Has anyone had ankle joint distraction surgery? Yes, it's the one with the halo outside your ankle that helps pull the joints apart. (It is similar to limb lengthening in theory, just opening up joints instead of elongating bones).
[QUOTE=kimberp;4091616]Has anyone had ankle joint distraction surgery? Yes, it's the one with the halo outside your ankle that helps pull the joints apart. (It is similar to limb lengthening in theory, just opening up joints instead of elongating bones).
Any input is appreciated [/QUOTE]
Have you found any good places where people talk about this surgery? I had the surgery last Wed and I have been in a significant amount of pain since. I can't seem to find any good forums where people share their experiences. Any info would help. Thank you, Connor Healy.
Unfortunately no, but I'm not surprised, it's not a very common procedure yet and few seem to qualify for it due to alignment and other issues. It is common for shattered/broken/lengthening of limbs, but not for arthritis.
I had mine put on in March and got it off in June. I was quite unhappy the entire time it was on, the first 2 weeks were the worst for me in terms of joint pain, the rest of the time I was just generally uncomfortable from skin pulling, etc.
There are just a few people, including Kris who may hop on here who had some other issues with it on, but try to stay strong. The first few weeks for me dragged and 12 weeks seemed like a lifetime then, but in retrospect it did go by fast.
Where did you have it done? And why did you need it?
I had severely fractured my talus bone 12 years ago in a motorcycle accident. They were going to fuse it, but instead screwed and pinned it all back together, as I under stand it it was almost a miracle they could do it. The surgery took 9 hours. So cut to 4 years ago one of the screws had worked its way out and snapped in half it broke right in my joint so it rolled around in there for the few days it took to get an OR ready at my local hospital where they extracted it. 8 months later suprize suprize, the rest of the screw came out, the part that is all threads, and wound up in my joint and took care of the reat of the cartilage that the first part missed. I asked if my doctor knew of anybody else that could do the procedure. He refered me to the Hospital for Special Surgery where I was lucky enough to get hooked up with Dr. John Kennedy. Over the past couple of years he tried a few procedures and ultimately decided that the distraction was the best thing to do. So last week Dr. Kennedy cleaned out the joint, removed bone spurs and extended the achiles tendon and Dr. Fragomen applied the frame. I feel very luck to have these two guys as I understand they are the best in their fields.
I sit here now in my basement apparently writing extremely long winded emails and trying to pay attention to movie after movie. The pain for me is certainly manageable at times, but is often too much to bear. I guess I have million questions for you, but I can think of 2 right now. I really appreciate you getting back to my first post, by the way. It is good to finally have someone to talk to who understands.
How is your pain now that you are out of the frame? Were you ever able to walk without crutches while you were in this contraption?
Thank you, very much!
Sorry to hear your story, unfortunately mine is long as well. BUT you and I are lucky that we have access to the best hospital and drs in the country for this - Dr Rozbruch and Dr O'Malley did my surgery and distraction at HSS.
The pain is pretty bad, actually worse when you get out if the frame and will be for about 6-8 months apparently, which they say is normal. I had/have a rather unique issue that is causing me more pain but am still waiting to see how it will be addressed, just had an MRI last week.
I was never able to put any weight on my foot while in the fixator which they said was fine, some people can and some can't. While I was home with it the days were ok/bearable, but around 4pm it would start to get to me and I would have to take something.
I guess your still doing your injections?(hated them and the pin care us fun, huh?
I am sure you have a million questions is you want to send me a private message on here please do.
With mine, they did not do the distraction when I was on the table as there was some concern about a specific nerve and stretching it out all at once was risky, so lucky me, I get to do the distraction. 1 milimeter a day for 7 days. They said it shouldn't hurt at all, by I tell a slightly different story . I had to stop for yesterday and today because my toes started to get numb (that's that nerve they were worried about) but it seemed to subside so it is back to it tomorrow. 2 more days then it all should be back to normal, whatever normal is. I knew this was going to be a long road, but man!
Oh here is one, did you have problems moving your toes, if so did they loosen up at all? How is your PT going do you see any progress?
Thanks again, really appreciate this.
I'm Kris, who Kim mentioned previously. I had the distraction done June 30th and had my frame removed Sept. 22nd. I was never able to walk without crutches with the fixator on. Not even close. I was told to try and put some weight on it, but the pain was horrific when I tried and I only could keep my foot down a minute or so at a time before it swelled up like a balloon.
I did have nerve issues from the fixator. I had burning in my heel from the moment they put the dang contraption on. I think I was only distracted to 4mm. I had problems with my toes cramping up when I had the fixator on. That feeling went away over time.
Kim is right that the pain will continue afterwards too. I went to my 7 week post up back in Nov. and my dr. told me that most people say they feel worse than before up until 8 mos post removal and then they start to turn a corner. I'm right now 11 weeks and a day post removal (not that I'm counting) and I am walking without crutches and a boot, but not fast, not pain-free, and not very pretty. I have hope that it will improve, but I have some nerve issues I need to work through that is slowing down my pt.
Hang in there. You will get more used to the fixator, although it will never feel great, the pain will decrease. I thought my 3 mos went by pretty fast.
thank you for the reply. Sounds as though you went through almost exactl what I am going through. They pain certainly seems to be mostly in my heel and my toes are cramping up as well. I am glad to hear that you are off f your crutches. My concern is getting off of these things asap. My poor wife has been truely amazing. She has a full time job we have 2 kids, 2 1/5 and 9 months, and then me. She does it all and watching her have to do it all by herself is killing me. I just have to get mobil asap. Who knows, I guess time will tell.
Last edited by Administrator; 04-12-2011 at 10:04 AM.
