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[California2]

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.

[tlannister]

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.

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

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

[California2]

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.

[doomsday]

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

[California2]

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.

[California2]

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.

[doomsday]

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

[California2]

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.

[California2]

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.

[6'2_dream]

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?

[California2]

Perhaps a maximum height for LATN exists based on the length of available nails, but that is a question best put to Kulesh or somebody with similar expertise.

You are already tall so perhaps you are Scandinavian or want to be an American movie star?  I was not tall to start so the length of available nails for me is not a problem.

[California2]

Hexapods Installed Today for Final Correction

Distraction= 8.3

Correction calculated for three days.

Then, long films to rule out leg length discrepancy.

Then, final distraction to 8.6 cm via hexapods.

Then, hexapod removal and locking of frames at 8.6 cm.

Then, LATN surgery on 20 Jan.

Less than two weeks from the finish line (excluding consolidation and recovery).

[California2]

Long Films

First scheme of correction via hexapods completed.  Second scheme consisting of only one day of corrections required for exact alignment.

Long films show leg length discrepancy of 2 mm.  Shorter leg will be distracted via hexapod to make up difference.

Final height gain will be 8.7 cm.

[cheekycabs]

A bit confused. What exactly is long films? Is that a type of x-ray? How exactly are they determining alignment and distraction?

I'm in a post-soviet facility now and they can barely read my distraction from an x-ray.

[California2]

As I have come to understand things, the size of an x-ray image is the size of the film canister.  Film is rarely used nowadays; the canister is digital--but it helps to think about the plastic x-rays that MDs used to put up on light boxes to understand the concept.

I incorrectly believed that to make a full length (long film) x-ray of legs, a film canister measuring about 3.5' x 2' was used.  However, I've come to understand that no such animal exists.  Absent very specialized equipment, the largest film canister is the size of the light box MDs used to use.

To obtain a full length x-ray of legs, three images are taken--top, middle and bottom.  Then, using very specialized software, these images are stitched together to form a single digital image. 

When trying to get long films done in the USA, I discovered that very few x-ray machines have the software that allows the stitching together of images.  Fortunately, the Vreden Institute has the technology to make long films.

Long films are used by Kulesh and Solomin primarily to assess leg length.  Alignment and distraction are easily assessed on short films.  However, short films are not enough because you can lengthen both legs equally but doing so does not ensure that your overall legs are the same length. 

By example, I learned that one of my legs is 1 mm longer than the other.  Consequently, I don't want exactly equal distraction because to do so would would perpetuate an overall leg length discrepancy--I want my shorter leg to be distracted the additional mm so that my overall leg length is equal.  Long films are used for this purpose.

Even older digital x-rays machines should have calibrated software that allows measurement of distraction.  Usually, it is as easy as placing the cursor to obtain measurements.  St. George Hospital got a new machine while I have been here.  I was one of the first persons to use it.  My short films said I increased distraction by over 2 cm in 10 days--we knew this was impossible so Kulesh took images of his radiographic rulers to help get the new machine properly calibrated.

Alignment is a similar process.  Kulesh uses the software to draw lines and take measurements, etc.  All of these calculations are backed up by physical measurements.  In fact, it was remarkable to watch 4 MDs perform physical measurements--two on each leg.  One would measure while the other recorded.  Then they switched--if they did not get exactly the same measurement, they would remeasure and dialog to sort out the difference.

Even if the machine you use does not have calibrated measuring software, a ruler can be added to your image so that distraction can be measured manually.  All of my recent images include rulers so that a manual double-check can be performed.

[California2]

Hexapods Removed

I have to admit that I have never imagined this much medical attention, expertise, or attention to detail.

Today I had five (5) MDs working on me. 

Dr. Kulesh was stationed at the foot of the table supervising everything.

Drs. Roma and Maxim worked on my left leg while Drs. Nikita and Nicholi worked on my right leg.

Each team was responsible to install hinged rods EXACTLY mimicking the hexapods so that the precise correction in place was not even slightly altered.

This means each team had to create a rod installation with absolutely no tension when tightened--everything had to line up exactly even when tightened down.  They went through each connection multiple times loosening the connection to confirm that it was still not binding despite tightening other connections.

The work, expertise, and attention to detail was amazing to watch. 

Part of what was amazing was how focused each team was on its own leg.  Each team collaborated together and with Kulesh--crawling under the table to visualize a screw-hole and confirm the screw-hole was 100% aligned was a common occurrence.

Today, I literally watched the difference between doing things and doings things absolutely right.  Craftsmen are not dead.

