journey with Dr Pili(HEF)
Post by: Android on September 16, 2018, 09:08:05 AM
Android: thanks a lot, when are you doing your second set?


I'm still in Russia, but once I'm home I'll at least spend six months there before returning. No rush.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 27, 2018, 05:01:34 PM
Hey all, Sorry for not replying..I just glance the forum once a day for a very short time these days due to my schedule.
I would reply like once a week or a fortnite depending on the free time I get, please dont feel bad. Also I request to ask only the questions that I have not discussed on my diary. Please do not ask questions that I may seem biased( I would obviously vouch for Pili regardless ATL, since my experience has been good so far..might consider him for femurs too may be sometime) too or may be trivial, for your own good. Like "would I suggest Dr Pili or Am I happy with the results or how are you?" as I cant answer all questions. Also I would not answer questions that could concern my privacy or something like "How much have I lengthened.."..

Mostly I would update with details so you might not have a question ;) but any good question, I would reply immediately when I see. :)

Okay, as an update: I am done lengthening and am in the correction phase which is attained by only lengthening a few struts of a leg, since I had a discrepency. Not sure if it was before or during the process. Dint ask Dr Pili too..but he suggested I lengthen only one of my legs for a few more mm.

Also regarding proportions..here is a pic(I would delete it shortly)
Please note that my arms and neck may appear short since I am holding my crutch which needs me to up the shoulders a bit. No one has question depsite me doing a lot of lenghening(8.5+ ;) ), and I too feel it looks natural, coz I had smaller legs to begin with. I would post another one just in short shorts sometime else, like next month...
http://imgur.com/a/NFoVNwv

Regarding Xrays:
http://imgur.com/a/Qs3nXIt

Dr Pili said I could walk unassisted in 1-2 months may be...and frame removal after like 4-5 months from now. To harden the callous, he suggested me deca-durabolin in a small dose(25mg weekly) for month.

As a question I got asked, I thought of answering here: Dr Pili said he would get the stryde by june 2019. However he is said femur lengthening in general causes a varus/bow leg, which is why they dont perfrom it so much.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 27, 2018, 05:04:53 PM


I'm still in Russia, but once I'm home I'll at least spend six months there before returning. No rush.
Cool! wish you the best recovery and further lengthening ;)!! :) so far you have done 5cm then, correct? sincr each alternate limb is 5cm...?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 27, 2018, 05:07:20 PM
Do you think is feasible to do the stretching exercises and avoid ATL without physiotherapist? I won't have to work, but I would prefer to do lengthening at home, to save money
Yes, I know 2 people with me...doing just excercise/lengthening at home, pausing work...thet have done like 7-8cm without ATL. One of them had a physio, other dint...he just did the excercises suggested.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 27, 2018, 05:10:24 PM
And where do you live? why can the doctor send you back? Dr. Catagni says he can't.
Cant tell you where I live. Yes Dr sent me back since I asked him to. Its cheaper in my country to live in and work. Catagni too allows I guess, although they suggest you to stay. If I had the money to stay, I would have and might have avoided ATL too. I would recommend staying till end of correction/lengthening, since its easier to visit the doctor for any emergency. And long flights are not so comfortable just 1-2 days post op like I took ;)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on September 27, 2018, 05:12:30 PM
Do you include food and accommodation when you say on the first page that you share the cost of living with the local people or the students at 1K per month?
Yes, in Lecco, you can if you do find and are willing to share room and stay frugal :) You can check with the locals there. 300-500€ for rent and 300-400€ for food. ;)
Title: Re: My Journey with Dr Pili(HEF)
Post by: Hex on September 27, 2018, 07:06:35 PM
6ft is average today.
Title: Re: My Journey with Dr Pili(HEF)
Post by: hotty on October 05, 2018, 12:59:05 PM
Will you tell your future wife / girl friend about this?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on October 05, 2018, 01:22:33 PM
Will you tell your future wife / girl friend about this?
not unless she find out about my past and questions ;)
Title: Re: My Journey with Dr Pili(HEF)
Post by: qirenzhe123 on October 06, 2018, 04:00:45 AM
Yes, in Lecco, you can if you do find and are willing to share room and stay frugal :) You can check with the locals there. 300-500€ for rent and 300-400€ for food. ;)
Is this the price for finding local people to share it with? Or is it the same price for your own rent? The monthly price?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on October 06, 2018, 01:26:14 PM
Is this the price for finding local people to share it with? Or is it the same price for your own rent? The monthly price?
the price at lecco i meant
Title: Re: My Journey with Dr Pili(HEF)
Post by: qirenzhe123 on October 06, 2018, 07:34:50 PM
the price at lecco i meant
What do you mean by that?
Title: Re: My Journey with Dr Pili(HEF)
Post by: wants2growtaller on October 20, 2018, 11:28:45 AM
Hey im around your height. I was wondering if we could talk about which doctors we could go to.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on October 21, 2018, 02:32:05 PM
Hey im around your height. I was wondering if we could talk about which doctors we could go to.
Hey, If you would plan external tibias(pardon my bias), I would suggest Dr Pili/Catagni for sure :p . I choose him over Paley any day for tibias(if i could afford). Please dont ask me for the reasons as people may hate me as they like to believe Paley is God, Lol. 

