Quote from: Rocky on March 29, 2021, 10:15:23 PMI 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?
My LL Journey - Dr. Jamal Abu Nemer, Kiev
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.
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
Hello Sibirskiy.
Thank you dear for your sincere wishes.
I wish you all the luck and God bless you and your family.
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.
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.
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?
Dear Tartar,
That's absolutely true. Big vessels are also something that can't be neglected. Also the nerves and soft tissues, etc. I have been talking with both, LL surgeons and regular orthopedic doctors. You get a different opinion from every doctor and it is very confusing.
I wonder if this RIA method is worth it, because you will end up doing one surgery and you will not suffer from the shortening treatment. Different doctors have different opinions about the RIA method as well, so it is hard to judge whether it is worth trying or not in the future.
Dear Rocky
Sincerely sorry to hear of your experience. I hope you are well on the road to recovery. Rest assured, you will walk and even run again.
I had my surgeries with Dr Dragan (RIP) and Dr Jamal in 2004 and can attest to a good result. Dr Dragan died of a heart attack as far as I know.
I don't know how it is done today but in my time and fortunately for me, it was quite organised and run smoothly. Dr Jamal, bless him, visited me almost daily to do my clicking, which I wasn't able to do unassisted. I've always had a good experience with Dr Jamal. I have no business affiliation with him and he is someone I would consider a friend, being of roughly similar age.
No two patients will have the same experience and no doctor will have a perfect record. I think all should bear in mind there is no surgery without risk and this being one of the, if not the most extreme type of surgery out there, one should always tread with caution and think long and hard before committing to anything, as well as weigh the risks vs the rewards carefully.
If there is anything I can do for you, let me know.
Dear Rocky
Seriously not posting the above vids to rub it in your face or anything like that, I am once again very saddened to learn of your experience and I sincerely hope to see you walking unaided in the very near future but the idea here and since I removed all my photos and videos from my own post some time back, not wanting to lurk around forums - most LL patients prefer to move on with their lives and I am sure you are eager to put this whole chapter of your life behind you too - but the idea as I was saying is to motivate you, because let me assure you pal, if I can do it, so can you!!! Eat well, rest well, put weight on the leg needing healing and you'll be there in no time. Best wishes.
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