Before the hexapods were fully removed, x-rays were taken to confirm they got things right.

So, I am locked in at just shy of 9 cm.

LATN surgery is Sunday.

I knew the Solomin/Kulesh team was good, but today I was embarrassed because I saw just how good they are and fear I have not given them adequate deference and respect.

[Sanity]

any pictures /video?

[LLwarrior]

Is Dr kulesh doing surgery in the municipal hospital now ir It is now doing surgery in the prívate clinic?

[California2]

To Sanity:

Pictures or video of what?

To Heightchange:

As I understand things, for the time being, Solomin/Kulesh are limiting surgeries to MEDEM because they have more ability to direct the actions of MEDEM staff and the staff seem to be more able to deal with unexpected contingencies.

In explanation, when performing surgery at a municipal clinic, it is complicated to get the best anesthesiologist; then, after the procedure Solomin/Kulesh must rely on clinic staff to follow-up on the procedure but staff MDs and nurses could be called away for other matters.  Plus, if follow-up is less than desired, Solomin and Kulesh cannot really do anything about it--the staff works for the clinic; not Solomin and Kulesh.

So, to provide the best level of care, and a level of care acceptable to Solomin and Kulesh, they are currently doing elective leg lengthening surgery at MEDEM only.

This is an evolving situation and you should really dialog with Kulesh if you want surgery at a municipal clinic.

With that written, I had all of my surgeries at St. Elizabeth's and can attest that I received a better quality of care than at any USA hospital.

My final LATN surgery will be at MEDEM but because of this potentially temporary change in policy midstream, Kulesh will honor the municipal clinic price structure.

[Sanity]

"Pictures or video of what?"

of ur existance...

[LLwarrior]

So what Will be the cost now for Latn in MEDEM?

[California2]

LATN -- Nailing Surgery Completed

Everything went well.  Just got a bandage change and everything looks good.  Spinal was dc'd this morning so starting to feel things but not too bad at all. 

One or two days more at MEDEM and I am on my way home 3.5 inches taller. 

Still hard to believe.  Had to think twice when the nurse asked me my height.

[cool]

Congrats. Why didn't you do this sooner in life?

[California2]

I suppose I never really thought about it earlier in life.  Deciding to do leg lengthening was somewhat spur of the moment in that one day I just decided to look into leg lengthening.  Then, things just kept moving forward--I never hit a decisional roadblock and realized it could be done so I continued to press forward and now its done.

[cool]

Very interesting. You had a hip replacement right? Do you know how long they are going to last?

And please keep us updated on your recovery!

[myloginacc]

Thanks for sharing the pic.

Wishing you a great recovery and a great (taller) life.

How hard was your whole LL journey, in your opinion?

[California2]

The logistics of the process was not necessarily hard; there were simply many steps and many balls to keep in the air.  All doable and nothing particularly hard; just time consuming and requiring much attention to detail and visualization of the process so that I could accurately plan.

The process for me was painful.  The psychological impact of waking up with your legs in jail should not be underestimated.  I suffered near constant swelling and edema so have lived with pain at a 4-6 level for nearly five months.  Not unbearable but definitely not comfortable, interferes with sleep, etc.

Yet, now that I am done, I do not at all regret my decision.  I would not do it again but I am glad I did it.

I am also fortunate that my surgeries have been deemed "near perfect" and that my regenerate is good.   I know I just have to be careful, stay off my feet until I have 3 of 4 points of consolidation, work on strength and flexibility and I am confident I will have 100% success and be 3.5 inches taller for life (which is still something hard to get my mind around.)

[California2]

I received several PMs similar to the following so I will respond here rather than individually:

Every time I look at your swollen feet,  it reminds me of my own feet..
Hope your consolidation is going well

Counting days to get ride of this frame,  so I can get some sleep

One big problem I'm dealing with is my knee extension is very limited,  I mean I can't straight out my legs or even lay down,  top of my feet burns like hell. I do stretch everyday.  Any advice?

Some choose to go home during distraction.  In  my humble opinion, it is a mistake to do so because by doing so, you generally remove yourself from those professionals who can best address developments when they arise.

As for my swollen feet, 85% of the swelling is gone now.  My next x-rays are March 5.  I hope they will show that I am at least 75% consolidated so that I can begin weight-bearing.  I am confident that once I begin walking, the balance of my swelling will go away.

Already, my legs are feeling much stronger.  I am working out and riding the stationary bike every day.  I feel good.

The top of my feet also "burned".  For me, that sensation was caused by edema.  If you were under the care of your surgeon, you could request treatment or a consultation with a specialist that might help.

