How do I find a specialist in THR from Hip Fusion

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I've had my right hip fused for 22 years (since I was 21). I'm having a lot of knee and lower back problems and was advised by a physical therapist recently that they are caused by the hip fusion and lack of motion, and they will continue to get worse as time gots on. The hip/knee specialist I've gone to in the past (not the one who did the fusion--he's a foot specialist now) seems unsure about taking the fusion apart and putting in a joint. I would like to get another opinion from someone who has more experience with this procedure. Thanks.

Carole Raymond (Arlington, TX)

-- Carole Raymond (caroler@yahoo.com), August 21, 2003

Answers

Carole, I do not have any answer for you but am also in the same boat. I have had a hip fused for 38 years and for the last 2 years have had knee problems and am currently seeing a physical therapist about lower back pain. I have just begun to search the Seattle area for an orhtopedic surgeon and am going to start with the U.of WA Medical Center. I thought I would talk to one of their surgeons and see if he knows of the best doctor to see about it. I understand it is a much more complicated surgery than a normal hip replacement. Also a very scary thought, I wouldn't touch it without a doctor who was very well versed in the procedure. I appear to have made it quite a long time pain free, I had my fusion done when I was 13, but am now afraid the effects of those 38 years with a fused hip are finally showing up. My P.T. also said it is very much to be expected that the joints above and below a fusion are effected over time. Good Luck T.Kay (Seattle,WA)

-- Theresa K. Bertoldi (theresa.bertoldi@verizon.net), August 21, 2003.

Theresa:

It sounds like we are very much in the same boat. Luckily, a doctor responded to my message yesterday and sent me a local doctor's name. It was a funny coincidence that the same doctor was recommended to me by someone else about an hour earlier so it must be fate. I talked to the office manager at that practice today and she said they don't do fusions much anymore, so it's hard to find a specialist with A LOT of experience taking them down, but they have done them. I felt a lot more comfortable after talking to her. Unfortunately, I can't get in until October 8th.

I think starting at a university hospital is a good idea. When my problem was first diagnosed in 1979, there wasn't anyone in Boise, Idaho qualified to give me a 2nd opinion. My doctor did tests and took x-rays and sent the results to university hospitals, including the U of WA Medical Center for their input. Good luck to you. It's so nice to know I'm not alone.

~Carole Raymond Arlington, TX

-- Carole Raymond (caroler@yahoo.com), August 22, 2003.


Hello, I would love to get an update from you both when you see a doctor. I have had my right hip fusion since I was 18 after I got arthritis and lost blood to the hip after as bike accident when I was 16. It worked great for years but the back pain is getting to be too much. I am 32 now and still "too young" for a replacement. I have just stopped taking drugs for the pain and celebrex does not seem to touch the pain. Looking for some answers if you have any. Thank you, Trevor McDaniel

-- Trevor McDaniel (trevormcdaniel@comcast.net), September 14, 2003.

Trevor:

I've done well for years and was able to deal with the back pain that I had daily. The past 6 months to a year, the problems have gotten much worse, especially with my right knee and lower back. I have a lot of shoulder and hand problems on my right side as well, and I attribute those to the way I sit. I haven't really taken any drugs for it as my stomach doesn't tolerate anti-inflammatories very well. I'm taking more Advil and Aleve than ever before recently, but nothing else. My tolerance for pain has gotten incredibly high...something I didn't realize until I had some physical therapy and found some short-term (a few hours) of relief. That was when I started to realize how much pain I take for granted.

I was able to find a good doctor because of this message I posted. I went to see him last Friday and I've decided to have the THR. I'm not having the surgery until November because of a trip I'm taking the end of October. He's planning to do metal-on-metal and says that due to my age it will be the best bet to last longer. (This is the type Rebekah is having who is 19 who also posted on that website.) He feels my bone is strong and will fuse to the metal easily. The metal joints fuse into the bone rather than depending on cement which wears out. Also, I was told that they don't dislocate as easily, either.

I was worried that my knee was already bad enough and might not benefit from the THR, but he feels that's not the case and my knee and back will love it. His main concern is that I may need to walk with a cane, even said maybe the rest of my life, because he has no way of knowing how strong the muscles are in the fused hip and if they can support the joint. He challenged me to prove him wrong, which I plan to do. I have started doing isometrics that my physical therapist and I worked out to strengthen those muscles, and I am not afraid of rehab. I will be walking with a cane soon if I don't have the surgery, so that's not too scary.

He says I'll be off work about 4-6 weeks and it will be about that long before I can drive. When I had the fusion, I was in a body cast 3 months and other 3 months of rehab, so although 6 weeks is a long time, I've had worse.

I hope this helps...please keep in touch. I've been communicating with a couple of people I met on that website and it helps to talk to someone who understands.

Carole Raymond Arlington, TX

-- Carole Raymond (caroler@yahoo.com), September 14, 2003.


Wow, you all are an encouragement to me. I had a Left hip fusion when I was 15 (after a bike accident when I was 12). I have Osteogenesis Imperfecta (Brittle Bones) which some what complicates the problem. I started experiencing major back pain in the last year and recently was told that it was due to the lack of motion --- thus causing stress on my back. A MRI showed a bulging/herniated disk and a number of other "stressed" discs.

I understand that the procedure is going to be difficult, but it seems if I continue doing what I am doing --- my back will not be functioning.

I starting walking with a cane and it helps somewhat, but I too have chosen to not take medicine and endure the pain for now. Sometimes, I just want it to go away so I am trying to explore my options.

I thank you all for your thoughts and openness, and even though I wouldn't wish this on anyone - it is comforting to know I am not alone. :-)

I wish you all the best. Please keep in touch through updates. Thanks, Denise Nelson

-- Denise Nelson (deniseanelson@comcast.net), October 29, 2003.



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