For femurs, if albizzia is okay, then go for betz, I would do that, due to his high success rate. Otherwise stryde with Rosbruch. I cant vouch for stryde with pili yet coz I havent seen his results on femur. I really feel Paley is way overrated :P. His oesteotomies are just average, roughly cut. There are too few diaries of him than say betz to feel he is a god. :)

Hope it helps
Title: Re: My Journey with Dr Pili(HEF)
Post by: wants2growtaller on October 21, 2018, 04:18:38 PM
I was thinking of Dr. Giotikas.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on October 21, 2018, 06:10:33 PM
I was thinking of Dr. Giotikas.
Goodluck :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: hotty on October 23, 2018, 01:16:06 PM

For femurs, if albizzia is okay, then go for betz, I would do that, due to his high success rate. Otherwise stryde with Rosbruch. I cant vouch for stryde with pili yet coz I havent seen his results on femur. I really feel Paley is way overrated :P. His oesteotomies are just average, roughly cut. There are too few diaries of him than say betz to feel he is a god. :)


Yeah and Betz and Pili let you lengthen 10cm whereas Paley requires you to stop at 6cm for tibia and 8cm for femurs. Why spend so much money and endure so much pain to only stop at 6cm? It's better to max out which only these few doctors allow. Maybe Pili and Betz clean osteotomy techniques help patients reach greater heights with less trouble.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on October 25, 2018, 04:28:34 PM
Yeah and Betz and Pili let you lengthen 10cm whereas Paley requires you to stop at 6cm for tibia and 8cm for femurs. Why spend so much money and endure so much pain to only stop at 6cm? It's better to max out which only these few doctors allow. Maybe Pili and Betz clean osteotomy techniques help patients reach greater heights with less trouble.
these docs also have a vast majority patients without any complains! ;) they are confident with their technique so....
Dr Pili does corrections after looking at the xray by his eye...and the next xray turns out better no matter how minute the flaw was.

As an update:
I am waiting for consolidation. My left leg showed a bit less of callous and doctor said to continue the rehab as per previous plan. I feel its because i walked minimally this month coz of work at the office :/. I would now walk an hour for this month as an experiment to see the difference. I am 4-5 months from frame removal according to my doctor.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on October 27, 2018, 01:47:16 PM
Mod I posted this post by mistake. could you please remove it?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 12, 2018, 09:41:33 AM
Update:
I have slowly started walking unaided, its a bit wierd coz i am yet to find the right gait. I can walk for like 10minutes may be then i feel I could fall :p
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 12, 2018, 10:33:38 AM
Have you been doing the prescribed deca durabolin? I believe that is an anabolic injection, and I do believe it needs to be stacked with testosterone... Have you done this?
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 12, 2018, 10:38:32 AM
And a big congratulations as well on all your progress man, thanks for all the information. I'm about 2cm's in doing an external ilizarov, and I'm going to stay the entire time here to avoid the ATL with exercises at home. Could you recommend some PT that would be most beneficial? So far:

