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Author Topic: St. Petersburg Lengthening -- DISTRACTION COMPLETED  (Read 6047 times)

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guichet_chop

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #124 on: June 08, 2019, 05:54:51 AM »

jim ::

Just post video of jumping and running and show your scars. I will shut up forever about Russian surgeons and external methods. At this point i think you are misleading people by telling you can jump and run. 'jump' = 2 cm  off of the ground? 'run' =  40 meters? you made your choices i respect it and money was a huge criterion in your choices. there may be others in your shoes who would jump the gun and get LL quad lengthening with EXTERNALs thinking they can run and jump. it's not fair right?

And I am NOT tlannister. please speak objectively and not emotionally.
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guichet_chop

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #125 on: June 08, 2019, 06:03:50 AM »

here are some posts from poor Big Desision

"I have past two weeks,  and still having variety of pains(mostly nerve pain)
Stabbing pain from button of my feet,  electric pulse from my left heel and some bone pain are the strongest.

Lyrica doesn't seem to be working anymore. I take up to 4 pills a day.

Edema is still there,  as strong as it can be. "

"My feet are numb,  the right one is completely numb,  I hardly feel anything when I touch or massage it.

My feet are like dead flesh hanging from my body,  the right one is worse,  I can move my left toes and I feel more when I touch my left foot.
That being said, I don't have control over my feet,  so if I lift them up to the air with my hands and release them at once,  they will drop down to the floor.

I didn't have this problem when I had frames on.

I hope this clear things up. "

"Unfortunately I can't lift my feet with my hip,  the only way to lift any of my foot in using my arm.

I can move my left toe,  but right one is numbs,  no feeling.
That has happened after nailing...

And my knee contraction is pretty bad,  I do strength everyday.

Depressing time,  I have to drag my feet around,  I can't extend my feet using my knee when I'm on wheelchair. My right foot feels really heavy.

I get some random nerve pain on both feet,  makes me hope life will be back to my feet someday.. "


jim, california2 - please post some video evidence of you jumping and running. no one will be able to see you or identify you. Let us play it objectively. It is wrong to be prejudiced like me but this seems to be every Russian tale - get frames, lengthen great amounts, legs atropy like crazy, develop serious contracture and ballerina foot, get nailing done, get drop foot, go back home to north america. Now if you are seriously telling these are normal and don't affect final outcome, please show some evidence if you can. lots of people travel to russia to save money and this would make them take an informed decision. leaving the forum because of trolls will just make the trolls win and nothing else.
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tlannister

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #126 on: June 08, 2019, 11:00:28 AM »

I thought california had written his last post? please leave you big loser.

also the reason I am critisizing such diaries as this is, I used to read this and and believe the LL would be the challenge of my life.
Then I went to do internal weight bearing nail and the experience was like night an day. I was shocked I never experienced what people here warned me about.

I have to come realize there is no point in torturing ones with such medieval devices when there are better options out there. I want future patients to follow the path I took and end up with same experience and outcome.

Diaries like these do not represent the right outcome of modern CLL. We need to advice against going to Russia!
If in 5 years a new tech came out which let one do CLL in 1 month and recover 100% withing days. Then I too would advice against the weight bearing nail I used. Its called to act responsibly to the next generation of CLLers.

None of the russian frauds here can run/jump properly. Especially not california with 9 CM on tibia. What the hell is wrong with you? how can you even do such a thing at age of 60 with a freaking hip replacement?

Guichet_chop is third_world (he has another account named Fodawupa)

its funny guichet_chop (as fodawupa) started mocking another member he disagreed with. Then he (as third_world) started mimicking him to make fun of... slowly the new modus operandi consumed him. He (as guichet_chop) became disillusioned with this forum diaries and came to know the person he initially disagreed with was completely right. At long last the student became the master!

Carry on son, Im proud of you  ;D


« Last Edit: June 08, 2019, 11:21:16 AM by tlannister »
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Great321

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #127 on: June 08, 2019, 12:01:21 PM »

Hey guys,

So I visited a neurologist and did EMG test, I was told my peroneal as well as sciatic nerves are being damaged.

They can't do anything, I just have to wait and hope my feet get better.

I feel sorry for you. Good luck! What does that mean specificly for your everyday life now?
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fodawupa

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #128 on: June 09, 2019, 05:34:18 PM »


Guichet_chop is third_world (he has another account named Fodawupa)

its funny guichet_chop (as fodawupa) started mocking another member he disagreed with. Then he (as third_world) started mimicking him to make fun of... slowly the new modus operandi consumed him. He (as guichet_chop) became disillusioned with this forum diaries and came to know the person he initially disagreed with was completely right. At long last the student became the master!

