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[Rocky]

I was naïve and believed in this nail system.

My best advice... Stick to standard nails in the market, such as PRECICE, Stryde, FitBone, etc.

And most importantly, stick to an experienced doctor with a known track record, solid history and good reputation... Otherwise and I repeat it again

STAY AWAY

You will not realize what blessing those 2 legs are until you end in a wheelchair...

[RB]

I was naïve and believed in this nail system.

My best advice... Stick to standard nails in the market, such as PRECICE, Stryde, FitBone, etc.

And most importantly, stick to an experienced doctor with a known track record, solid history and good reputation... Otherwise and I repeat it again

STAY AWAY

You will not realize what blessing those 2 legs are until you end in a wheelchair...

Sorry to hear about your recovery mate.

What do you think were the main issues with the particular nails you had? It seemed you were doing well until the end of distraction and then things went downhill.

Hopefully you are able to fully recover now that you are away from that place.

[Rocky]

Thank you dear Serilium.

I appreciate you wishes.

[KiloKAHN]

I figured the bliskunov nails had a pretty good weight tolerance and that weight-bearing while lengthening was supposed to be one of its advertised features. It seems to be that for whatever reason, bone growth has been an issue with patients of Dr Jamal. Would you say your experience is more due to the doctor or due to the nail, in your opinion?

I hope you're on your way to recovery soon.

Update for the last 3 years:

I ended with the following:

- I have been using wheelchair for 3 years now
- It turned out that my legs were not even in length
- Non-union. The rods couldn't take my weight and broke
- 12 failed devices replacement surgeries (and still uneven legs lengths). Combination of devices and surgery mistakes.
- Bones infection and risk for legs amputation if I waited a bit longer

I had to be treated at another place and did the following:

- 2 surgeries to replace the limb lengthening rods with normal rods & twist and stabilize the legs
- Adjust the lengthening so both legs are even now
- Bones infection treatment took 3 weeks. It was a nightmare
- Non-union is still there. I still need to find a solution to treat the non-union
- I am doing physio to rehabilitate my legs, but the path seems far away
- Right now I am still using a wheelchair

My advice:

- Stick to a reputative doctor like Paley or someone is his caliber otherwise...

STAY AWAY

[Medium Drink Of Water]

I am also very interested in knowing what exactly went wrong.  When I was considering femurs he was one of the doctors I might've gone to.

[Rocky]

Dears,

I will try to answer your questions the best I can.

He manufactures his nails at a car spare parts factory and he pays the engineer there pennies to do so. Very poor materials quality. He has also been manufacturing his devices at cheap factories in Bangladesh and Pakistan but he stopped doing so, because the devices kept failing. I discovered that very late.

He never uses a monitor during the surgery, so he has in several occasions drilled screws in the wrong places. We have discovered a single time, where he drilled the lower screw few mm below the nail. So basically the nail was loose at one end. We discovered that during the X-Ray couple of weeks after the surgery. He didn't want to admit it to begin with and talked around the topic. We had to do another surgery to put the screw in its place, so it could hold the loose end of the nail.

He was panicking because he kept repeating the surgeries and replacing the nails multiple times. We ended up with more mistakes. He ended up losing focus and doing more mistakes. At one point he had tighten one of the screws too much. He told me that if the bones consolidate, he will have hard time removing it. So we had to do another surgery, so he could loosen the screw... I can keep going on...

Be also aware, that he utilizes his 2 students daughters to operate during the surgeries. One of his daughters is underaged. I discovered this accidentally by one of the nurses too.

He uses Lidocaine (local anesthesia) during his surgeries, because doctors get it either for free or for a small fee when they rent the surgery rooms in Ukraine.

When you sleep during the surgery, you will experience that you will wake up multiple times. If they are slow to give you the injection, you will start screaming of pain. I have confronted him with that but I was unsure if I was dreaming or if it was real. He kept saying that it was illusions, until one of the nurses told me the truth.

To make matters even worse. It turned out that he has no clinic and he is not a certified doctor in Ukraine. He bought his diploma in 2011.

