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dbast 12-22-2011 11:14 AM

Here we go again...
I am now 2 years 4 months post op for right ankle oats. My outcome is not very good. I never got great range of motion back after the surgery despite the great efforts from me and my PT. At the two year mark, my OS says he sees two area of "concern" on the x-rays and wants an MRI. Tried that, but with all the hardware in there, the images were unreadable. So, the only option was to do a scope, which I had done 13 days ago, with hardware removal so we could MRI later if needed. Surgery went well, but the information found was not good. There was a lot more scar tissue to remove than he thought there would be and a lot of damaged cartilage that we were not prepared for at all. At my post op office visit he said that if he could do a total replacement he would but I am about 24 years too young for that. Apparently there is now damage to the cartilage on the end of my tibia and the joint is full of arthritis. The options he mentioned at this point are 1) ankle fusion 2) ankle distraction 3) total joint allograph replacement and of course there is always the option of Suck It Up. My head was, and still is, swimming. I was completely blindsinded in the office as I was in no way expecting this type of information. I couldn't think of anything to ask. I will see him again on 1/3. I am researching as much as I can and writing down questions for when I see him again. Any thoughts or suggestions?????

kimber687 12-22-2011 04:30 PM

Re: Here we go again.....

Sorry to hear about your appt, but hate to say same thing happened to me.

My OATS plugs incorporated, but after that surgery I lost all ROM and developed major arthritis in ankle joint as well as subtalar joint.

I did the ankle distraction twice in the last 2 years - total of 9 months in the frame and other than it helped me get my foot at least flat - it didn't help with the arthritis as I also just had my subtalar joint fused.

I am just 3 months out of the second frame but don't feel any better and in fact, second distraction caused some nerve issues, which I've had surgery on twice since May (second being 3 days ago).

Distraction is experimental and while I was willing to try it, based on my experiences and others of those who had it, I would go for another option. After doing distraction twice, I will be looking at complete fusion or replacement soon and I will go with replacement. At least when that runs its course you can at least fuse it then.

I am 44 and too young for this as well, but as you said, not many choices left.

Good luck, if you have my questions, I am here. :)

dbast 12-22-2011 10:21 PM

Re: Here we go again.....
I'm very sorry to hear all of this. I haven't been on here in a while, but last I heard you were going through I guess what was the first go round with the distraction. It just seems so bizarre that there is nothing out there to really fix the ankle. I'm 36, and to have my OS tell me that I am screwed was a real eye opener, to say the least. I was not prepared to hear any of this. It's probably irrelevant at this point, but I would like to know what caused this to happen in my ankle as there has never been any real trauma to it. I've never broken it or even sprained it to my knowledge.
Where did you have the distraction done? I have done a lot of reading on the Hospital for Special Surgeries in NY. Being in KY, I don't think there is anywhere here that does it. Not sure that this is what I would go for, but from all the reading I have done, it seems like that would be a better 1st choice as it doesn't hinder doing anything far as fusion/replacement. My allograft didn't completely incorporate, so that makes me a little weary of even considering the total joint allograft. Hopefully I am looking into things now that I can hold off doing for a long time, but I can't help but look and research everything. People around me that don't know what this feels like say "just don't worry about it now".....that's a little easier said than done. I am really hoping that the removal of scar tissue, hardware and damaged cartilage will help with the everyday pain for a while. I am having trouble right now getting my mentality right with starting to walk from this surgery. He said I could, but cautioned to take it very slowly and to use the dreaded boot. But I can't seem to do it. I still have 17 staples in, and I really think there is a mental block there because of them. I have tons of questions floating around in this head of mine, but I can't seem to put them together when I need to. One is, with the diagnosis of severe arthritis, would it help at all to start taking some form of arthritis meds....Tylenol Arthritis, Glucosamine, etc? I think my OS has done a pretty good job of explaining what's going on in there and listing options, but should I get a second opinion from another OS?

kimber687 12-24-2011 10:10 AM

Re: Here we go again.....
I had mine done at *** but if you don't want to travel up here Dr Campbell does do them in Baltimore as well and I know there are some others around the country as well.

