Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What would you do???

Hi gang, haven't posted in a while, you know me, a woman of few words
I'm going to reach out to my family here and ask for a little help. Many of you know the struggle I've gone through the last two and a half years with this knee replacement. For those newbies here that don't know the long story, please bare with me. Anyway, the continuing saga in a nut shell, the last surgery to replace the replacement didn't work. It's in worse shape than before this last of 5 surgeries which has left my surgeon and I at a complete loss as to the cause of this whole problem. I guess when 4 out of 5 surgeons tell you this surgery will fix it, don't always take their word for it. Boy this is getting long, sorry. Okay, so I was doing some research last week and was reading an article that jumped out at me an happen to look for the author. Turns out he is a well known surgeon who specializes in this problem. The thing is he is on the other side of the country. So here it is and I want to know what you would do, not what you think I should do (little twist to this). The reason for my asking you guys is because some of you have reached this point in your lives and understand. Here goes. You've lost your ability to do all the things in life you enjoy, including walking. You've done everything the top surgeons in your area have told you to do, nothing has worked. Your other knee also needs replaced, but, no surgeon will touch it because the other hasn't worked and they don't know why. AS'ers are known for their strength, endurance, and adaptability so many of you understand and are shaking your heads yes been there done that, but A. Do you continue to look for answers, get on a plane across the country to talk to another surgeon you don't know? or B. Do you stop looking for answers and accept and adapt the way we AS'ers do?
I hope this makes sence to some of you. Many of you have been a real inspiration to me and have helped keep my sanity, somewhat, during this 2 year nightmere and your opinions mean so much to me.
Thanks in advance for any ideas.
to all
Cindy

Hi Cindy,

I'm so sorry about your knee problems

I'm sort of in the same boat with my back.....not that the surgeon wants to operate on it again....he says the actual surgery has been a success. Trouble is, I'm still not really much/any better off, and that surgery brought on (or triggered off?) so many other problems I don't know what to do now either. I definitely don't want any more surgery - ever - if possible

I don't think surgery is good for us ASers, for the most part, tho if course it's always a last resort anyway. I know other ppl who've had successful hip/ knee replacements and/or back surgeries and they've all recovered fully and got on with their lives. BUT, none of them had an autoimmune problem....

I know this isn't really an answer to your question, just throwing a few ideas into the arena....sigh.....Wish I could help.

Hugs,
Sue

I would probably jump on the plane! Actually, I would get on the plane and go talk to this surgeon. I haven't had this issue, but when I was younger I had severe kidney problems and we went to every length and every specialist around to find an answer and fix it. I will say, my parents (I had it severely from 3-11) nor myself regret all the traveling we had to do to find the surgeon. If it was my knee and I was in your shoes, I would do it again. You may not get the answer you want, however, you will never know unless you go.
I would GO FOR IT!

Hi Cindy,
Well you asked what would I do, so I'm going to tell you what I would do. OK, lets take my hips for example. I got them replaced 6 weeks apart. On the second operation, when they attached my femur to the prosthesis, they did not align it up with the other leg. I didn't catch on to that until way after the pain went away, because I was sleeping with a foam brace to keep my legs spread apart. Anyways, my left leg pointed inward and my right leg pointed outward. I adapted to that, and trained my legs to walk together in sync. BUT, a cat scan showed a crack in my hip about 3mm wide that run from one screw to the other where they put the bearing in. I don't know if this happened during the operation or afterwards, but I realize I that need to protect this hip. It's a big deal but I didn't make a big deal out of it, because I didn't want to be taken apart and be put back together again, if it may not even work the second time. If that crack gets worse, I could need another operation, and if it gets too bad, it may not hold for the next replacement. If that were to happen, I don't think I could adapt to a hip replacement that could get worse after each replacement. So far my hips are doing fine, but I am prepared to go to all lengths to keep walking, as long as I still have my insurance. So my answer would be yes, I would see a doctor that I don't know, even if he's a few thousand miles away. Of course it would take major planning, and time off from what I do now (which isn't much), but I would definitely be calling the doctor up to see if I could talk to him in person or in writing to see he can fix the problem. Then I would send my medical reports and I would try to mail my xrays to him, so that he is well aware of my problem before I even get there. I would rather have him examine me by far than go all the way over there for nothing.

There you have it, a vote for yes. I only had each hip replaced once, but I have been thinking about this for a long time. For now I learned to adapt, (because my hips have been holding up), but I can't imagine myself learning to adapt to not ever walking again.

Now don't forget... this is not advice , it's only something I would plan to do.
Take care,
James.

Cindy

Is there any way that you could send copies of your x-rays to this new surgeon to view, then schedule a phone call with him? Maybe that way he could give you his feelings on if it would be a waste of time or not to fly cross country to see him.

If this was Eric, I would move heaven and earth to keep him walking.

Some of the old timers here may remember that I did nudge it when he was not able to walk, to get the meds he needed...If there is a chance for you to walk, then take that chance and do it!

Good luck, and please let us know how you make out.

Well I am a believer in everything happens for a reason. I think the article caught your eye because it was supposed to.

So I would say go for it. I personally do not think you have much of a choice.

Good luck,

Amy:)

Hi, Cindy:

TKR is tricky, and a friend recently needing one did the research and found a fellow at UC Davis who was able to provide a successful outcome on the first attempt--and he is an outspoken opponent of the way most procedures are done (I don't know the details). Personally, I believe that surgeons are at least 100 times better than rheumatologists, especially in regards to AS.

If you have an on-going problem getting a proper knee replacement done, you should not just let it go and accept the bad outcome, but fight for a proper ultimate useful joint; we have enough other things going on with AS that we don't need more to struggle with. Yes, you get on a plane and pursue the desired result, if that is what it takes. I don't know whether the problems you had were a complication of AS, but I know with my own recent surgery things could have gone much worse, had I not been in control of this disease. Post-surgery is a depressing period, no matter what the outcome was, so this is probably contributing to your frustrations, but think clearly about your decisions and discuss them with others who have known you over many years.

We who have AS do not adapt, and do not just accept our fates, but we fight until we KICK AS,

John

Hey Cindy,
I know where you are coming from. There have been many times when I just wanted to throw in the towel and let this stuff run its coourse and get it over with. But that isn't what we are made of. I have to go with at least making contact with this surgeon and hearing his side. Who knows he may have an associate on this side of the country. But if it means taking a trip to the other side of the world then go there. There is no question in my mind that as a ASer you have to Kick It.

Keep Kicking AS
Chris

Hi Cindy, I'm with the others. Get in touch with this guy. A consult couldn't hurt, could it? Especially since this is his specialty. As Amy said, you happened to pick up a magazine with an article by a top expert in tricky TKR surgery. As I said to Loz yesterday, I believe everything happens for a reason. I will add, I do not believe in coincidence. You saw that piece of info out of nowhere for a reason.

Sassy is being quite cautious and, I think, wise in her approach. At least give the guy a call. Talk to him. Email your xrays over. If you click with the guy, [**BLEEP**] the torpedoes and full speed ahead!

Cindy, I truly hope this guy can help you. After all you've been through over the past couple of years, you deserve a break.

Many hugs,

"We who have AS do not adapt, and do not just accept our fates, but we fight until we KICK AS"

And this, John, is one of the reasons I so very much appreciate you.

Many hugs,