- Leg extensions (seated)
- Toe touches (face upward lying down)
- Lying leg curl (face downward lying down)
- Side lying leg lifts

If you can add anything else I'm all ears.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 12, 2018, 12:07:05 PM
Have you been doing the prescribed deca durabolin? I believe that is an anabolic injection, and I do believe it needs to be stacked with testosterone... Have you done this?
Yes Have been doing deca, week 6 now with it! I did not see much mineralization at week 3, due to it may be due to small dose(25mg/week). But however I find my pinsites much cleaner due to it and also feel lesss pain after walking/cycling. I am curious how the callous is now though :p.(would find out towards the month end visit)

I did not get your "stacked with testesterone" part though. I thought deca is testesterone!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 12, 2018, 12:12:32 PM
And a big congratulations as well on all your progress man, thanks for all the information. I'm about 2cm's in doing an external ilizarov, and I'm going to stay the entire time here to avoid the ATL with exercises at home. Could you recommend some PT that would be most beneficial? So far:

- Leg extensions (seated)
- Toe touches (face upward lying down)
- Lying leg curl (face downward lying down)
- Side lying leg lifts

If you can add anything else I'm all ears.
there were a few excercises that the doctor prescribed and a few more that my friend does. I would take his permission and upload  that to give you an idea.

I have been going to office pretty much all time, so I missed out on my physios therefore required ATL. Same with shadow too who is busy with his school.

Excercises would indeed help you avoid ATL. Stretch as much bro! I know of 3 other pili/catagni patients who did it with or around my timeline, as I see them during visits..so, those who stretched did NOT undergo ATL. This should tell you the significance of stretching though.

How much have you done btw, if you dont mind telling :p

I am waitibg currently for bone mineralization.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 12, 2018, 02:55:32 PM
there were a few excercises that the doctor prescribed and a few more that my friend does. I would take his permission and upload  that to give you an idea.

I have been going to office pretty much all time, so I missed out on my physios therefore required ATL. Same with shadow too who is busy with his school.

Excercises would indeed help you avoid ATL. Stretch as much bro! I know of 3 other pili/catagni patients who did it with or around my timeline, as I see them during visits..so, those who stretched did NOT undergo ATL. This should tell you the significance of stretching though.

How much have you done btw, if you dont mind telling :p

I am waitibg currently for bone mineralization.

So far I've done 2cm but I'm going to go as far as 6.5, but I am a bit of a softie with pain so I may stop earlier. Thanks again for checking on the PT! It would be a huge help man.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 12, 2018, 03:01:43 PM
I'm finding it a bit sore near my a inside ankles of both feet after I lengthen. I'm trying to stretch as much as possible and then stand and weight bear on my feet. Sometimes if I do 3-4 turns in a day, the pin points and the bottoms of my feet get really sore. It will go away after I stand and push the pain out. Of course, this can be completely eliminated on painkillers but I'm doing my best to not use any.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 13, 2018, 07:42:00 AM
So far I've done 2cm but I'm going to go as far as 6.5, but I am a bit of a softie with pain so I may stop earlier. Thanks again for checking on the PT! It would be a huge help man.
Do as much as you can, with yoru doctors co sent of course. 6.5 cm is not soo much for the pain we endure , perhaps 7.5-8cm? :) Good Luck brother, stay strong!. regarding videos, yet awaiting his aporoval.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 13, 2018, 07:44:03 AM
I'm finding it a bit sore near my a inside ankles of both feet after I lengthen. I'm trying to stretch as much as possible and then stand and weight bear on my feet. Sometimes if I do 3-4 turns in a day, the pin points and the bottoms of my feet get really sore. It will go away after I stand and push the pain out. Of course, this can be completely eliminated on painkillers but I'm doing my best to not use any.
Painkillers are not bad. just paracetamol if it is. what rate are you distractcing? perhaps talk to your doctor and go at like .5-.75mm a day? weight bearing is the key brother! walk/stand as much as you can!
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 13, 2018, 10:50:53 AM
Painkillers are not bad. just paracetamol if it is. what rate are you distractcing? perhaps talk to your doctor and go at like .5-.75mm a day? weight bearing is the key brother! walk/stand as much as you can!

