anyone out there who has a fused hip (arthrodesis)?
Posted , 82 users are following.
Hi all am new to this site and am desperate to have communication with anyone who has had a similar operation. I had undiagnosed osteomyelitis as a baby and my hip was fused at about 1 years old. After spending nearly entire childhood on and off in hospital for long periods of time with full plaster casts up to underarms and frames, finally at the age of 12 last operation was done. I have just turned 52 and whilst up till the the last 3 years have managed pretty well. Married had 3 children and worked. Often got extra tired, but have always tried to keep up with others.
In the last 3 years things have been VERY difficult and scary. Endless tests,lack of understanding and neurological type problems, spine issues and still more tests and so far no resolution. I am pretty sure all the problems stem from having a long standing fused hip and it has taken it's toll on the rest of my body, especially spine.
I feel so alone with my problem because I have NEVER met or communicated with anyone who has a fused hip. I have gone on various sites, googled endlessly, but cannot find a single person who has same problem. It would be such a comfort to communicate with someone else with same situation or some support group. Even the medical professionals seem to lack understanding on fused hip and I feel like an alien because of this. So PLEASE, if you have a fused hip,especially one that has lasted this long I would love to here from you and hopefully we can change things for ourselves and others for the better.
8 likes, 234 replies
slrkw99 debra57
Posted
Hi debra57. I'm new to this site but your story caught my attention. My son is undergoing numerous treatments to his hip and joints. He began this journey back when he was 4 now he is 17. He has been having surgery for multiple sites since the age of 9. We are in the hospital now due to his hip pain. I asked the doctor if hip fusion or replacement would benefit him, he said it would be a better option if he was in his 60's. Perhaps the treatments would be better for him now. It seems no matter the option the outcome will be pain. However with the care he has been receiving from his doctors he has been in God's hands. I thank you for your story and your insights into your own ordeal as it is an inspiration to read and learn from.
roscoe28265 debra57
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katephysio debra57
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Hello everyone,
I know this is an old thread - but still highly relevant. It was interesting to read all of your stories, and although every case is different, it's nice to have a common ground to share experiences.
I am 35 years old. I was born with Congentital Disclocation of the Hip. After several failed arthroplasties I was given a hip fusion at the age of 12. Everything went relatively well until about the age of 25 when I started to get knee pain. I saw a surgeon who advised that I would need a TKR at some stage. I went to a physio instead and received exercises to combat an increasingly valgus knee position. The knee pain disappeared after the exercises. It was from there that I decided to study to be a physiotherapist. I refuse to just believe that an operation is the answer.
I get back pain/stiffness every now and then, however I treat this through rotation exercises, heavy resistance training (one legged deadlifts, lunges, core stability exercises) and yoga. I have started to get heart palpitations, which I suspect is because of a locking of my Thoracic spinal joints, referring pain to my stomach and causing irritation of the vagus nerve (just a theory). I am seeing a physio about this, who is focussing on loosening up some of the tight muscles I have around my chest and ribs.
I really cannot stress enough this fact: After your fusion, you still have a healthy body - knees, spine, ankles, neck - they all take a pounding from having to compensate for the loss of an entire joint. They need looking after. Stretch, strengthen and repeat. Arthritis comes from a lack of mobility - when you sit for long periods of time, or don't give the joints the compression they need to become nourished (there's no blood supply to cartilage - it needs to be compressed/kept active to be nourished) then you get arthritis. I recommend consulting physios/chiropractors until you find one that can help you piece by piece, to build up strength and mobility. It's the best prevention we have against chronic pain.
Sciatic pain (that stabbing pain the bum) can sometimes be caused by tight bum muscles in the "good hip" side. If you stretch them and perhaps get some (lucky person) to massage them, the problem may go away.
Knee pain - strengthen your quadriceps and stretch - use a foam roller.
Back pain - foam roller is good to mobilize your thoracic spine which will help to take the pressure off your neck. Practice lying on your side and rotating to the other side with your arm stretched out behind you (google for inspiration).
There is a lack of knowledge in the health profession about how to treat us - be proactive!
I realise that I am only 35, and have some battles ahead of me - some of you have had fusions for many, many years - keep going fighters!
I would be interested to hear from anyone who has given birth with a hip fusion - what was your pregnancy like, and did you have a caesarean or natural birth?