If you ever get the chance to visit Ukraine, try to chase his 'clinic' address. It doesn't exist. There is no clinic!

Medical centre BONAMED
Chervonozorianyi prospect, 17, Kiev, Ukraine


http://www.correction.kiev.ua/index.htm

He has hired some Russian dude to answer any email request going to the official email: onex@ukrpack.net

Because he simply can't read or write properly in English, Russian and doesn't know Ukrainian at all. He can't even write any medical report by himself. I wonder how he graduated from University.

If you can speak Russian or Ukrainian, try to have a normal and simple conversation with him over the phone and you will discover wonders by yourself.

Check his University Diploma and judge for yourself (It says Doctor of Philosophy)…

http://www.correction.kiev.ua/bonamed/phd-cert.jpg

I promised my wife to move on and not talk about this topic, but I couldn't help myself when I logged in and I saw your questions...

[readyprecisestryde]

I can't believe he is allowed to do surgeries and hope you recover soon

[Rocky]

I learned that he crippled several patients. He went through multiple interrogations with the police and the Ministry of Health has been alarmed. He is facing a serious court case this year.

[Rocky]

My next step is to even my legs as they don't have the same lengths anymore. Then I need to figure out, how to get rid of the wheelchair.

Thank you all for the nice wishes.
I really appreciate your support.

God bless you and take care of yourselves.

[BelowTheMean]

Wow, best of luck with your recovery Rocky. It's sad to hear about a doctor (if you can even call him that) who is doing such terrible things to people to make a bit of money. I hope the authorities are able to stop him and he gets some kind of punishment for his actions.

To anyone else trying to save money on CLL surgery, please be careful! This forum has proven again and again that there are definitely bad actors out there.

[RealLostSoul]

This is a story for a horror movie. I am so sorry for you and wish you recover well.

I have a question, since you appeared happy, excited and satisfied during the process, when was the time where serious problems occured (after distraction phase)?

[Rocky]

Dear RealLostSoul,

Thank you. I will try to answer your query the best I can.

The issues started to appear when the device broke inside my femur, after getting back home. The pain was unbearable. Thus, a replacement of the nail was a must. Then we discovered that my left and right legs were not even equal in lengths (And they still aren't until this day). Even the longer leg was not the expected length that we agreed about back then.

Later on, we discovered that the screws were not mounted correctly... The nightmare journey started from there. The more surgeries we did, the more mistakes we experienced. Not to mentioned the cheap materials that were being used and lack of hygiene.

I am under financial pressure right now and can't afford expensive surgeries anymore, but I have to find a way to even my legs in the future. Then I need to fill the non-union somehow. My ultimate goal is to be able to stand on a walker again. Once I am able to use the walker, I will hopefully graduate to crutches by time.

Being on wheelchair kills me slowly as a human being. 

[Rocky]

Dear BelowTheMean,

Thank you very much. I really appreciate it.

[las vegas baby]

Hi rocky sorry to hear this news. hope you get better soon. I did some research on your doctor abu nemr jamal and he seemed to have some positive testimonials from dragan who is well respected (i think). he seems to be a legit qualified doctor but if you say his documents are fake then its horrible

can you say some words about taller_in_kiev who used to say good things about abu? Did he work for the doctor? he made some posts on this thread and also on other threads and said he had 100% recovery and spoke in perfect english.

he also said you were doing very well and recovering.

[Rocky]

Dear Las Vegas Baby,

Dr. Dragan is not alive. He died under unknown circumstances.

Regarding Taller_in_Kiev... Jamaal presented him to me. He seemed like a good person and he was giving me good advices on how to workout my legs. I've met him twice and I have nothing bad to say about him.

Regarding his business with Jamaal. I prefer to step out of this discussion. Please ask him directly.

[Medium Drink Of Water]

Dr. Dragan was indeed respected when he was alive.  My doctor had two great understudies while I was there.  I assumed Dr. Jamal, as Dr. Dragan's understudy, picked up the torch and continued offering services at his level. I guess assumptions like that are dangerous.

Thank you so much for coming forward and sharing this information with the forum.