That's basically where I am now, some days I will do 2 turns @ 90 degrees (0.5mm) or 3 turns, really depends on how painful my ankle gets. Yes I'm full weight bearing now, even walking around the downtown area of my city with a walker! After a tough first month things are really getting much easier, I feel I'm about 1/3 of the way lengthened as I'm around 2cm's now, so I think it'll be okay. And then expecting to keep my frames on for a few more months (3 maybe?) while things heal up.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 13, 2018, 11:13:06 AM
Yes Have been doing deca, week 6 now with it! I did not see much mineralization at week 3, due to it may be due to small dose(25mg/week). But however I find my pinsites much cleaner due to it and also feel lesss pain after walking/cycling. I am curious how the callous is now though :p.(would find out towards the month end visit)

I did not get your "stacked with testesterone" part though. I thought deca is testesterone!

I completely missed this, sorry man. No, Deca is deca and testosterone is testosterone. Both are anabolic steroids. Deca durabolin has very strong anabolic growth properties, however it's huge downside is that it will severely affect your testosterone levels, which they call "Deca-dck" and your libido basically doesn't work, but I am not sure what dosage this happens at. Anyways, this can be counteracted by using a testosterone dosage. Mostly my experience is in running steroids for muscle building, so yes 25mg/week is almost nothing compared to the dosages I'm familiar with. Mostly I am familiar with running Deca at 500mg/wk (!), I hope you're getting results out of it because I've never heard of it being used at 25mg/wk.

Here is some material to check.

https://onsteroidslab.com/deca-durabolin-cycle/

https://www.muscletalk.co.uk/test-e-deca-cycle-dosing-m1728631.aspx

Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 14, 2018, 07:12:15 PM
I completely missed this, sorry man. No, Deca is deca and testosterone is testosterone. Both are anabolic steroids. Deca durabolin has very strong anabolic growth properties, however it's huge downside is that it will severely affect your testosterone levels, which they call "Deca-dck" and your libido basically doesn't work, but I am not sure what dosage this happens at. Anyways, this can be counteracted by using a testosterone dosage. Mostly my experience is in running steroids for muscle building, so yes 25mg/week is almost nothing compared to the dosages I'm familiar with. Mostly I am familiar with running Deca at 500mg/wk (!), I hope you're getting results out of it because I've never heard of it being used at 25mg/wk.

Here is some material to check.

https://onsteroidslab.com/deca-durabolin-cycle/

https://www.muscletalk.co.uk/test-e-deca-cycle-dosing-m1728631.aspx
thanks for the info mate! are you gonna use any suppliments for bone consolidation?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 14, 2018, 07:16:56 PM
That's basically where I am now, some days I will do 2 turns @ 90 degrees (0.5mm) or 3 turns, really depends on how painful my ankle gets. Yes I'm full weight bearing now, even walking around the downtown area of my city with a walker! After a tough first month things are really getting much easier, I feel I'm about 1/3 of the way lengthened as I'm around 2cm's now, so I think it'll be okay. And then expecting to keep my frames on for a few more months (3 maybe?) while things heal up.
Damn, I forgot you are getting the nail :)consolidation should be not much of  deal  if you decent callous. I would say go till 7.5-8 bro if you body and doc permits!. And yeah changing the rate as per pain is a good idea. i have read people even skip days of lengthening.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 14, 2018, 08:59:31 PM
thanks for the info mate! are you gonna use any suppliments for bone consolidation?