Carry on son, Im proud of you  ;D

i am out of words for u ned_flanders .

leaving this forum is an enhancement to ur life. u seem to have been in a very bad state of mind and leaving this forums is a good start to recover. i hope u do. u can stop being bitter if u try.
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Hamiltonzac

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #129 on: June 14, 2019, 12:13:35 AM »

LOGISTICS

I am posting this public post in response to a couple of similar PMs:

Invitation Letter & Visa

Invitation Letters are more commonly "sold" rather than "issued".  You can get certain facilities to issue an invitation letter for free; however, there is a significant expectation that you will then use those facilities.

For me, it was easier to buy the letter.  I used "Fortuna Travel" but many provide this service.

Once I had my Invitation Letter in hand, I used the Visa e-service on the Russian Consulate website.  I opted for a 3-year multiple entry Tourist Visa (I am a medical tourist) for maximum flexibility.  This Visa allows me to stay in Russia for up to 180 days in one block.  If I need more than 180 days in one block; then, I will take the train to Finland, spend the night; then, return to Russia for another 180 days.  I can even use this Visa next year to return for nail removal, if desired.

Wheelchair

You will be hard-pressed to find a wheelchair in Russia with adjustable leg supports that permit you to extend your legs out flat.  I bought one off Craigslist--most airlines ship wheelchairs for free.

I recommend you practice with your wheelchair.  I fell from the chair twice--once just a few days ago going from bed to chair--something I have done without incident hundreds of times before.  I also flipped the chair over backwards once trying to negotiate a threshold--this could have been tragic--don't drink and drive.

Finding an Apartment

I found mine on AirBNB using the map search function.  I suggest you find something near St. George's Hospital because you will most often use St. George's facilities.  90% of possible apartments you identify will not be wheelchair accessible.

Or, you can do things the easy way by contacting the Property Manager I discovered--Alice Tsay (e-mail=3035358@gmail.com).  Alice specializes in medical tourism and wheelchair accessible, high-quality units near St. George.

Alice will also register your address as required and provide transfer to and from the airport (as well as provide many other services upon request during your stay).

Currency Exchange

You can carry up to $10K in cash into Russia -- that is what I did.  Make sure your bills are pristine--even a small 1/4 inch tear at the center fold will cause your bills to be rejected for exchange. 

All major banks will exchange currency at very favorable rates--I used Sberbank.  Just bring your Passport and registered address and the exchange should go smoothly.

Most Russians do not use savings accounts and keep their money on their person or stashed in a safe place.  Be like a Russian and lock your door when you leave the apartment.

Leaving Russia for Distraction

I was surprised to learn that a majority of patients leave Russia after the initial procedure--Kulesh told me many are never heard from again.

Perhaps if you are doing a small distraction and have a good follow-up team at home this will be OK.  However, if you plan to achieve significant distraction; then, the distraction process is ever-evolving until finished.

Many worry about frames bearing their weight.  I was surprised to learn that the internal pressure your legs put on the frames resisting distraction vastly exceeds body weight.  For example, your legs may exert 2000 psi against the frames resisting distraction; your additional body weight is negligible.

If you distract more than 6 cm; then, your rods will bend and may need to be adjusted or replaced.  My rods have been modified 4 or 5 times.  I currently have 4 rods per leg set in hinged fashion but I started with 3 straight rods per leg.

To me, the correct decision is to remain in Russia under care until your final nailing surgery is performed.  For me, that means about 4.5 months in Russia.

Scars

My scars are negligible.  Perhaps if I had shaved and bronzed legs I would notice some temporary discoloration--but I don't have such legs.

Meds & Supplements

I take a double-dose of high quality multiple vitamin and a double-dose of calcium supplement tablets and eat a balanced diet.  I don't know how much difference the supplements make, if any, but I have been healthy through the process.

You will receive all the meds you need from your medical team at prices much lower than in the USA.

I note two exceptions: 

First, you will NOT receive any narcotics outside the hospital.  If you have some leftover pain meds, I suggest you bring them.  I brought 30 Norco (10/325) and have two tablets left.

Next, Russian MDs do not accept the research that NSAIDs (non-steroidal anti-inflammatory drugs like Ibuprofen) interfere with bone regeneration.  If you accept this research; then, you should bring some Acetaminophen (Tylenol) with you because you will be prescribed Ibuprofen.




How do they get their rods out if they are not heard from again? I didnt understand what he meant by that part.
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fodawupa

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #130 on: July 29, 2019, 12:22:42 PM »

@california  the guy who was rude here has finally moved on it appears like. pls update if u feel like, we can all behave like adults here and agree to disagree.  :) it was just that one guy who spoiled the entire situation here
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Resilience

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #131 on: July 29, 2019, 01:46:44 PM »

Hi California2,

I also have a hip replacement. I was encouraged to do internal tibias because external frames could risk infection and premature hip implant failure. Did you consider that at all when you had the procedure done?

Kind regards,
Resilience

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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #132 on: July 29, 2019, 06:33:27 PM »

Foremost, there is no shortage of bad information on this forum.

