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Author Topic: St. Petersburg Lengthening -- DISTRACTION COMPLETED  (Read 4796 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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Surgery due for 2019 in Russia with Dr. Solomin/Dr. Kulesh.
Morning height: 168cm Afternoon: 166cm
Goal: Femurs and Tibia, 12-15cm LON
20 year old male.
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