RA and Multiple Surgeries | Arthritis Information
Just wondering if there are any other people on this forum who have had long-standing RA and lots of joint surgeries? Have they improved your lives on a long-term basis? Any particular surgery you would never do again?
I've had RA for 18 years now and I'm coming up to surgery #30 - MCP replacement on my left hand. I have very little function left in my left hand, so it doesn't seem to be much of a choice. But, at this point I've also endured surgeries which have left me off worse than pre-op because of complications or surgical errors. I've learned that just because a surgeon is "nice", doesn't mean he's "good". Mostly, I'm just frustrated with this disease and it's never-ending complications. I'm 48.I cannot help you with you questions but just letting you know that the call has been read.
Hope that others can help you.
I've had RA for over 25 years and have had 11 joint surgeries and am looking at more in the near future. Ive done very well with all of my joint replacements (knees, shoulders, elbows, wrist. I have always chosen my surgeons very carefully for their skill which as you have discovered is more important than personality. I also am in fairly good general health. Additionally, as my favorite surgeon once told me...I have good bone stock....I owe that to never being on prednisone.
I can honestly say without my joint replacements I would be wheelchair bound and totally dependent on someone else for self care....if I wasn't dead.
Thanks for your replies,Bodak and Buckeye. Prednisone must be my downfall. I haven't been off of it in 18 years (I'm trying to get off but I think my adrenals are shot so it's a slow process.) That, and a major surgical error during an ankle surgery that left me with severe neuropathy in that foot and unable to walk for the next 18 months.
Buckeye, do you take biologics or a different DMARD to control your RA? How have you managed to avoid Prednisone all those years?I've run through all the biologics....or just about anyway...right now I'm just on arava and mtx....and I'll stick with that combo as long as I can
Pred is the one drug that has always made me nervous. With the other drug you MAY suffer side effects with pred you WILL have side effects.
Good point.I'm living proof of that with early-onset glaucoma and 2 'fragility" fractures within the last 6 months. I'll keep working hard to get off the Prednisone!Pred is such a hard drug. I managed to stay off it until I developed cardiac and lung complications due to the RA. At that point, I didn't really have a choice. Now I am dealing with adreanal insufficiency due to pred use and multiple other complications. Still. it was a necessary med at that time.
I hate that some of your surgeries have left you worse off. I am recovering from bilateral TMJ replacement. I tell people I now have a Terminator Jaw! The dr. told me it would take a year for recovery. It's only been since Aug...sigh.....
I was diagnosed as a teen and I'm now 34. I know that there will be more replacements in my future. We just need to figure out some other issues first.
It is so hard to find a good surgeon. I obviously want someone knowledgeable, but I also want someone who will communicate with my other drs. I tend to have some unusual complications and they must work together. The jaw surgery wasn't too hard since it's a pretty uncommon surgery. There was a surgeon here in VA about 3 hrs away, one in Florida, and one in NY. My local surgeon sent my file to a number of other hospitals for opinions(Duke, Cleveland Clinic, Hopkins...) and they all spoke highly of the surgeon I chose. He and I also "click" so that was an added bonus.
I just find it hard to decide when to take that final step. I've been putting off having my knee and rt. shoulder both re-evaluated by the ortho. It's like you said, I don't want to end up worse off than I am now. The jaw was a no brainer since the bones were fusing together.
I hope you find some relief from your surgeries. If not, I hope you find a dr. who can help you. 30 procedures is an awful lot! No wonder you are frustrated.
Rebecca, it sounds like we have a lot in common. My adrenals are shot and I tend to get odd complications, too. For me, the worst surgical complications have been nerve injuries and serious infections. Two summers ago, the surgeon who caused the nerve damage in my foot, wanted to amputate it when I developed a bone-deep ulcer and infection. Thankfully I was able to see someone else who was shocked the first guy wanted to amputate!And he I saved my foot. But having to be in a wheelchair for over 18 months weakened my bones...which led to two separate fractures this fall...and put me back in a wheelchair. I am REALLY hoping to be back on my feet before this hand surgery, that's for sure! My hope is that ! will regain function of all the fingers on my left hand. right now I can just use my finger and thumb which is permanently bent. the risks are well - I don't even want to go there. I just want to hope for a good outcome.
I hope your jaw surgery gives you the results you want and all that other stuff falls into line, too. I'll bet you would love a break from all of this! Thanks for sharing.
Rose
Copyright ArthritisInsight.com