Hi Joan,

I didn't know if you saw my other post. I did get your message, thank you.
Iam not so good at this computer stuff. I did send you something back, but I don't think it went through.
My hip problem started at birth. Congenital also. In 1999 I had a hip replacement and ended up with siatic nerve damage, right foot drop, and RSD.
I live near Springfield so it was nice to hear from someone close to home. I have searched for support groups in this area and there are none. This is a great place to talk to people. It just makes me feel better, not so alone.
I hope your doing well.

Sue K.

wow, also congenital from birth and then hip replacement with the same damage. that is something. i was surprised to find rsd people, never mind one with such a similar past. i look forward to chatting here. sometimes i forget who i told what to and repeat myself so excuse me if i do.
did you have your surgery locally? my last replacement was at the new england baptist ... the damage was already done from the surgery in fall river where i had it replaced a year before. wish i had gone there for that reconstuction and replacement first. i had my first hip replacement in 1974.
well, nice to meet you ..... sorry you are here. joan

Hi Joan,

I had a reconstruction done of the hip in 1987. I did ok for a while, but one morning I got up in 1998 and could't walk. I went to my doc and thats when he said I needed the hip replacement. I had an arthritic cyst on the hip socket. I had my operation at Baystate Medical in Springfield. When they got in there, the postier eall had been eaten away by arthritis. when they put in the metal walls to replace the bone, my sciatic nerve got damaged in 3 places. I've gone down hill since then, Thats how I got the RSD. I hope your doing well.

Sue K.

my doctor in boston told me they had stretch the nerve in Fall River and that is what caused the palsy with the foot drop and numbness and the rsd was just a bonus i guess.
may i ask what treatments you had as a child forthe congenital problem? mine was not diagnosed until i was four, i was falling alot, and then i spent two years in body casts from my underarms to my toes with my leg in all sorts of positions to try to get the hip in the socket the right way. i ended up with a 4-5 inch difference in my leg lengths from that. over the course of the three hip replacements, that is almost normal now. but of course now with the palsy and the rsd i am in a differet mess .... i did manage to have a family and become an RN despite it all, but that is all gone now.
do you go to a pain clinic now? i just use my pcp at present. joan

they found my hip problem when i eas 2. i also had the full body casts. My grandfather was the one who noticed the problem. He took alot of home movies and told my parents to look at how i walked on the films. my right foot was pointing out sideways when i walked. i also had the length problem. my right leg was always shorter. I somehow managed to work and have a family. I have twin daughters, 26yrs old and a 22 yr old daughter, 5 grandchildren. work for me is also gone now. i really miss it. its one of the big problems i have had to deal with. i would give anything to go back to work.
i've been going to a pain clinic since 1999, 3 months after the hip replacement. its like my second home if it wasn't for them i don't know what i would have done. my orthopedic dr. wanted me to just deal with the pain.
Joan, its so nice to be able to talk with you. thank you so much.
hope all is well.

Sue k.

hi sue. the similarities are amazing. my grandparents kept telling my parents there was something wrong too, but my mother, who was not and is not a very nice person kept telling them i was fine until the constant falling made them have to address the problem.
i don't think i ever met someone who has been in the body cast .... wow, my mind is amazed. other than mine being in my left leg, i think we are twins! my birthday was yesterday and i am now 55, been married almost 38 years and
i have two children, a daughter who is 36 and a son who is 35 tomorrow and i have six grandsons, 18, 17, 15, 14, 7, and 5.
i too miss work so much. i was talking to my therapist yesterday about how that was when my disease took over, up until then i had fought a good fight.
what did you do for work? i was a nurse, ortho, surgical, then icu and recovery room. i took a leave of absence to get my hip replaced and never got to go back. i loved it beyond love ... and miss it all the time.
now, is your pain clinic close? what do you find you get out of the pain clinic? my pain is getting worse and has spread to the right foot and i am told i have reynauds in my hands but i often wonder if it is the rsd, and i am considering a clinic but i don't know what i want to do at this point. i have always used my pcp and just a therapist, except for the facet blocks for my back that i went to the baptist for. i have a bad degeneration of L4-L5 from the leg length difference and walking like that for years.
well, i look forward to getting to know you better. joan