Elective leg lengthening is a cosmetic procedure--by definition, that means the procedure is NOT medically necessary.

The process involves significant surgical procedures.  Every significant surgical procedure has risk up to and including death. 

The likelihood of dying from leg lengthening performed by a competent surgical team in a first world environment is remote--but not zero.  This means that if you decide on elective leg lengthening, you could die from a procedure that was medically unnecessary.

If you are worried about risks of the procedure; then, purely external lengthening remains the safest procedure available.  That is, external lengthening is known to have fewer complications AND a lower risk of infection.

Yes, people can and do fail to care for their external pins sites which can create pathways for bad things.  But don't be those people--keep your pin sites clean as instructed.

I personally know of no research linking tibia lengthening and premature hip implant failure.  Moreover, the notion seems unlikely.  Hip implants fail for a variety of reasons--most often repetitive stress.  No hip implant is designed to last forever.  However, I can conceive of no good reason why leg lengthening might hurry along the normal process of hip implant deterioration.

It is another matter to consider femoral lengthening with hip implants.  While lengthening over implants can be done, the risk of infection is far greater such that Dr. Solomin flatly advised against it except in cases of medical necessity.

Risks are further managed by having reasonable goals; actively managing the lengthening process in concert with your surgical team, and listening to your body.

What does listening to your body mean?  It means that you will feel all sorts of unusual things during the lengthening process.  You have to sort out whether something you feel is BAD or merely UNUSUAL.  When you conclude something feels BAD, stop lengthening and reassess.

For me, I continue to improve.  I am able (and approved) to bear full weight; however, due to balance issues and muscular atrophy, I am using two canes. 

I hope to be ambulating without assistance in two months (which will be about one year out from my initial surgery).


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Resilience

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #133 on: July 29, 2019, 07:34:29 PM »



Watch Dr. Rozbruch's video, get's interesting at 4:55. It's apparently common for hip implant patients to have retrograde femoral lengthening to correct LLD.

Wouldn't external tibial lengthening pose a greater risk to a hip implant than internal lengthening?
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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #134 on: July 29, 2019, 07:50:25 PM »

To Resilience:

Now it is you who is contributing bad information.

It seems some percentage of persons who post on this forum simply do not understand information provided.

You watched a video; then, concluded " It's apparently common for hip implant patients to have retrograde femoral lengthening to correct LLD."

Your conclusion is not in any way supported by the video you posted.  At the 4:55 hack, Rozbruch shows a woman with a screwed up hip which created a leg length discrepancy.

He then shows how a hip replacement reduced the leg length discrepancy.  He then zeroed out the discrepancy via tibial lengthening of one leg.  (Perhaps this was a case where femoral lengthening over the hip implant could have been considered because, by lengthening the tibia to correct the discrepancy, the patient's knees are at different heights.)

This video does NOT depict leg lengthening causing a bad hip.

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dr kulesh

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #135 on: August 02, 2019, 04:58:06 PM »

hello
usually I don’t see any reasons to interfere the clients discussion: I respect every community and I understand that nobody here asked my opinion. nevertheless I simply can’t stand aside and just look that 2 ex-patients are trying hard to protect me. I really appreciate that very much. Thank you, dear friends. You’ve done huge the honor to me. (they’re not fakes. Pictures of Jim_dabarber posted on the website straightlegs.ru (Cross-lengthening (LATN & LON).
I’ve spent one day reading this diary. I have no much time for that, but this discussion was extremely interesting. Many interesting persons, many interesting and very important ideas. Sometimes that contains very abusive and impolite language, but that doesn’t change the sense. I’d like just to pay attention to some moments: “money helps to get more successful treatment” - excellent! totally agreed. there are no reasons to start consultation with the words: “I have very limited budget, doc”. “after reading the diary, people could think, that it’s very easy – to get limb lengthening” – perfect! it’s extremely hard and difficult for the patient’s health and mind. especially – lengthening on 6, 8, 9, 13 cm at once (we had such cases). I always very impressed by the foreign patients: come to the different country with different people speaking different language for getting the hard and difficult treatment. they’re should be very brave. and very truthful comment to the photo: “after the lengthening the legs look not healthy at all” – of course! how should it look after 8cm (!) lengthening in case of not young patient? he will need time for rehabilitation. and I hope very much and wish him to restore the condition of the feet totally. excuse me for useless spending of your time: I’m always very interested in investigation of patient’s behavior during treatment and here I’ve found a lot of material.
about the patient, who’s got dropped foot… “I tried my best to listen to my doctors and exercise but most of these problems were out of my hand.” I’ve got permission from that patient to post his pictures. Unfortunately, the conditions of the forum provides pictures of 25KB – that’s nothing.

maybe you know, I don’t discuss treatment with patients by cell-phone, Skype and something like that: I need to store all the information. I use e-mail only and save every message from or to every patient. That is why I can prove every word about treatment of the patient:
in my first message on 27th of February 2018 he has got the file with information about treatment this file contains our recommendations and rules (file is applied). some sentences from it:

“You may go home for period of distraction and for period of fixation. Supervising by regional orthopedist is necessary during these periods.”