[Rocky]

I don't know Dr. Dragan and I have never met him, so I can't comment this.

I know that he died years back. This is all what I know.

Regarding Jamaal's level. I will leave this to be answered by the Ukrainian law & court in the future.

You are most welcome dear.

[Highest]

Hi Rocky,

Thank you for sharing your story.
So you have uneven limb length with non union and are in a wheelchair? What is your first step in fixing these issues? Are you able to work from home? Does your home country have a public health system that could help you at all? Doctors that can leave their patients this way deserve to lose their medical licence.
You are doing a real public service sharing this information. Please keep people updated we are wishing you a full recovery.

[Rocky]

Hello Highest,

Thank you dear.

I have to either shorten one leg or lengthen the other leg to make them equal. That is technically possible with a limb lengthening device. My main concern is the non-union.

I have been researching allografting vs autografting and I have heard different doctor's opinions. But I am not sure who is right and who is wrong anymore. Besides it is financially costly for me. Not to neglect the physiotherapy part, because I have lost a huge part of my muscles mass. I can't afford any treatment at the moment. I'm under financial pressure.

I am dreaming about being able to support myself with a walker. I miss the feeling of being able to stand up. But that is not something that is going to happen in the near future. I have to be realistic with myself.

[Rocky]

Out of curiosity dears,

What is the best treatment for non-union?

Allografting, autografting or something totally else?

Please share your experience.
 

[fivetenneeded2016]

Out of curiosity dears,

What is the best treatment for non-union?

Allografting, autografting or something totally else?

Please share your experience.

just a vague idea..
its compression+ bone graft..thats what mahbobian does here:

https://www.instagram.com/tv/B8PPa08HNQw/?igshid=1lu5trmexkfa0


btw i thought your nail could compress too, right? i remember you mentioned it in your initial posts.

[Rocky]

Dear fivetenneeded2016,

Interesting and thanks for sharing.

The nail mechanism has failed (again), so it is was not working anymore. The nail couldn't lengthen or shorten anymore. It was standing still.

I am using a normal rod now. I need a replacement with a standard and reliable limb lengthening nail from the market. And most importantly I have to be treated by a reliable doctor that doesn't experiment with his patients. I would believe that standard nails such as Precice or Stryde would do the job pretty well. But I can't afford such a nail at the moment.

[Rocky]

Dears,

I have been looking at this method:

https://www.youtube.com/watch?v=6jRELWYF8l4&t=214s

Anyone has done this before and does it work?

Any experience with this RIA treatment?

[Rocky]

I have also found this article that describes this method:

https://pubmed.ncbi.nlm.nih.gov/21487820/

Any experience with this bone grafting & RIA treatment?

[m7liam]

I have also found this article that describes this method:

https://pubmed.ncbi.nlm.nih.gov/21487820/

Any experience with this bone grafting & RIA treatment?

Hi Rocky sorry to hear about your experience.

Just wondering, since your goal is to get back to walking, why don't you just get the doctor to reset the nail but without the lengthening part? E.g., remove the nails on one side, push the leg together, and then renail it when the bones are closer. Given there is non-union, it should be easy to bring the two parts of the bone together and you wouldn't need a lengthening device (I would have thought). You would lose the lengthening part but at least your bones would be next to each other which would help with healing (again, just a thought that you have test with the doctor).

What is preventing you from walking? Is it because the nail you have right now is non-weight bearing?

[Rocky]

Dear m7liam,

This is one of the options that I also thought about.

Right now I have just normal rods holding my legs, so my legs don't collapse. Jamaal's nails kept failing and he did repetitive surgeries and many mistakes mounting the nails, so I literally escaped to another hospital to replace the limb lengthening nail with normal rods. His lack of hygiene caused me bones infection. I had to go through a 3 weeks treatment and tons of injections (nightmare) to get rid of the infections, and 2 surgeries to replace his nails with normal rods.

Anyhow, back to the leg resetting... Resetting the legs back to their original size can't be done overnight. In other words, you can't just collapse the legs suddenly to their original size as far I was explained by one of the doctors, because your muscles, tissues etc. have been extended. They have to gradually get used to be shortened again while you are pushing the bones backwards. But it is technically possible as I was told, and it is a painful treatment.

