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

Hi Cindy,
You really need to go and find out what this doc can do for you. The sooner the better right...you need some relief and good news about your knees instead of what you have gone through up until now. I know it's hard sometimes to press on and "start over" but you need to get your life back and enjoy.
I told you what I have been going through with my knees which is no where even close to the problems you have had but I can relate in a way. I really injured my sore knees a week and a half ago and have been to several docs who have done nothing for me. I went to a different hospital lastnight and they say I am definately injured (I think I knew that) but I now have a full leg brace and splint on my left leg. The swelling and pain is still too bad for them to figure out what I have done to my knee but I guess I will need an MRI to figure that out. My knees have been sore for years and getting worse all the time...very painful to bend slightly.
So ...if it was me I would definately travel the world to find someone to fix them. We need to be able to walk.
Take care and best wishes to you Cindy

Sherri

What we do is we call Bozo's #3's office and interview their staff extensively, we do, before we get on de plane.
First we find out if Bozo #3 is taking new patients. Then mention where you live.
2nd, we find out if Bozo #3 takes your insurance or part of your insurance, or wants cash, to evaluate you. Then find out how much it's going to cost for this evaluation.
Then, if they seem "with it", (they always do at this phase....) you find out everything you can about this person, his status as a Dr in his state, history, how long he's done this, how many of these things he does per year, the percentage of complications, the percentage of successful outcomes, esp. as regarding "do overs" as you've been done over so often. Then you get references from patients he's successfully operated on.

Then, and only then, if he passes the investigational phase, you get on de plane.

Many, many years ago,before meeting the neuro surgeon who refused to "fix" me because it would screw me up further, but encouraged me to go back to the GP who had finally sent me to the PT who got me moving again, I had talked to several people who insisted I should see this particular neuro, 3 of whom he had actually operated on with good outcomes and all whom thought he was good. So when he said surgery not a good option in this case, and explained why, I was much more confident. He also said that someday in the future it would be a better idea, but to wait. I also knew if I held out long enough eventually we would get to where the technology would overlap the problem with fusing a joint to stablelize it. Nowadays, you just have to weigh in the risk of killer oportunistic infections, drug allergies, uncoordinated care, and incompetant outcomes.

I am all for keeping up the good fight and finding an answer. So I hope you find some solutions to the knee issues, realize it must be frustrating. Many of us have been there at one point and at varying degrees when someone told us this is the way it would be.

Tim

Cindy;
Do it. Don't ever give up, "stop looking for answers." I recently fired my pain-management counselor because she's a defeatist. She told me things like "Well you're just going to have to look for a career that DOESN'T involve the use of your hands". Flip that. Don't ever give up!!! Go to the doctor, MOVE across the country if you have to to be close enough to get the surgery. Don't ever let go of the control over your own life. Some uber-religious folks I know have done that, and it's just so sad to watch their bodies break down because they won't go to the doctor - "It's all in God's hands." Well, I agree that we ARE all in God's hands, but - God helps those who help themselves, right? God (if you're not religious, you can substitute "fate" or "the universe" here) doesn't want us to be sniveling lumps of carbon. Do what you can to take care of yourself!


-Bridget

PS Oh, I forgot to say that if it were MY knees, I'd do it. Didn't want to leave that out!

To all of you, thankyou for taking the time to give me input. This group is really the only people who truely understand and I trust your opinions and know that they are thouroghly thought out. That's why I came here to talk it out.
this kickas family is
Cindy

Wow, send the xrays, mri's and anything else to the new surgeon and then get an opinion...but I would be ready to jump on the plane if your and surgeon's opinions meshed...

If you can keep walking, do whatever it takes, but know that you can travel in many ways today...

Peace, keep us posted, you rock, hang in there!!
Linc

Bridget, you are so right, God does help those who help themselves. And yes, that is what I wanted to know, what you would do.
Thanks so much
Cindy

Yep Tim, that's why I came here to discuss this. A lot of AS'ers have faced a similar situation and no one else could possibally relate.
Thanks
Cindy

I'm really starting to get my fight back. I've done my homework on this surgeon now all I have to do is follow through.
Cindy

You know, that's why I brought this here. There is so many who can relate and give "real" input. By the way, I've already done the homework on this guy. I've gotten so good at it after traveling to see 5 surgeons last year before I had the replacement replaced in August. So I've got all my ducks in a row just need to make the decision. First I better bring it up to my husband and see if I get the support from this end.
Thanks
Cindy