“The safest (fewest risk of complications) is Conventional Ilizarov.”

“Early postoperative period and Period of distraction: Manipulations (distraction): Obligatory: Start on 5th-12nd day after surgery (rate of distraction: 0,5-1,5 mm per a day).
We recommend: lengthening no more than 10% of the initial length of a bone”

“Trainings/physiotherapy: We recommend: training 2-3 times a week with trainer”

“In case of hypotrophic regenerate or strong pain syndrome, the distraction can be slowed down, temporarily stopped, prematurely complete; perhaps, one or several additional operations are required. As a rule, at this period patients need supervising by neurologist (80% of the patients) and by dermatologist (50% of the patients).”

“Period of correction: Trainings/physiotherapy: We recommend: training 2-3 times a week with trainer”

“In case of hypotrophic regenerate or strong pain syndrome, the correction can be slowed down, temporarily stopped, prematurely complete; perhaps, one or several additional operations are required. As a rule, at this period patients need supervising by neurologist (80% of the patients) and by dermatologist (50% of the patients).”

“Rebandages: Obligatory: rebandages by doctor once a week
We recommend: rebandages by doctor 2-3 times a week
We consider admissible: rebandages by patient 3 times a week (for the outpatients at home in different city)”

“During treatment we recommend to the patient every day send us information about: morning/evening temperature, pain level (from 1 till 10 points; 10 points is unbearable pain), duration of sleeping in the night, taken medicines, duration of training (with/without trainer), performed rebandages (with/without doctor/nurse), performed manipulations in the frame by patient/nurse/doctor), amount of distraction performed during the day for every segment, total amount of distraction performed during treatment and any other important information).”

after x-rays we’ve informed the patient that 10% from the length of his tibia is 4cm (that’s a usual number)

surgery was performed on 15th of December 2018 without any troubles. to avoid the ballerina feet during treatment feet were held by additional half-ring supports. that means, patient were not able to move the feet till frames removal

patient planned to perform lengthening of lower legs on 10 cm by LATN (message from 12th of December)
at 18th of December he left the clinic
at 22nd of December the lengthening (distraction) was started
at 28th of December he moved to his home country
at 31st of December (performed distraction - 9mm) in the daily report message he complained of the edema of the feet at first time
at 02nd of January he complained of “hard to sleep” at first time (duration of night sleep - 2 hours – very important parameter)
at 04th of January he complained on “hard to sleep” second time (duration of night sleep - 2 hours). were consulted by family doctor, got “pain-killers & sleeping pills”. Patient were not supervised by orthopedist at home. At all.
at 06th of January were performed x-rays. quality of the pictures were not enough to estimate the rate of lengthening
at 07th of January duration of sleeping 8 hours - good
12th of January – “feeling some pressure in the left foot”
13th of January – patient found out that instead of lengthening on 2cm he performed lengthening on 3cm (he sent me the photo with the frame and measure tape). he couldn’t explain that

14th of January – he reported about pain, pressure and numbness on the left leg, areas like knee, ankle and sole of foot
15th of January. were performed x-rays not appropriate quality, 16th of January I recommended to decrease the rate of lengthening (distraction) 17th of January I recommended to decrease the rate of lengthening (distraction) second time
19th of January he complained of severe edema of the feet and sent the pictures. I’ve recommended him to get the consultation by local orthopedist – was not performed

22nd of January – complained of “burning pain on the left foot”
24th of January – strong burning pain
27th of January – very strong burning pain
29th of January – “my foot burns a lot”, “I don’t know what to with it” I recommended to reduce the rate of lengthening till 0,75-0,5 mm per a day, consultation by neurologist (was not performed) and by angiologist (was not performed)