I would guess it is like lengthening, but you go the opposite direction. But I am not a doctor. I am just sharing what I have been told.

The shortening treatment needs a careful treatment and monitoring by a doctor. In my case, I will need a surgery to remove the normal rods and insert limb lengthening nails that are designed to shorten (go backward and not forward)…. Once you shorten over a period of time and the bones edges are close to each others, you will need a surgery to cut the edges from each side (ca. 0.5-1 cm from each end) and the doctor needs to refresh the bones from each edge.... You will in this case lose about 1-2 cm from your height.

To conclude the topic, yes it is technically doable to shorten yourself back. You have to accept that it will take time, it is painful and you have to accept being 1-2 cm shorter in height.

If you have money enough, you could then lengthen again and start all over. As you can probably imagine, it is not a cheap journey. So you have to be prepared financially.

It is an option that I have differently evaluated. The problem is, that I couldn't keep my job due to my disability and therefor I can't financially afford any treatment at the moment.

[Sibirskiy]

Thank you Rocky for sharing your experience and getting back to us on your predicament even after all these years. I have no questions, I only sincerely wish you the best of health and hoping thay you may recover soon

[Rocky]

Hello Sibirskiy.

Thank you dear for your sincere wishes.
I wish you all the luck and God bless you and your family.

[m7liam]

Thanks Rocky.

I’m not sure I understand from your explanation why your legs can’t suddenly shorten.

I guess you’ve only spoken to one doctor? It is worth speaking to Paley or Giotikas to see if that is true? Sometimes I find different doctors say different things.

Because if it wasn’t, and your legs could shorten instantly, you wouldn’t need to go through cost and time to shorten.

Food for thought.

[Rocky]

Hello m7liam,

You are welcome dear and I appreciate your thoughts around the topic.

I have spoken with several doctors the last 3 years and they basically explained the shortening treatment with the same conclusions. I am not a doctor, so I am just sharing what I have learned from my discussions with those orthopedic specialists.

As much I wish it could be that simple, but it seems that it is not that straight forward. In my humble understanding, you can't just collapse your legs 5 or 7 cm overnight. You could easily damage your legs and nerves, etc. You have to do it gradually so the body can get used to it, such as the surrounding muscles, tendons, soft tissues, nerves, etc. Because bare in mind that the lengthened muscle, tendons, soft tissue, nerves, etc. got used to that the 5 or 7 cm are your actual length in that particular leg area. Your brain would also adapt to it as well. 

You will be surprised how many body parts will be involved during the lengthening... and I guess it applies for shortening as well. But again, I am not a doctor nor an expert.

There is also a method called bone transport, where the surgeons cuts the femur that is close to the knee and push it slowly upward to fill the non-union gap while the lower bone edges create enough callus to generate a new bone from one end, while closing the gap from the other end. But that is a lengthy, painful and expensive treatment too. It needs an experienced doctor to do it.

Alternatively there is the RIA technique. I have posted a YouTube video about it the other day. Some doctors endorse it, while others say that it is not a guaranteed method. Especially if the non-union is very large.


https://www.youtube.com/watch?v=6jRELWYF8l4&t=214s


Paley is defiantly the go-to-doctor in the limb lengthening arena and you will probably minimize your failure risk significantly, but you need to be prepared financially. On the other hand, you get what you pay for.

After my limb lengthening experience, I came to the conclusion that it is always wise to engage with a doctor who has done those kind of surgeries thousands of times and has a good reputation... and wants to maintain his reputation through successful treatments and satisfied 'customers' (patients). Paley and his team have probably done more than 1000+ surgeries, if not more, since they started this business few decades ago. They know their stuff very well.

[Tartar]

Hi Rocky
I’ve never heard about a gradual leg shortening. I know for sure many doctors do shortening surgery at least in a safe range of 5cm/surgery. The main problem in my opinion is related to big vessels, since there’s not a stretch but an excessive collapse could lead to obstructions. Have you spoken to LL surgeons or “normal” ortopedics?