Right now I am running low dose testosterone ~100mg/week just to fight muscle atrophy while I'm inactive, the during consolidation I will possibly run 4IU HGH with maybe 300/300 Testosterone/Deca. I'm still a month or two away from that, so I'll still need to think about it. Also, I won't be getting a nail, I'll be consolidating fully in external frames, so it could be another 3 months on top.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 15, 2018, 07:58:49 AM
Right now I am running low dose testosterone ~100mg/week just to fight muscle atrophy while I'm inactive, the during consolidation I will possibly run 4IU HGH with maybe 300/300 Testosterone/Deca. I'm still a month or two away from that, so I'll still need to think about it. Also, I won't be getting a nail, I'll be consolidating fully in external frames, so it could be another 3 months on top.
cool man! btw what us the brand for HGH? i might want to give it a try too :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 18, 2018, 05:20:41 AM
I've yet to find HGH in this city, but I have used Phizer Gintropin before and it worked great, but it was expensive.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 19, 2018, 12:15:16 PM
I've yet to find HGH in this city, but I have used Phizer Gintropin before and it worked great, but it was expensive.
Great Man! I would love to try it! are you sure there would be no sides?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on November 29, 2018, 03:34:42 PM
latest xrays(month 7 post op):
http://imgur.com/a/thqvjxd

callouses look much better. Pili says i would be off frames in 3 months, so 10 month circa for around 8.5+cm(wont tell how much exactly) ;). walking is good in terms of speed and comfort. No achilles loosening i can feel, i can stand on my toes too if i try. I have been dating a while, no one can tell my proportions are wierd nked too. I feel it looks much better now, proportion wise.

Also for some alignment issue, I would have to lengthen .75cm more on left leg at .5mm a day post which final correction/compession would be done on that leg. Dr Pili is a perfectionist when it comes to alignment, thats the main reason i chose him ;)

The other folks who lengthened with me too did similar amounts may be 1-2 cm less but 2 dint require atl as well.

This month i saw a significant callous imporvement. Apart from deca, I did these in addition to last month:
1. walked 1 hour in 4 sets of 15 mins
2. protien(60-70g) + bone broth while walking/cycling
3. calcium 500mg tablets spaced 3 hours apart, 4 times a day
4. vitamin d3, 20000IU 3 hours before first calcium dose.

things i plan to do:
1. low dose magnesium tablets
2. letrozole/hgh (planning to research soon)
3. LIPUS(yet to find under 200$ alternative for exogen)

If anyone has insights to 2,3. please let me know. I just read about letrozole, i dont know its efficacy for callous formation in cases of bone gap.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 29, 2018, 05:17:43 PM
Excellent work man, looks like you're well on your way.

I'll try my best to help you with your questions.

2) I ams till trying to get a grasp and understanding about estrogen (letro) and it's effects on bone metabolism, osteoblasts, and osteoclasts. From what I am reading, you actually want to have estrogen in your endocrine system to promote osteoblasts, but PLEASE research and make sure it's correct. My sources are as follows:

https://en.wikipedia.org/wiki/Bone_resorption

"Bone resorption rates are much higher in post-menopausal older women due to estrogen deficiency related with menopause.[7] Common treatments include drugs that increase bone mineral density."

https://courses.washington.edu/bonephys/esteffects.html

"Osteoclast apoptosis is regulated by estrogens. With estrogen deficiency, the osteoclasts live longer and are therefore able to resorb more bone. In response to the increased bone resorption, there is increased bone formation and a high-turnover state develops which leads to bone loss and perforation of the trabecular plates."