30th of January – he informed me “I’m going to slow down lengthening from tomorrow , from 1mm to 0,75mm”
31st of January – “unbearable shooting pain and burning”, (distraction – 39.75mm)
my answer: I can’t say much without looking at your legs, remembered, and he’s close to the more or less “safe” amount of lengthening and informed him, that after this limit the distraction should be harder
from the patient: “waiting for the orthopedist, don’t know when I can visit one, it might take several months. unfortunately it’s not possible to see neurologist either, they said June 5th is the earliest I can see one”
01st of February – I remembered to the patient that “for the effective treatment he needs right now (emergency): supervising (not visit) by the experienced in limb-lengthening and deformity correction orthopedist, consultation (and supervising) by neurologist”, “unfortunately, I cant cure you from Russia even if you’d send me satisfactory x-rays (I haven’t got yet)”, “I hope very much, you’ll get the appropriate treatment as quick as it possible”, "by the way, for the emergency help I’d recommend you to arrest the lengthening for both legs and get the examination by the orthopedist and neurologist today or tomorrow”
from the patient: “I can’t visit a specialist here anytime soon, health care system in here is different” he slowed down the distraction till 0,5mm per a day
02nd of February - I repeated to arrest lengthening. from the patient: “ my family doctor is all I have”. I recommended to remove the distraction “5mm at first” (to perform shortening)
03rd of February patient arrested the lengthening (he's got lengthening on 4cm for every leg). shortening were not performed
04th of February he’s got new x-rays. it was revealed the incorrect performing of the lengthening (right leg were shorter). Patient informed me, he plans to perform lengthening till 7,5 cm
05th of February – patient informed me, that he will proceed the lengthening – 1mm per a day for the right leg and 0,75mm per a day for the left leg
06th of February he restarted lengthening and informed that pain disappeared
07th of February he reported about not strong pain syndrome, last rebandages were performed 1 week ago. I remembered, that it’s not accorded to our recommendations
08th, 09th, 10th, 11th, 12th, 13th, 15th, 16th, 17th, 18th of February he informed about insignificant pain without problems with sleeping, he was taking pain-killers and sleeping pills.
10th of February he informed me, he will arrive on 24th of February (performed lengthening - 5,0cm right leg and 5,5cm - left)

14th of February he asked me to answer the questions from his girl-friend. “she wants to talk to you directly to have piece of mind, I explained to her this frame are straightening bones and make them longer”
her questions was:
1 – how are frames straighten his legs and what the issues before they are correcting?
my answer: had he problems before surgery? we didn’t plan deformity correction. just correction of misalignment caused by cosmetic (!) lengthening of the lower legs
2 – is there any risks after the frames come off?
my answer: yes: refracture, deformity …
example not gaining back full walking ability or blood issues?
my answer: its possible: patient is going more lengthening instead of recommended
3 – how much physic should he be doing in a day?
my answer: till getting full range of motion
4 – do you have a website with examples or testimonials of Marcus’s procedure
my answer: Marcus got files with clinical cases with files about treatment before surgery
She thanked me and didn’t ask any more
15th of February patient remembered to me, that he wants to go up till 7,5cm. I remembered that we recommend no more than 10% of the initial length of a bone.
17th of February – patient slowed down the rate of distraction because of strong pain
18th of February – he had complained on “burning on his feet” and problems with the extending of the knee joints; duration of night sleeping – 5 hours. I recommended to stop the distraction at all (third time) (amount of performed distraction - 5,9 right, 6,3 left)
19th of February – he had complained on “burning pain on his feet”. I asked about the distraction. In a daily report he posted 1.25mm for every leg
21st of February – he complained: “Every time I want to lay down or straighten out my legs, top of my feet starts to burn and hurt”. I answered: “that’s over tension of the nerves, I recommend you to stop lengthening”. he stopped
22nd of February – he asked me for permission to proceed lengthening. Professor Solomin remembered him, that “severe pain is contradiction for lengthening”
24th of February – the patient has remembered to me, he didn’t reach 7cm, he need
25th of February – he arrived to St.-Petersburg
26th of February – by the x-ray pictures performed in St-Petersburg it was founded that reached amount of lengthening was 6cm. his feet were very swollen. Moving of the toes were not revealed. Diagnosis by neurologist: traction lesion of tibialis and peroneal nerves of both legs. Patient decided to restart the distraction till 7cm.

28th of February - he informed me, he performed distraction 1mm for every leg and asked to increase the distraction by 0.25 because “I need to take my frame off no longer than end of third week of March. So I need to make sure I finish the lengthening and correction before that time”. And he informed me, that his pain is low.
01st of March patient informed me that he’s performing the distraction 1 cm (!) per a day. He insisted that I recommend him that, but, I think, he just couldn’t understand the difference between cm and mm. When I saw him next time, his legs and frames were not lengthened on couple centimeters.
02nd of March - in a daily report he informed me: “Amount of distraction performed during the day for every segment: approximately 1cm”, “Total amount of lengthening: R: 6.4 cm L: 6.4cm”
03rd of March - in a daily report he informed me: “Amount of distraction performed during the day for every segment: approximately 1cm”. Total amount of lengthening: R: 6.5 cm L: 6.5cm
he planned to reach 7cm till 8th of March and get the nailing surgery
he kept distraction till 8th of March
08th of March - after x rays (shown amount of lengthening for right leg 66mm, left leg 71mm) patient took a decision to keep lengthening till 74 mm
09th of March he started the correction. The nailing surgery was planned on 17th of March. Patient booked a flight on 21th.
correction were finished on the evening of 15th of March (we planned the smoother rate of correction to perform it very accurate). We’ve started frames reassembling (preparing for the surgery) at 19.00 in the evening and finished that at 01.30 in the morning: we wanted not to perform this difficult procedure in the day before surgery and saved 1 day for the any troubles.
While reassembling the frames patient ordered to perform the additional lengthening for the right leg – 5mm at once. He was explained that should be extremely risky. nevertheless, he insisted and confirmed that. all members of the team were really shocked at that moment: late night, patient moaning from the pain and asking: “5 millimeters more! I need that!” (this frase only I can't proove by mails)
at 01.32 in the morning I’ve sent the message to the patient and strongly recommend him to remove no less than 5mm lengthening on every leg (wasn't performed)
at 05.46 in the morning I recommended him to come to the hospital on 16th of the March instead of 17th of the March to relief the pain – he didn’t.
17th of March nailing surgery were performed excellent. during the surgery frames were removed. frames held feet in a right position by the screws. that means, patient couldn’t move the feet all the period of frames treatment. after removing the frames patient couldn't move the feet