Take care everyone.
novemberfive katephysio
Posted
Hi Kate .. it's great to hear from someone in the medical profession who sounds like they may actually understand the problems that we all seem to suffer. Sadly though for what sounds like most of us, there is a complete lack of knowledge and understanding from the medical profession when it comes to a fused hip. My GP recently refered me to Phyio Direct for chronic lower back pain, the person I spoke to didn't actually know anything about a fused hip and had to get someone else who did to ring me back. The diagnosis is all done on the phone, no actual examination takes place and the end result is they email me video clips, showing me how to exercise. Two months on and the pain continues. I feel I am shouting on deaf ears.
It's over 40 years since I had my hip fused and the latest bout of continual back pain started soon after I had a partial knee replacement in 2015. My knee had the cartiladge missing completely on one side (medial) and the result was bone resting on bone... I had to have the PKR done there was no option.
Having had my pain killers I am off to do my exercises. It sounds as though you are managing it .. long may it last !
fawncy_94207 katephysio
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I am a RN (17 years); fused hip for 26 years.
I have had 4 pregnancies all born via c-section. I did have an abdominal hernia with the 4th pregnancy related to mobility issues, scar tissue, and weak muscles.
I also agree with being proactive In your medical care; nobody knows your body better then you.
john1024 debra57
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Hi debra57 - I'm replying to your post of over a year ago, and hope you are still here. I too have a fused hip from osteomyelitis contracted when I was 10 in 1958. I have mumerous related issues that have worsened over the past 58 years, similar to yours. Respond should you like to share experiences, commiserate, whatever.
mindy86412 debra57
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Hi. My hip was fused when I was 22 because of severe arthritis from a benign tissue tumor. I've been living with it fused for 23 years and am extremely active and not in any major pain. However, for a couple years I've had recurring, minor compensating pains in my knees, back, ankles and other hip. It doesn't limit my active lifestyle right now, but I'm considering a conversion to hip replacement before these develop into major problems and I'm looking at some other major problem to treat. It sounds like some of you have had successful conversions to hip replacement. Am I crazy to consider this surgery and recovery while my children are pretty young still?
dorby54 mindy86412
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Hi. Yes, I've known 2 people who have had successful conversations from fusions to artificial hips. However, both of them had natural fusions. (no surgery) One of them has had to have the hip replacement 3 times now over 12 years. I have read articles and one ortho surgeon told me the risks were high for me as I had a lot of infection in my pelvis prior to the fusion. The risk is high for getting severe infection again.
katephysio mindy86412
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Hi Mindy, would you mind saying if you delivered your kids by c-section or 'naturally' (for want of a better word). Anything you could write about your experience with carrying the babies and delivery would be very much appreciated.
Lvinbr katephysio
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I have hada fused hip because of a congenital dislocation. Â I started having surgeries at 16 months. Â My last surgery was when I was 15. Â I am 53 now. Â Both of my children were delivered via C-section. Â It is not clear that my hip is the reason. Â The C-sections were quite easy, compared to the hip surgeries. Â I did have severe lower back pain during pregnancy but PT helped. Â I still have lower back pain, knee pain and neck pain related to my body mechanics. Â I tie my shoe behind my back, leaning against a wall. Â I walk 5 miles a day. I am happy to answer any other questions you have.
mindy86412 katephysio
Posted
Hi, Kate. I had 2 babies naturally at age 35 and then 39. I didn't have any complications or pains during pregnancy, (other than some normal small things that anyone can get from pregnancy). I went into the pregnancies with strong, active health and no pains due to my fused hip so I'm sure that helped. Both births were completely natural with no painkillers and were delivered by midwives in midwifery centers. There were no complications. From the outset, I explained my fused hip to make sure they were comfortable and on board. And they were. Also, I definitely wanted a group of midwives that work closely with a hospital and retain rights in a hospital or work with a doctor in a hospital just in case I had any complications. And the midwife center was within a mile of the hospital.
Before I got pregnant I talked to another woman who gave birth naturally so I know of one other success.
I hope this helps!
katephysio Lvinbr
Posted
Hi Lvinbr,
Thank you very much for sharing your story. I am also familiar with the shoe-tying technique - It's inspiring to hear how people carry out their activities of daily living. We are great at adapting. Thank you again - Kate
katephysio mindy86412
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Hi Mindy
Thank you very much for your reply. I guess the key is to be strong and fit to the best of your ability. It's inspiring to hear how you managed. I'm grateful that we can share our stories with each other. Thanks again, I really appreciate your answer.
mindy86412 katephysio
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You are very welcome! I too am really appreciating this discussion. In my 23 years with a fused hip, I've only ever talked with one other person with one. So this is fantastic!