From that I am concluding that as you inhibit estrogen (main thing letro does) you have more bone loss. But, people will take letro to stop their plates from closing, allowing for growth. I'm a bit confused as well :|


3) I found this 2 month rental for a device in the UK. Is that where you're stationed?

https://www.amazon.co.uk/Exogen-Ultrasound-Healing-System-Months/dp/B07G35FMPL/ref=sr_1_1_a_it?ie=UTF8&qid=1542673401&sr=8-1&keywords=exogen

Let me know what you think.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cheekycabs on November 29, 2018, 05:35:07 PM
Also, as I mentioned before I'm running low dose testosterone, about 100mg/wk, maybe even less. This is to fight muscle atrophy and allow me to even gain muscle mass. A side of this is actually estrogen development, usually I run something similar to a letrozole, most bodybuilders do this to combat gynocomastea "male tits", but I've decided against it after reading similar articles such as above. As I said, I'm only running small doses. My x-rays are in my diary thread, and it sounds like I have good callous, but I'm nowhere near as far as you yet so I have time to go.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Neraluna on December 16, 2018, 05:32:11 PM
Hey man ,
I’ve been reading you’re story and I really want to thank you for sharing your experience with us.
I’m 24 years old Italian , I talked with Dr. Pili about two weeks ago , planning to do LL Tibia in September / October 2019. I am 161cm tall, and would like to add +8cm on my tibia.
I am so so nervous about it, i’m Afraid it might look unnatural  :( :( 

BTW how are you ? How much time left before frames removal ?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on December 16, 2018, 06:46:20 PM
Hey man ,
I’ve been reading you’re story and I really want to thank you for sharing your experience with us.
I’m 24 years old Italian , I talked with Dr. Pili about two weeks ago , planning to do LL Tibia in September / October 2019. I am 161cm tall, and would like to add +8cm on my tibia.
I am so so nervous about it, i’m Afraid it might look unnatural  :( :( 

BTW how are you ? How much time left before frames removal ?
8cm would not make you look unnatural, unless you have really long legs! Its doable, dont listen to the people on the forum. Most have not done LL at all, they spreaf rumors. Go for it, without overthinking. Pili is excellent! If I dont dp my femurs with albizzia, i would choose him.
I have 3-4 months to go may be.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Neraluna on December 16, 2018, 07:11:53 PM
8cm would not make you look unnatural, unless you have really long legs! Its doable, dont listen to the people on the forum. Most have not done LL at all, they spreaf rumors. Go for it, without overthinking. Pili is excellent! If I dont dp my femurs with albizzia, i would choose him.
I have 3-4 months to go may be.

Glad to hear that , thanks !
I wish you a great recover man.  ;)

How is your walking atm ? Do you feel any pain ?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on December 17, 2018, 06:54:30 AM
Glad to hear that , thanks !
I wish you a great recover man.  ;)

How is your walking atm ? Do you feel any pain ?
Thanks man :)
My walking is reallys good! It was always good except for 2-3 weeks when I was bedridden after ATL. It beccame normal again after they removed the pins for ATL.
Pain I get somedays, may be due to consolidation. Otherwise I am able to focus on work everyday :)
Most of it is already mentioned on my diary. Give it a read :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on December 28, 2018, 06:11:04 PM
Update: I have started using the Exogen 4000+(second hand) and since many are interested in faster consolidation, I would try a first hand experiment. So, my left leg, if you check the xray or read my older post, lags a bit in consolidation than my right. So I intend to use the device only for my left leg and report my xray every month to assess if its beneficial.
So far I have used it twice, and already one thing I noticed was, even after the first use, I feel less pain while putting more weight. Well may be its because ultrasound is also used for pain allevating.
I would update my subsequent xrays here for those who would want to make a decision about using a LIPUS device during consolidation.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on January 04, 2019, 07:16:52 AM
new xrays:
http://imgur.com/a/oZopGZ3

My left leg(right on the image) still has some deformity that needs to be fixed, hence correction phase on the left leg and right is doing quite well(almost healed). I would have a few more visits pending before frame removal. This is the second visit with just that leg correction. This time too he just adjusted the struts and also flipped the hinges, I would update it this worked next visit. Saying that, I want to be done with corrections already and just visit next for frame removal :/

Overall I see improvement in bone healing since calcium vitamin d3 routine, yet to determine the efficacy of ultrasound since its been very recent.