So: I’d not say, if the patient followed the recommendations

What should I say?
1st: we never perform the cosmetic surgery without order and insisting from the patient
2nd: we never recommend the cosmetic lengthening more than 10% from the initial length (world-wide information)
3rd: we always inform in writing about complications. if patient plan to perform the lengthening after 10% the complications not “may be”. that “must be"
4th: we don’t perform lengthening. patient performs it. he determines the amount of lengthening and informs us. we comment his manipulations and his condition according to daily reports and x-rays
5th: we don’t damage the nerves and vessels during surgery. traction damage caused by over lengthening before second surgery and increasing after second surgery by additional edema
we always recommend Conventional Ilizarov – “1-surgery way of treatment” – is the safest. no second surgery – no additional risk to get additional complications

and: all our team wish to the patient the quickest and complete recovery.

try to understand, please: should be accurate playing with fire: using it accurate you’ll be warmed during cold (like California2 and Jim_dabarber), using it thoughtlessly, you may hurt yourself
best regards, dr kulesh

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Heightseeker1998

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #136 on: August 02, 2019, 05:50:47 PM »

After this reply! I feel so heartbroken.
I am not sure what to believe and what not to believe in this forum. At times everyone look correct & at times all look fake. I am not sure where to find more resources which are not influenced by conspiracy, lies and fake users or doctors.

I want to believe Dr Kulesh is posting himself. If he is, all other information or negativity seems obsolete.

Once again at times, I feel all conspiracy seems correct but on the other hand, We are just puppet of this forum who don't know what to trust 😭
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sylar94

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #137 on: August 02, 2019, 06:10:22 PM »

Hi dr kulesh,

What is the reason that russian doctors do not provide PRECICE / Stryde?

It seems that russian doctors make no effort in this direction, WHY?

Is it because its not profitable to you? Because no one would be able to pay that high price for LL

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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #138 on: August 02, 2019, 09:03:40 PM »

To clarify -- Dr. Kulesh is not talking about my case--my initial surgery was September 2018.  I do not know which case he is discussing but conclude he is explaining why some surgical outcomes are different than other outcomes.

To Sylar94:

By my understanding, internal lengthening is not yet approved in Russia.  I understand that Dr. Kulesh's team is trained in internal lengthening; however, Russia's version of a medical regulator has not yet approved the procedure.
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Big Decision

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #139 on: August 03, 2019, 11:05:24 AM »

Dr kulesh,

Discussion between doctors and patients are absolutely  private,

And should not be shared to public in any form.



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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #140 on: August 03, 2019, 04:30:38 PM »

To Big Decision:

Dr. Kulesh did not identify the patient he discussed. 

Are you identifying yourself as the patient discussed above?

Even if you are acknowledging that Dr. Kulesh's comments are about you (Big Decision), you still have not actually identified yourself--you merely related comments to your anonymous moniker.

Moreover, under your anonymous moniker, you volunteered all sorts of personal information so you should hardly complain if other information is anonymously revealed because all such information is still anonymous.

Stated differently, if you want your medical information to be private; then, keep it private--don't post it on a public forum.  If you chose to publicly post your medical information anonymously (as you did); then, don't act surprised when other information is published anonymously.

Posting accurate information without identifying yourself is the point of an anonymous forum.  If Dr. Kulesh was addressing your case (without identifying you), was anything reported by Dr. Kulesh inaccurate?

Whether or not you are the patient discussed, I hope Dr. Kulesh's comments will help you and others.
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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #141 on: August 03, 2019, 05:12:25 PM »

I do not usually respond to private messages because I am nobody's private resource for limb lengthening information and most private requests for information duplicate information posted or questions asked by others so if you have a question, please post it publicly.

I don't monitor this forum regularly (and planned to stop monitoring it all together); however, recent posts got me involved again.  Consequently, I noticed I have several messages--most have already been addressed but I want to take this opportunity to address the following part of a message:

"I noticed you stopped at 173 cm. How come?"