Although my dr. hasn't come right out and said it yet (I've seen him only once post-removal) he has hinted toward it and my PT has come out and said that I have RSD. He was going to call my dr. and try and get a script for a nerve block or blocks from a pain management dr. I go to PT today so maybe I'll hear something. I had the intense burning in the heel, like I said, the moment the nerve block wore off after the fixator was put on. I had intense cramping of my toes as well. My foot in numb on the bottom, yet it feels like I"m walking on broken glass. It is hard to explain and imagine how it can be numb (I can put it in striaght hot water from the tub and feel nothing) and yet the sheets on my bed rubbing against it can send me through the roof. Now, I didn't have this type of reaction until after the fixator was off. I had the burning and cramping, but the sensations didn't start until after the removal. I have all the other signs of RSD, the hot joint, hair growth on top of foot at first which has now stopped, shinier skin, different colored skin, nerve sensations, etc. My dr. put me on Lyrica but I had an allergic reaction to it which caused my throat to close up some and made it hard to breathe. They called in neurontin, but honestly, I'm scared to take it. It has the same side effects, but it needs to be taken more frequently to have the same effect as Lyrica. Lyrica was so awful that I don't want to experience anything like it again. And it didn't make the pain go away, just diminished it some. NOt worth not being able to breathe over.
Wow, such young kids! It is hard to sit back and watch everyone take care of you. I have 5 kids, but they are older 10-18 yrs old, and were able to help. My husband traveled out of town each week, so it was just me and the kids most of the time. They helped and I did what I could like make grocery lists, fold laundry, etc. I found it helped to get out of the house after the first month or so. I would go to the grocery. It would exhaust me, but it helped to make me feel more normal. I started to go stir crazy in the house all the time.
Hopefully you won't have the same nerve issues, but I would bring up any burning you feel. I brought up the cramping toes in the hospital and my dr. gave me a muscle relaxer and told me that it was normal for the toes to want to cramp. I told him about the burning in the heel and I don't remember his exact response, but I don't remember him being shocked by it. It could all be normal, who knows and maybe I would have developed RSD even without those symptoms. I did take one hard fall on it thanks to a wet floor at a gas station and things started to act up more then. That was about 10 days before I got the fixator removed. I don't know if that caused more pain or not.
Keep us updated. There are so very few people to talk to that have been through this. I'm the only one anywhere near me (SC) and my dr. was in Baltimore, so he isn't even close enough to see if there are problems.
Wow, that sounds pretty wild. I am curious to hear what the physical therapist says. I am not sure how to separate the different kind of pains that I feel. I understand what you mean about the numbness in hot water, but sheets driving you crazy. I don't feel that now, but I remember feeling that when I originally broke it. I opted out of the nerve block this time, I had it the last 2 surgeries at HSS and for months after I would get these shooting pains down the back of my leg from the knee down when I would sleep at night. I didn't like that at all so they gave me the clicker with the IV drip. That did what it was supposed to, for the most part.
I own an auto repair shop up here and it is not really big. Just me and my mechanic. I have to get back to work asap as it is only him there now and the place can get pretty nuts. I at least have to just be there to answer phones, deal with customers and write bills and all that jazz. This whole ordeal was painted a bit prettier by the doctors than I think it is going to be. It looks as though it is going to be a long year, for all of us, families included, here, long island and in South Carolina.
I can't say I can understand the nerve issue (knock on wood), I never had them with this surgery or the 2 before, however I can imagine how the metal through the foot for 3 months can cause havoc with everything.
When my fixator was on I could move my toes with the exception of my smallest toe which kind of got separated from the rest of my toes I think because the pin that was an inch or so down from it made it stick out a bit. Was an annoyance at first, but then I got used to it. My toes moreso during the first 4-6 weeks would want to curl down to the point where I had to concentrate on relaxing them and they would, but my husband would say he'd see them curl when I slept, but it did stop at about 6 weeks.
Sorry to hear your distraction didn't happen completely on the table. They distracted me to 5mm, then at my 2 week appt saw I went back to 4mm, so they moved me to 5mm again and then a few weeks later to 7mm. It didn't hurt at the time they made the adjustment but a few hours later it would be sore.
I'm afraid to tell you how I am progressing because I am still having some issues ... so by no means think this will happen to you .. but they want to put the ex fix back on me and fuse part of my ankle (sorry, I felt bad keeping this from you) ... BUT I am a unique case! (lucky me) .... please don't let this discourage you in anyway.
Oh man! That is terrible. I understand that everybody's experience will be different. Hey, at the end of the day we will all be walking better and without as much pain whatever I have to do to get there is worth it. I have spent the last year in particular in so much pain all of the time, I will go through just about anything to fix it. Of course that wont stop me from complaining about it the whole time though. Lol
I am sorry that you have to go back through it again, why do they have to do that. I guess the cartilage didn't take?
Hey guys, I'm new here, I spoke to Kris in another thread a few weeks ago and found this thread while doing some research. The quick version of my ankle- motorcycle accident June 18th, broke my ankle (and some other bones), I knocked two dime sized pieces of cartilage off of my tibia and talus and I'm practically bone on bone right now.
Hey Kris, I saw Myerson at Mercy today and I was given two surgical options, the dreaded fusion and distraction. And two non-surgical options, a brace to immobilize the ankle or some kind of injection. I'm not a candidate for the allograft because of damage to the tibia cartilage. I had a CAT scan done and have to go back next week to see what they will suggest I do.
I don't remember what the injection is called, but I think it is where they take bone marrow out of your hip, spin it down and get a high concentration of white blood cells which also will contain stem cells. They inject that into your ankle in hopes that it will stimulate new cartilage growth. That's a big "I think" on that one.
My advice, make fusion your last resort, distraction your second to last resort. Try everything else they can think of before you do either one.