I know this is a pediatric surgery forum, however, because spina bifida is treated so aggressively with kids, I felt that maybe someone might be able to point me in the right direction for treatment as an adult. I am a 45 year old adult female with spina bifida. I am facing total knee replacement in the future. I have SB at L5/S1 so I am highly functional and can walk with an AFO on each leg (legs & feet are non-functional below knee) . Preservation of my Mobility is really important to me as I used to ride my mountain bike a lot before this. I have a completely chronic torn ACL, completely effaced & torn medial meniscus, and O/A in my right knee. My tibia is very unstable. 100ccs of fluid just removed and cortisone injected. Before that, pain was a 5 on scale of 1-10, now it is 0-1. I take 2000mg of D3 daily and my bone scan showed me in the middle of normal. Prescribed a KAFO which is being made. WOndering if you can refer me to an ADULT ortho surgeon (or a ped surgeon who operates on adults as well) who has experience with this type of situation if knee replacement is required, so that if and when a TKR is necessary, I have an expert to go to. Thank you.
The decision of TKR has to be taken by an expert by looking into conditions like : Complete ligament tears, severe arthritis, avascular necrosis etc. You can go into any good facility and to an Orthopaedic surgeon who has conducted knee repalcements before and discuss your case.
Before selecting :
1) You have to be ready for Physiotherapy which would be intense for 3 moinths and mild after that
2) The orthopaedic surgeon who has done maximum successful cases in your area is the one who should be selected
I have been to numerous docs - all specialists in TKR (as well as hip) and all but one has gone straight to TKR without trying any other treatments. The fifth doc drained the fluid and injected the cortisone and prescribed the KAFO. If those don't work, then he said surgery will be discussed as an absolute last option. My concern is, I have had lower limb paralysis most of my life secondary to SB, thus the AFO on each leg. This is a typical scenario for someone with SB. I'm trying to find a surgeon who has successfully done a TKR on a leg with lower paralysis such as in someone afflicted with a neuromuscular disease like SB. Each doc I spoke with had a different approach. Some said "off the shelf" would do since they have such a wide range of sizes, others said possibly a custom knee replacement would be needed, and then another said knee fusion or a replacement that would require drilling 5 inches into the tib and fem to install the hardware. Haven't found anyone who has done TKR on a leg with lower limb paralysis using an AFO. That's the kind of surgeon I'm trying to find.
We cannot suggest you any names here but you can try near any medical schools specialised in orthopaedics who might have handled this type of case with a Spina Bifida problem.
The most important thing for you thou is Physiotherapy. What amount of exercises you can do for full recovery is what you should discuss with the surgeon. Surgery can be conducted by any good Orthopaedician, recuperating after that by you is the important thing. Do not go ahead till you are clear with recuperating after the surgery. Take care!
I know you are looking for answers but would be very interested in any answers you do find. I'm kinda in a similar situation...L4/L5 with AFO's on both legs...I ride both road and mtb and recently had arthroscopic surgery for a tear in my MCL in May. It's been almost 2 months and have not gotten the best of news. I NEED to be active, especially the ability to ride. I am about to get fitted for a knee brace but there really isn't a long term solution, which is why I am interested in what you hear. Sorry for jumping on your post but I'm glad I found it.
Hi, no problem that you jumped in...I'm glad to know I'm not the only person in the world with SB who needs/has had surgery on their knee! Mobility is really important for me too, and so I've told each doctor that there are no exceptions for me after surgery...get me on my feet and into PT so I can recover and get back on my bike. So, if you wear AFOs on both legs, I assume you have below the knee paralysis, too, right? I have a comlpletely torn ACL and a completely "effaced" (flat?) medial meniscus which is torn (I have read that those two injuries often happen together). I REEEEEAAAAAALLLLLYYYYY want someone to repair the tears or put in cadaver ACL & Meniscus, not put in hardware. I just have it in my head that the surgeon who operates on me needs to have insight into the difference between the force on a knee with below the knee paralysis versus the force on the knee when everything below the knee is functional, and how that will reflect on the success of the surgery. Maybe there's no difference since the AFO takes the place of those key functions. I just want someone to tell me that, so I can either approach this with lots of research behind me, or expect that I am subject to the same solutions as a girl that has function below the knee. I want a surgeon who is experienced in wierd variations in knee replacements like that. When your surgeon repaired your knee, was that issue brought up? What kind of logic was used that specifically addressed your SB paralysis as related to the knee problems? Heck, if your surgeon has the experience, DC is not too far for me to go to get my knee fixed! Only 4-5 hours. PS, what is your age? I'm 45, and I'm sure that is something docs are taking into consideration when examing me and considering my treatment. My email address is ***@****. Please feel free to communicate with me directly there, since I think post length is limited in here.
It looks like when I posted my last post, it blocked our my email address. I'm going to try typing it another way. L a w n u t at O p t o n l i n e ******* (there are no spaces in between the letters in the actual address.
Hi. Did you ever find an answer? I'm 49 and having the same problem. I had a TKR, but then had to have a revision. Something happened today, and now I can't walk on it. I'd love to hear if you've found anyone experienced.
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