I want to address this topic because I note that some posters are writing things like "the limit for lengthening is 8 cm period."

There is no theoretical limit for leg lengthening.  Some children have successfully lengthened a limb by 30 cm.

There is a practical limit for lengthening and sometimes a mechanical limit for limb lengthening.

The mechanical limit arises because some internal devices can extend only 8 cm; ergo, some people incorrectly understand the physical limit to be 8 cm. 

Most surgeons advise that 10% lengthening is the safe limit.  That is, if the bone being lengthened is 80 cm; then, going to 88 cm is generally considered a safe goal. 

I lengthened about 23-25%.  Why did I stop?  First, I exceeded my goal.  Second, my body told me I pushed things as far as I could or should.  Third, while most surgeons don't get too bent out of shape about 15% lengthening; 25% is not 15%. 

As you distract, your body resists distraction and begins to complain.  When your body complains loudly about 1/4 mm distraction so that you can only complete 1/2 mm per day, you should seriously think about locking in the gains you've made and stop.
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Android

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #142 on: August 04, 2019, 01:12:47 PM »

Popping in to say hi, great updates! I believe we met; you liked your room cold, we tried to troubleshoot your phone line, and you gave me some chocolates.

Throwing in a fact nugget: peroneal nerves (e.g. nerves in the hands and feet) regenerate, takes anywhere from a few months to a year and a half. Stay strong, BD.

I'm not quite convinced that Dr. Kulesh registered and posted here. He's not a man of many words, I just doubt he'd spend all this time here.

P.S. -- I'm doing much better, I just don't feel like hanging out here since this is where I came to kill time during work before CLL. I have so many other fun things to do...

Edit: MAYBE it is Dr. Kulesh's account. If it is... I advise you to stay away! This is a wild place.
« Last Edit: August 04, 2019, 03:09:22 PM by Android »
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Knik

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #143 on: August 04, 2019, 02:58:51 PM »

Popping in to say hi, great updates! I believe we met; you liked your room cold, we tried to troubleshoot your phone line, and you gave me some chocolates.

Throwing in a fact nugget: peroneal nerves (e.g. nerves in the hands and feet) regenerate, takes anywhere from a few months to a year and a half. Stay strong, BD.

I'm not quite convinced that Dr. Kulesh registered and posted here. He's not a man of many words, I just doubt he'd spend all this time here.

P.S. -- I'm doing much better, I just don't feel like hanging out here since this is where I came to kill time during work before CLL. I have so many other fun things to do...


great news !
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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #144 on: August 04, 2019, 04:53:53 PM »

To Android:

Yes, we met as you described.  Your room was toward the end of the hall--mine was near the middle.  I am glad to hear you are doing well.  I hope you stayed in touch with the slender nurse--you two looked good together!

Dr. Kulesh did write the lengthy post above--apparently he was curious and had some time on his hands.  I know it is him because he and I talked about the forum while I was in Russia.  Last week he asked me for the forum address; then, sent me an e-mail to inform me that he wrote on the forum.

Like you, I cautioned him to be careful because folks on the forum can be vicious and the forum is full of trolls with agendas.

While I don't know his motivation or purpose for posting because I did not discuss these aspect with Dr. Kulesh, I surmise he was surprised by both misrepresentations and unrealistic expectations and wants to correct the record. 

I doubt he appreciates how challenging it can be to correct the record when anonymous trolls have unlimited time to craft a false narrative that supports their agenda.

This is getting a bit soapboxy so let me end by reiterating that it is good to hear from you (Android) and I wish you continued success.

I also continue to wish Big Decision continued healing and recovery.  I wrote before that Bid Decision might be proof that you can do lots of things against medical advice but still successfully lengthen (albeit very uncomfortably).
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cena

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #145 on: August 04, 2019, 05:41:25 PM »

Its quite unprofessional to copy paste doctor's notes of a patient. A patient reporting complications faced is not justification for a doctor to paste the entire notes. The patient here didn't even blame the doctor, he was merely reporting his problems. He seems to have copy pasted that text without even summarising or paraphrasing or generalising it! This would probably not even be legally allowed in the USA but may be is fine in Russia.

Doctors being on patient forums is not exactly comforting. dr Kulesh should try to not spend time here.

Because of this incident I am quite sure this will be the last interaction of the patient he referred to here. I hope that was not the intended goal!
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cena

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #146 on: August 04, 2019, 05:55:41 PM »


Stated differently, if you want your medical information to be private; then, keep it private--don't post it on a public forum.  If you chose to publicly post your medical information anonymously (as you did); then, don't act surprised when other information is published anonymously.


What an argument. What and how much someone posts about themselves publicly is entirely up to them. Other people don't have a right to append additional information!