Jeff45023 debra57
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I've had a hip fusion for about 19 years. Had a slipped epiphysis around age 16, hip joint flatted out because of necrosis, and that was given the option of a replacement or fusion. Chose the fusion, had it done around age 19, and was pretty happy with it, and still am to some degree. Last month, 12/2016, I visited a top orthopedic surgeon named Joshua Jacobs at Chicago's Rush Hospital orthopedic center to inquire about having the fusion taken down and converted to a hip replacement. I was surprised when he told me that they could absolutely do the conversion from a fusion to a replacement. About 5 years ago I visited an ortho surgeon in the Chicago suburbs, and he wasn't nearly as optimistic and was more on the negative side about the whole thing. So anyways, Chicago's Rush hopsital has surgeons that will do this type of procedure. Dr. Jacobs did explain that recovery would be much longer going from a fusion to a replacement than a typical hip replacement in an elderly person type of operation. The one thing he said that scared me was that in some cases, the person needs to always use a walking aid for the rest of their lives, a cane for example. I currently walk with a limp, but do not need any type of walking device with my fusion. I work out regularly, am in great shape, and the thought of having to use a cane for the rest of my life was not good. He said that in some cases the muscles are so atrophied that they simply do not come back to life. Anyways, I decided to not do the conversion to hip replacement at this time. I have a good career, the pain is not that bad, and I just don't want to go through something like that at this point in my life. I'm glad to know where I could go if I want to revisit this again later in life.
dorby54 Jeff45023
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Nice to know, however, not being a US citizen, getting an operation in the US would not work for me. I have used a cane on and off for many years - mostly off. If I'm going for a long walk (over 30 minutes) I always take a cane, or if I'm going to a hilly area I also use one. (I have a hard to time walking up a hill) I'm now over 60, and have decided to stick with the fusion for the rest of my life. I finally found a shoe repair person who has listened to what I need, and the lifts on my shoes are amazing - the most comfortable I have felt in 25 years.
danielhipfuse Jeff45023
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I have an appointment tomorrow with the doctor Burton and Arrowhead Orthopedics in Victorville California where I live I broke my head when I was 14 they had to fuse it when I was 15 I've been like this for 20 years and they said they have to do a total custom hit for me I had a CT scan done tomorrow's my appointment to talk to the surgeon's about the procedure. Im very excited but also scared. And I'm glad I read your post about the atrophy in the muscles cuz I'll have to see how that affected my muscles as well but I'm still pretty strong my legs very strong
danielhipfuse
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Jeff45023 danielhipfuse
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Daniel,
Good luck tomorrow!! Sounds like you're around 35 years old. Are you in a ton of pain? Is day to day living really tough for you? For me, it's not that bad. I'm 39, have had the fusion for almost 20 years. I say to myself, if this is as bad as it gets, I'll be ok, I don't need to go through the fusion to hip replacement operation at this point in my life. I work with computers, so I'm able to sit at my job, I do end up shifting positions alot just to stay somewhat comfortable. Standing is pretty hard for more than 15 to 20 minutes, but ironically I could pretty easily walk 5 miles without stopping! Anyways, unless you're in unbearable pain and your life is extremely difficult with the fusion, I suspect the surgeons will encourage you to go as long as you can with the fusion before undergoing a replacement operation. Even though the surgeons at Chicago Rush would do the operation, and left it up to me to decide, they did sort of lean towards continuing on with the fusion until when and if it makes life unbearable (which is sort of a depressing in itself). But I know what you mean, it is scary. Part of me would just love to have the operation and hope for the best, and get that motion back in that hip....to be able to tie a shoe (my current method for tying shoes sucks, I put the foot/shoe on a wall behind me, and lean down and through my legs to tie it!!!), to be able to sit normally at a booth in a restaurant, some of those little things that so many people take for granted! I guess personally, I can still enjoy life with the fusion, so maybe in 5 years I'll reevaluate. I'd love to hear about how tomorrow goes and what they say.
katephysio Jeff45023
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Haha, I tie my shoes the same way, can totally understand. Thanks for your update about the surgeons in Chicago, nice to know there's options