Good luck with what you decide. Happy holidays!

fredda 12-24-2011 03:37 PM

Re: Here we go again.....
Dr. Ned Amendola at the Iowa university hospital also performs ankle distractions. He's paper about ankle distraction won the American Orthopaedic Foot and Ankle Society’s (AOFAS) 2010 Roger A. Mann Award.

K_Lana 12-24-2011 07:25 PM

Re: Here we go again.....
I remember you for when we were doing OATS.

Like Kim, I also had distraction last year with Dr. C in Baltimore. We knew before the year was over it did not go well. In fact, after the distraction I ended up with osteomyelitis from the fixator in my tibia as well as RSD which spread to my entire left leg after the osteomyelitis surgery. The fixator led to RSD which led to a spinal cord stimulator in my back, only to be removed 13 days later due to a MRSA infection. All that from the external fixator and disctraction.

On Dec. 6th I just had a STAR ankle replacement (43 yrs old) and a subtalar fusion. It was the hardest surgery I've ever been through, and I'm still in a cast, but it was my only option. My OS actually wanted to do an amputation, but with the RSD I worried about wearing a prosthesis.

Kim and I feel your pain! How old are you? There are dr.s who will do replacement on younger people. Have you gone to Duke?

dizzizzi99 12-24-2011 10:15 PM

Re: Here we go again.....
It really confuses me from a medical knowledge point why they put an "age" on ankle replacements. If the ankle is not useable at this point and it not possible to be out of pain and lead a "normal" life why would they put an age limit. So in 20 years when you are old enough your body is completly deterated from lack of use and your weight goes up. I realize that there is wearing out issues but if it lasts even 15 years then that is 15 years of life you can have, and the possibility of having better replacement technology in the next 15 years. It just makes me want to shake the doctor and ask how they would feel. What do they really think it is like to have to live with this pain and lack of mobility. Makes me crazy. I am so sorry to those of you who have continuing problems. Distraction sounds like it sucks and I think you all must be very strong to do it. Sorry for fussing but It just makes my blood boil.

dbast 12-26-2011 09:58 AM

Re: Here we go again.....
I think the issue is that a "good" candidate for ankle replacement is an older person with limited activity and even then they are only good for about 10 - 12 years. The more active you are, the quicker the replacement will wear out, giving you less than the 10 - 12. On top of that, I heard/read somewhere that you can only replace it twice. If that is true then, in the most optimal of situations, we are only looking at both replacements lasting 24 years (considerably less if you are younger and active). After that, we would be stuck. It is very frustrating and unfortunate that the ankle replacements just are nowhere near where we've come with the knees and hips. I'm hoping to hold off on any of my "options" for years, but I feel like I need to do all of the research I can in the mean time. At this point, I don't feel like we can/should totally rely on the Docs. I really feel like that is what got me in this position to begin with. Had I done the research with the continual pain after the first surgery in '03 (drilling/debridement) and pushed that OS to do something, would I still be in this spot right now?
I had lost 20 pounds before this surgery and have kept it off through the recovery (which I didn't think I could do), and I had planned another 20 but may push for more now. I found out through reading a bunch of stuff last week that every 5 pounds of weight lost relieves 10 - 15 pounds of pressure off of the ankle joint. The pain did seem to have gotten a little bit better just before going in for this surgery, so I am wondering if the first 20 pounds had anything to do with it. So, hopefully this will give me the added motivation I need. :) I am really hoping it will help. I am really hoping to find that miracle for something non surgical to help with this, or at least help make it more livable. The Doc told me in July that I was just going to have to accept that my ankle will never be normal. That is when I had my "shake the doctor" moment. I am not asking to be able to run a marathon, but I would like to be able to walk around for 3 hours at the fair with my kids without being in dire pain and icing,elevating and hobbling around for 2 days afterwards. We're not asking for the world or even "normal", just livable.

K_Lana 12-26-2011 10:13 AM

Re: Here we go again.....
My OS said that after the 2 replacements then they can fuse the ankle, so you wouldn't be stuck forever, but at least have a working ankle for 20-25 years now while you are younger. That is why I had the replacement. I know my activities will be limited to walking and bilking and swimming, but they were limited before! I couldn't walk before, so if I can get where I can shop at the grocery store, then it will be huge.
The STAR ankle I was told lasts about 15 years.

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