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Author Topic: My Journey with Dr Pili(HEF)  (Read 13547 times)

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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #31 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.


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Surgery: April end under dr pili/catagni

Android

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Re: My Journey with Dr Pili(HEF)
« Reply #32 on: May 01, 2018, 06:16:28 PM »

Looking good! Maybe you can wrap the handles with small towel and tape it up.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

myloginacct

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Re: My Journey with Dr Pili(HEF)
« Reply #33 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.
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Argent_Lecter

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Re: My Journey with Dr Pili(HEF)
« Reply #34 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
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5ft5 (1,65m) to 5ft9 (1.75-6)

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #35 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.
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Surgery: April end under dr pili/catagni

myloginacct

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Re: My Journey with Dr Pili(HEF)
« Reply #36 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #37 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.
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Surgery: April end under dr pili/catagni

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #38 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.
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Surgery: April end under dr pili/catagni

myloginacct

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Re: My Journey with Dr Pili(HEF)
« Reply #39 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:

  • 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #40 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/
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Surgery: April end under dr pili/catagni

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #41 on: May 08, 2018, 07:29:22 PM »

any advice on how to manage the ankle/feet swelling?
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Surgery: April end under dr pili/catagni

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #42 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.
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Surgery: April end under dr pili/catagni

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #43 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 :)
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Great321

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Re: My Journey with Dr Pili(HEF)
« Reply #44 on: May 13, 2018, 09:18:01 AM »

Thanks for the udate!

What do your colleagues know about your frames?
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Knik

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Re: My Journey with Dr Pili(HEF)
« Reply #45 on: May 13, 2018, 12:41:39 PM »

great diary
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #46 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.
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Surgery: April end under dr pili/catagni

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #47 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)
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angel3894

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Re: My Journey with Dr Pili(HEF)
« Reply #48 on: May 14, 2018, 04:23:35 AM »

How much cm will you want to do?
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Android

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Re: My Journey with Dr Pili(HEF)
« Reply #49 on: May 17, 2018, 06:41:35 AM »

Dr Pili is yet to reply :/

Have you received a reply about your swollen leg yet?
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #50 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #51 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.
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Surgery: April end under dr pili/catagni

myloginacct

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Re: My Journey with Dr Pili(HEF)
« Reply #52 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #53 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.
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myloginacct

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Re: My Journey with Dr Pili(HEF)
« Reply #54 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #55 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.
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Great321

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Re: My Journey with Dr Pili(HEF)
« Reply #56 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?
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #57 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.
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Android

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Re: My Journey with Dr Pili(HEF)
« Reply #58 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!
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #59 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*.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #60 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 :/
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myloginacc

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Re: My Journey with Dr Pili(HEF)
« Reply #61 on: June 19, 2018, 12:46:14 AM »

It's been a little while.

How are you doing, FTN?

I hope things are well.
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Formerly myloginacct; had issues with my login account.
Yes I do want to add, before doing this surgery, ask yourself if you have optimized your life to the fullest extent possible (job/career, personality, etc).
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