St. Petersburg Lengthening -- DISTRACTION COMPLETED

I was going to write a diary but decided not to due to dumb-ass comments that caused me to ask question whether the effort of a diary was a good use of my time.

Nonetheless, several folks poked me for an update so here it is...

I arrived St Petersburg on 11 Sep 2018 with no specific goal in mind except longer legs.

I met with Dr. Kulesh a few days later who discouraged bilateral femurs and recommended bilateral tibias.  After hearing his points, I tended to agree.

I met Dr. Solomin a couple of days later.  He opined that femurs could be done (it was possible), however, he strongly recommended against it due to my hip replacement.  He recommended no more than 15% lengthening. 

Dr. Solomin also recommended LATN rather than LON because he would be able to use a larger, more stable nail with LATN.

I had surgery on 21 Sep 2018 and began distraction on 01 Oct 2018.  I am at 7.9 cm.  Hexapods will be installed next week and Dr. Kulesh will ease me to my goal of 8.5 cm (23%) over the next two weeks.

My LATN surgery will be 20 Jan 2019 at the Medem Clinic.  Kulesh and Solomin are not currently using the municipal clinic at St. Elizabeth and will work solely with Medem for elective lengthening for the immediate future.

Distraction was easy through 3 CM.  At 5 cm, my ankles lost all flexibility and equinas began to be apparent.  I accepted that stretching alone would be insufficient and accepted Achilles Tendon Lengthening (ATL).

Kulesh is developing a new procedure for ATL.  In "regular" ATL, your tendons are partially severed, your leg is forced into position, the tendon stretches and tears, and the surgery is done.  Significant risks are tendon rupture and over or under stretching.

Kulesh does the z-plasty; then, installs hexapods.  In this manner, your tendons PLUS all soft tissue gently stretches over a period of weeks.  Risk of rupture is essentially eliminated and the lengthening amount is exact.  The downside is the procedure is painful.

The total cost of my procedure, including everything--surgeries, nails, meds, hospital, airfare, transfers, taxi, apartment, food, etc. will be approximately $22K.

Quote from: California2 on January 04, 2019, 01:43:35 PMI was going to write a diary but decided not to due to dumb-ass comments that caused me to ask question whether the effort of a diary was a good use of my time.

• Lengtening over 15% - check
• Going to russia for LL - check
• Opting for ATL - check

gee, i wonder who is the dumb-ass here...

Oh great.  Lucky me.

Another uniformed, opinionated, dumb-ass adding his two cents!

Sure, don't go to St Petersburg and miss out on scientists who are also the foremost elective leg lengthening surgeons in the world, who enjoy decades of experience, use world-class facilities and techniques they pioneered; not to mention the extremely positive and beneficial cultural experience.  Dumb-ass.

What are the risks of lengthening over 15%--and more importantly, how do you monitor your distraction-by-distraction progress to assess whether you are at risk?  Do you think maybe the daily opinion of the top surgeons in the world as to whether it is prudent to continue distraction might be helpful?  Dumb-ass.

What are the negative consequences of ATL performed properly?  Oh, none?  Dumb-ass.

Pull your head out of the sand and accept that the experts are the guys like Solomin and Kulesh who have a current caseload of about 500 patients combined and have handled that caseload for decades. 

No one is an expert because they did some Internet research or had leg lengthening.  Use the information you learn to guide your decisions only.

I approached this adventure by understanding that I had a goal but would listen to the experts; thus, I might not achieve my goal.  I have been blessed to work closely with my surgeons--literally, daily interaction, and have been able to safely achieve my goals even though my goals exceed what some understand to be "safe" limits.

Every body is different.  Monitor your body.  Stop when your surgeon and your body tells you it is time to stop.

have you had a hip replacement? what your height and age ? im not judging but you gotta be persistent

I am 56 years old.  My starting height was about 164 cm and my finished height will be about 173 cm.

I have bilateral hip replacements which is naturally a complicating factor for femur lengthening.  That is, femur lengthening can be done internally, or purely externally, or externally with LON or LATN using an anterior approach; however, risks, including infection, are far greater.

Professor Solomin advised me not to consider elective femur lengthening under the circumstances--he could do it if a medical necessity justified the risks but no such justification exists in my case.  Thus, my focus turned solely to tibias.

I am very satisfied with a finished height of 173 cm and do not intend to do anything else.

Persistent--probably.  But more I believe that you have to commit to a specific course; then, plan and prepare to make that course successful.  Many people who start the procedure do not seem to consider what life will be like during the procedure, do not adequately plan for that temporary life; then, encounter problems that should have been anticipated; thus, success is impaired.

I spent significant time planning and preparing--finding the right apartment, obtaining the right equipment, getting in the right supplies when I was ambulatory; then, testing my set-up before surgery.

For example, even though my apartment has ramps and an elevator, it also has 3 high thresholds I must cross to get from my apartment to the outside and vice-versa.  While I could still walk, I made dry runs in my chair to see whether I could actually get to the store, etc.  I found that I could not get out these doors because they were too heavy.  I needed to find a way to prop open these doors while I got my front wheels over the threshold.

The next day while out walking, I found a small piece of solid construction debris that I can insert at the door hinge to hold open the door while I use both hands on the main wheels to clear the threshold.  If I didn't do this before my surgery, I would not have been able to ever leave the building on my own.

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 ([email protected]).  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.

im still amazed how you could do LL after hip replacement. I always thought that after replacement you basically always use crutches etc.

So far as I know, one returns to full functionality after hip replacement.  I can only speak for myself, but I was on the elliptical 3 days after surgery and doing everything I did before within 6 months of my second replacement.  I had an intentional 3 month gap between replacements so one hip would be healed before I started surgery on the second hip.

Most surgeons I spoke with about femur lengthening were more concerned about deep infection than they were about their ability to lengthen below or around the femur stems.

Received a PM stating in part

Second - i am kindly asking you to send me documents - of course without any your personal data - just the text of contract and invoice for payment
I want to see all prices and terms before i talk with that doctors - Kulesh and Solomin

I don't work for Kulesh and Solomin.  If you want details from Kulesh and Solomin--ask Kulesh and Solomin.

Kulesh publishes a lengthening file that contains price lists and all kinds of information.  If you want that information, ask Kulesh for it.

happy New Year !!
and congratulations, we know how difficult this is, a great victory friend!
I have a little doubt LATN has a maximum capacity of how many centimeters?