One of my other batchmates who did around 8( i guess everyone did atleast 8cm), would require ATL too since he overdid his own self made excercises for flexibility which gave him a bit of deformed foot, also he requires a medullary graft surgery since his bone growth was not upto mark.

I also asked Pili about albizzia vs stryde, where he expressed his strong preference of the latter. Also he prefers to do 8cm as 5cm + 3cm(consolidate at 5 and rebreak for 3) if there is a deformity and direct 8cm only if no deformity. He said it would cost 55-60k € for stryde. Might still prefer Betz overall seeing good success rates and cheaper price and 9-10 cm possibility instead of 8, but not Sure.

He told me a few albizzia and precise patients who came to him for nail removal, had a bit of deformity due to uncontrolled lengthening(above theory). He even mentioned a doctor Guichet's patient who had the above issue at frame removal(since Guichet too is in milan).

I like the fact that Pili is so specific about perfect results, which is why so much corrections. This is the reason I chose him, coz of perfect aligned bones ;)

Oh, and Happy New year to all.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cool on January 04, 2019, 08:31:24 AM
The right side on the xray looks a bit obviously out of alignment to the nked eye. Hope you are able to correct it fast. Good luck and happy new year!

please keep updating us about your progress!
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on February 08, 2019, 01:09:01 PM
feb update:

first the xrays
http://imgur.com/a/Z0eRxCf

Pili said the good news is i am like 2 months away from frame removal, and he would confirm that on my xray in next 3 weeks. I am now officially told to give up crutches gradually. I canwalk better unaided these days. Also if you see the left leg(right on the xray) got denser calllous than right(left on the xray). I could credit it to the face that i used exogen 2 times on the left. Initally left had weaker callous.

My axial deformity on left left(right on pic) is somewhat gone. Pili said it should be fine.

Also I went to guichet's gym and met simone(the user here) who did 7.5 with guichet. I could meet guichet in person since he had a surgery in london. simone seems to do awesome with running/jumping.

Just found it funny how people judge docs here based on 1-2 cases.
Title: Re: My Journey with Dr Pili(HEF)
Post by: cool on February 08, 2019, 01:42:15 PM
Great going fivetenneeded2016!

The left leg still looks a bit misaligned but I am no ortho and your doctor knows better. Maybe it will have no impact on functionality.

interesting about Guichet. yes it is best to visit doctors in person and meet real patients. But it is very hard to do so because everyone wants to keep this surgery private.

and I hope simone doesnt do femurs again. 12+cm on femurs alone might be a bit too much on anyone.
Title: Re: My Journey with Dr Pili(HEF)
Post by: myloginacc on February 09, 2019, 12:16:54 AM
Hey, FTN. How many times do you reckon you had to be on antibiotics during your LL journey?
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on February 09, 2019, 06:02:56 AM
Hey, FTN. How many times do you reckon you had to be on antibiotics during your LL journey?
I took antibiotics only when I feared I got pinsite infection and during ATL, when I had real bad pain at the pin site at the heels. I took painkillers for 4 days post op for main surgery, for weeks during atl and a day or two during consolidation.
Title: Re: My Journey with Dr Pili(HEF)
Post by: MirinHeight on February 09, 2019, 06:06:36 AM
feb update:

first the xrays
http://imgur.com/a/Z0eRxCf

Pili said the good news is i am like 2 months away from frame removal, and he would confirm that on my xray in next 3 weeks. I am now officially told to give up crutches gradually. I canwalk better unaided these days. Also if you see the left leg(right on the xray) got denser calllous than right(left on the xray). I could credit it to the face that i used exogen 2 times on the left. Initally left had weaker callous.

My axial deformity on left left(right on pic) is somewhat gone. Pili said it should be fine.

Also I went to guichet's gym and met simone(the user here) who did 7.5 with guichet. I could meet guichet in person since he had a surgery in london. simone seems to do awesome with running/jumping.