For example, just because you choose to reveal that you are from California and are 50 years old that doesn't mean your doctor can pop in here and add that you are asthmatic and are an expert in lawn tennis. If someone you know IRL came here they would be more sure that it is you with the additional information known! Is this something you can comprehend?
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tlannister

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #147 on: August 14, 2019, 01:33:53 PM »

To Big Decision:

Dr. Kulesh did not identify the patient he discussed. 

Are you identifying yourself as the patient discussed above?

Even if you are acknowledging that Dr. Kulesh's comments are about you (Big Decision), you still have not actually identified yourself--you merely related comments to your anonymous moniker.

Moreover, under your anonymous moniker, you volunteered all sorts of personal information so you should hardly complain if other information is anonymously revealed because all such information is still anonymous.

Stated differently, if you want your medical information to be private; then, keep it private--don't post it on a public forum.  If you chose to publicly post your medical information anonymously (as you did); then, don't act surprised when other information is published anonymously.

Posting accurate information without identifying yourself is the point of an anonymous forum.  If Dr. Kulesh was addressing your case (without identifying you), was anything reported by Dr. Kulesh inaccurate?

Whether or not you are the patient discussed, I hope Dr. Kulesh's comments will help you and others.

the state of this forum....

a "doctor" creates an account on a online forum to attack. totally unprofessional.
then the doctor proceeds to post patient logs.
doctors patient, big decision, finds it inappropriate that a surgeon can post such private things online.

Then here comes the 60 year old in-real-life loser, california2, to defend the surgeons actions. Like he was in some fking court.

To readers of this diary, if you havent already drawn a mental picture of what kind of sad pathetic loser california is, then i dont know.

Lets summarize:
- almost 60 year old guy, at this age who is supposed to have family, even grandchildren and wife, goes to russia to lengthen tibia 8cm+
- has hip implants
- leg looks deformed in all pictures
- masquarades on the forum as a successful LL outcome to give youngsters ill advices.

California if there is something called Karma you will have it coming you way pathetic loser. Get the fk off this forum and delete this diary unless you can actually prove you can ever jump or run again. You cant, you will never be able to do that.



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California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #148 on: August 16, 2019, 04:01:04 PM »

Again, I generally do not respond to personal messages because they tend to request information already posted; and, personal messages keep information away from others who have the same questions.

So, if you have a question of me, please post it openly.

From Gustavklimt

Q:  I noticed you swell a lot.  Are you feeling better now?

A:  Yes, my swelling is long gone.

Q:  How was your IT band. Because you lengthen quite a lot.

A:  The iliotibial band (IT band) is a tendon on the outer thigh that runs from the top of the pelvis (ilium) to the top of the tibia.  It helps keep your hips and knees stable.

Because the IT band is a tough and thick tendon, it sometimes is a problem in femur lengthening.  I lengthened my tibias--my IT band is not affected.

Q:  Regard to doing external is safer I wonder why is that?

A:  Purely external is known to be the safest form of leg lengthening--per my understanding, this is so mostly because it involves a single surgery and the surgeon has great control of the lengthening process and alignment.

It stands to reason that adding LON to external lengthening would undermine some of the control benefits of pure external lengthening.

LATN preserves all of the control but adds a second significant surgery which likely undermines some of the saftey benefits of pure external lengthening; however, I am aware of no good studies that compare the relative safety and effectiveness of external LON or LATN with internal lengthening.

From T:

Q:  The costs of LATN on both tibias and femurs, staying at hospital, staying at hotel/apartment for months and registering Visa cost you $22,000, am i right?

A:  Yes and no.  I lengthened only tibias by about 9 cm.  The approximate total cost of the procedure and all medically related costs was $15K.  All other costs including airfare, local transportation, meals & groceries, an apartment for 4 months, Visa, etc. was about $7K.

I continue to recover well.  Recovery has been a slow but steady process.  I am walking unassisted now and my local medical team anticipates they will stop following me after my next appointment in October.

Remember, the average "full" healing time is 2 months for every centimeter of lengthening so I should not expect to be fully recovered until March 2020 even though I may appear fully recovered before that time.
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fodawupa

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #149 on: August 16, 2019, 06:15:32 PM »

my objective questions  california 8)

1) what is ur expectation of full recovery? which activities do u expect to perform?

2) will u post a anoynymous video of recovery after LL? not for trolls but for real LL community to learn something objectively from ..
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"Gammal kjærleik rustar inkje."

California2

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Re: St. Petersburg Lengthening -- DISTRACTION COMPLETED
« Reply #150 on: August 16, 2019, 07:00:31 PM »

To Fodawupa:

Many leg lengtheners seem to worry about not being able to do all pre-lengthening activities after lengthening.  Bottom line is that time will tell.  My expectation is that by March 2020, I will do all activities that I did before lengthening.

My next x-rays will be in October and I will post them.  If I can figure out how to make and post an anonymous video, I will do so at that time as well.  My expectation is that I should be looking pretty normal by October even if I am not technically fully recovered until March 2020.
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