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Author Topic: My Journey with Dr Pili(HEF)  (Read 13223 times)

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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #62 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.
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Surgery: April end under dr pili/catagni

Great321

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Re: My Journey with Dr Pili(HEF)
« Reply #63 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?

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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #64 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.
« Last Edit: June 23, 2018, 10:16:43 AM by fivetenneeded2016 »
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Surgery: April end under dr pili/catagni

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #65 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
« Last Edit: June 23, 2018, 10:18:58 AM by fivetenneeded2016 »
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Great321

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Re: My Journey with Dr Pili(HEF)
« Reply #66 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?
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myloginacc

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Re: My Journey with Dr Pili(HEF)
« Reply #67 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.
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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).

fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #68 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.
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Surgery: April end under dr pili/catagni

totallyred

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Re: My Journey with Dr Pili(HEF)
« Reply #69 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?
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #70 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 ;)
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totallyred

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Re: My Journey with Dr Pili(HEF)
« Reply #71 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!
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #72 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!
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fokid

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Re: My Journey with Dr Pili(HEF)
« Reply #73 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #74 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.
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Android

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Re: My Journey with Dr Pili(HEF)
« Reply #75 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.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Body Builder

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Re: My Journey with Dr Pili(HEF)
« Reply #76 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.
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Android

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Re: My Journey with Dr Pili(HEF)
« Reply #77 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.
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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 #78 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #79 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.
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #80 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
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lucindaris

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Re: My Journey with Dr Pili(HEF)
« Reply #81 on: July 21, 2018, 06:19:30 PM »

So in your case it was 5.5 cm and after that ATL was necessary?
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #82 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
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Bruce Wayne

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Re: My Journey with Dr Pili(HEF)
« Reply #83 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.
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The Dreamer

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Re: My Journey with Dr Pili(HEF)
« Reply #84 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
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Bruce Wayne

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Re: My Journey with Dr Pili(HEF)
« Reply #85 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.
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lucindaris

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Re: My Journey with Dr Pili(HEF)
« Reply #86 on: July 22, 2018, 12:43:15 AM »

So your buddy did 9.5cm in tibia? Wow
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The Dreamer

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Re: My Journey with Dr Pili(HEF)
« Reply #87 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)
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #88 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.
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Surgery: April end under dr pili/catagni

The Dreamer

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Re: My Journey with Dr Pili(HEF)
« Reply #89 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 ?
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Bruce Wayne

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Re: My Journey with Dr Pili(HEF)
« Reply #90 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!
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #91 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
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fivetenneeded2016

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Re: My Journey with Dr Pili(HEF)
« Reply #92 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
Logged
fingers crossed.
Surgery: April end under dr pili/catagni
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