Just found it funny how people judge docs here based on 1-2 cases.

does your walking appear normal right now? or do you still limp slightly when walking unaided

Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on February 09, 2019, 09:03:15 AM
does your walking appear normal right now? or do you still limp slightly when walking unaided
I do limp a little and i guess that is coz i walk crutchless quite less. I need to find my gait and post that would post a video
Title: Re: My Journey with Dr Pili(HEF)
Post by: Cr7 on February 09, 2019, 09:34:32 AM
I finished reading your diary, some setbacks you had (atl surgery). Nonetheless a very good outcome. How do you feel now with those extra added height? Do you feel normal now reagarding pain.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on February 09, 2019, 11:20:40 AM
I finished reading your diary, some setbacks you had (atl surgery). Nonetheless a very good outcome. How do you feel now with those extra added height? Do you feel normal now reagarding pain.
Thanks man, I feel normal in terms of mobility and flexibility. I walk just as fast though on crutchres. Just waiting for crutches to be off and learn my new gait. I am still short though just under 170. No pain though.
Seeing how addictive each cm is, I cant wait to start my femurs probably this year end or next year starting.

Yes Atl was hard and painful but so far i dont have any problems. I would update once my crutches are off and i start a bit of running/sports reagrding the impact of everything.
Title: Re: My Journey with Dr Pili(HEF)
Post by: simons on February 11, 2019, 02:45:12 PM
Hey man ,
I’ve been reading you’re story and I really want to thank you for sharing your experience with us.
I’m 24 years old Italian , I talked with Dr. Pili about two weeks ago , planning to do LL Tibia in September / October 2019. I am 161cm tall, and would like to add +8cm on my tibia.
I am so so nervous about it, i’m Afraid it might look unnatural  :( :( 

BTW how are you ? How much time left before frames removal ?

Not to hackjack my friend fivetenneeded2016 discussion but since you are Italian if you want to visit Milan and arrange a meeting with Dr Guichet patients you can send me a pvt.
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on February 11, 2019, 05:31:37 PM
Not to hackjack my friend fivetenneeded2016 discussion but since you are Italian if you want to visit Milan and arrange a meeting with Dr Guichet patients you can send me a pvt.
Haha, its alright bro, it was really nice meeting you :) You have really impressive mobility/athletic functions, couldnt makeout you did LL. Guichet is now again one of my choices ;) Hope your femurs go well, see you in april again :)
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on March 02, 2019, 02:27:22 PM
update:
so i gradually am transitioning to walking unaided, hopefully by a week more I should be walking fulltime unaided.
Here is a video of how it looks, although I am yet to find my gait.(It would also have another video too ;))
http://imgur.com/a/X20B9Ag
Also Here is my xray taken 3 days ago:
http://imgur.com/a/k8SFNw1

I am yet to get comments on it from my doc, post which we would schedule the frame removal.
Title: Re: My Journey with Dr Pili(HEF)
Post by: Great321 on March 02, 2019, 04:55:22 PM
Congratulations ;D
Title: Re: My Journey with Dr Pili(HEF)
Post by: tombrada on June 04, 2019, 05:12:43 PM
Hiya - when are you planning to do your femurs may I ask?

Thanks!
Title: Re: My Journey with Dr Pili(HEF)
Post by: Great321 on June 04, 2019, 07:22:33 PM
update:
so i gradually am transitioning to walking unaided, hopefully by a week more I should be walking fulltime unaided.
Here is a video of how it looks, although I am yet to find my gait.(It would also have another video too ;))
http://imgur.com/a/X20B9Ag
Also Here is my xray taken 3 days ago:
http://imgur.com/a/k8SFNw1

I am yet to get comments on it from my doc, post which we would schedule the frame removal.

Great update! Can you please change the first link? It doesn't work for me...
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 06, 2019, 10:02:06 PM
Hiya - when are you planning to do your femurs may I ask?

Thanks!
as soon as i have the money for it😜😜
Title: Re: My Journey with Dr Pili(HEF)
Post by: fivetenneeded2016 on June 06, 2019, 10:03:32 PM
Great update! Can you please change the first link? It doesn't work for me...
Great, I delete the videos in a day or two after update(privacy measure) :/