I could not completely extend my right leg without significant effort until recently.  For me, this occurred because my soft tissue did not stretch as quickly as I was distracting.  You must remember that your Achielle's tendon is connected to the base of your calf muscle; each side of the top of your calf muscle is connected to your two center hamstring muscles, which in turn are connected to the backside of your pelvis.

When you lengthen your leg bone, all of your soft tissue specifically including your leg muscles and tendons must also stretch.  When the muscles and tendons on the backside of your leg do not stretch as quickly as you distract; then, you usually feel it at your knee.  That is, you not be able to fully extend your knee.  This is normal and usually corrected by time, massage, and stretching -- but you have to massage the entire backside of your leg to help the entire band of muscle and tendon to stretch.

The more you distract, the "smaller" you become.  What do I mean?  The more you distract; the harder it becomes to distract.  Your body will push back against you harder and harder.  If you push things as far as I did; then, you will be close to bed-ridden by the time you stop distraction because of pain and because much of your body's energy will be trying to fix the problem you are making.  You won't have much energy left over.

Sleep will come when it comes.  I felt sleepy at midnight or 2 AM, tried to sleep but often could not sleep.  I just rested and watched the hours tick by.  Often, I would take my meds and eat breakfast at 6 AM with no sleep; then, sleep from about 7 AM to 1 PM.

I had to learn to do my work from bed with my computer propped on my stomach--rest, pick-up my project again--rest, take meds--rest, eat -- etc.

To be successful at this, in my opinion, it is essential to change your attitude.  Your "job" becomes leg lengthening--everything else is secondary.  Your situation changes on a daily basis. 

But if you listen to your body, accept that your life will be different during distraction, push things but also stop pushing when your body says so; then, one day you will realize you either hit your goal or your max and it is time to stop.

From that day, the process begins to work in the opposite direction.  You begin to get stronger, more flexible.  You experience less pain.  You sleep more.  You eat more.  Your wounds heal.  Your scabs fall away.  You begin to feel your feet and legs.  You feel more normal and you realize that you have accomplished a very challenging goal and will get to the end of the process.

It is not easy, I would not do it again, but for me it has been worth it.

[California2]

35 days after frame removal and LATN surgery.

[myloginacc]

Thanks for sharing another pic, California2.

Can I ask you at what distraction length did you first start feeling tight?

You mentioned this in the OP, but I'd really appreciate if you found the time to expand on it:

Distraction was easy through 3 CM.  At 5 cm, my ankles lost all flexibility and equinas began to be apparent.

This seems to go in line with what I've seen in the literature. 3cm tends to fall under 10% of the initial bone length distracted.

[California2]

For me, 10% would have been 3.7 cm.  I ended up doing about 24%.

If by "tight", you mean tight in the ankle joints or the beginnings of equinas or both, I was aware of and cautioned to train against equinas. 

Solomin & Kulesh take x-rays at every centimeter interval of lengthening.  They also perform an MD bandage change once per week.  For both tasks they take photos.  Each time they take photos, they instruct you to pull your foot up as much as possible so that they can assess and document dorsiflexion.

I recall hearing comments when distracting up to the 3 cm point like "foot position looks good--good dorsiflexion". 

After 3 cm but before 4 cm, I started getting comments like "can you pull your toes up any more?"

After 4 cm, I got a written warning that my "dorsiflexion is not excellent". 

At about 5 cm, I was advised to consider stopping distraction or doing ATL.  At this time, after stretching I could maintain neutral dorsiflexion (90 degrees).

I resisted ATL arguing that I had neutral dorsiflexion; therefore, I just needed to work hard and stretch 1 mm per day to keep pace with distraction.

After about another week, I accepted that stretching alone was not realistic--too much work and pain to keep at it for another month and, when I got honest with myself, I was not really keeping pace.

I also decided that I had not gone through this f***ing process for 2 f***ing inches.  So, I had a long talk with Dr. Kulesh about ATL and realized that most of what I thought I knew about ATL was inaccurate.  Additionally, my remaining valid concerns about possible rupture or over-lengthening/under-lengthening were addressed via Dr. Kulesh's new ATL protocol.

Once the 4th half-ring and hexapods were installed, I distracted and stretched my ATL at the same time.  I found that I could not BOTH stretch my ATL and distract at a rate of 1 MM per day so I reduced my distraction rate to .75 mm per day.

Thereafter, I continued at pretty much .75 mm per day up to essentially 9 mm but reducing the rate, taking days off, and once or twice increasing the rate, based upon what my body was telling me it would tolerate at that time.

Please let me know if the above does not fully answer your question.