Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 kristal, my hips have been partially dislocated since childhood. i have sma 2 and have never stood. on occasion it is painful if a nerve gets pinched, but this rarely happens. the joints just casually slip around as i go to/from chair and bed. my discomfort comes from tight muscles and tendons, not the dislocation. it'll be interesting to hear what others say. all the best to your friend! alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 As a type II myself and a female, I cannot offer any insight on this as my hips never were a concern. I am 41 now and still behaving hips, LOL. Angie On 2006.01.27 17:06, Kristal Koehler wrote: > I need some advice for a friend, she gave her permission to post the > situation for replies. Her daughter is 21 months old, type II. > > Seems the doctors are very concerned with her hips. Apparently they are > more that 50% dislocated! YIKES!! They are going to be going to an ortho. > surgeon within the next 6 months. The dr. did say that they are more > aggressive with doing this surgery, but felt that the positives of having > the surgery far outweigh the negatives. > > I thought I remembered hearing that regardless of the surgery, her hips > will become dislocated again eventually. That this is just something most > SMA'ers have to live with...am I right? Any advice for this mom? I greatly > appreciate your insight and advice. Since Brett does not bear weight on his > legs (without his stander), this is not something I am familiar with. > Thanks! Kristal > Mom to Brett- SMA II- 6 years old > " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous > Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 I have had severe hip dysplasia since I was 11 [am now 37]. From all the research I'v read, [for over 3 decades] surgery with sma hip issues has a very low sucess rate, and often causes more pain and decreases quality of life. In my experiences, pain management and customized seating helpee me cope sucessfully with dislocated hips. I'm not a dr and I tell you first and foremost get a number of opinions from professionals. Especially drs who specialized in sma ortopedics. I've had a number of diferent times when resident drs want to rush me into surgery while the experienced chief of ortho drs in the same dept have reprimanded residents and chewed them out ferociously in hospital waiting rooms and hallways to not operate on my hips [you know a dr really screwed up when their collegues do that]. My own opinion with any surgery and SMA is avoid surgery whenever it's safely possible. > > I need some advice for a friend, she gave her permission to post the situation for replies. Her daughter is 21 months old, type II. > > Seems the doctors are very concerned with her hips. Apparently they are more that 50% dislocated! YIKES!! They are going to be going to an ortho. surgeon within the next 6 months. The dr. did say that they are more aggressive with doing this surgery, but felt that the positives of having the surgery far outweigh the negatives. > > I thought I remembered hearing that regardless of the surgery, her hips will become dislocated again eventually. That this is just something most SMA'ers have to live with...am I right? Any advice for this mom? I greatly appreciate your insight and advice. Since Brett does not bear weight on his legs (without his stander), this is not something I am familiar with. Thanks! > Kristal > Mom to Brett- SMA II- 6 years old > " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous > Visit Brett's website at: http://www.our-sma- angels.com/brett/index.htm > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 My hips are constantly in and out of joint. I just don't have the musculature to keep them in socket. I'm type 2. I stood some, but never walked. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Jordan is type II 16 years old, and his hips dislocate as well. Seems to me they've been that way since he was about 3, once he could no longer crawl. The orthos always suggested avoiding the surgery because it could result in pain, would eventually come out of joint again, pinning the hips is limiting, and he didn't really have a functional reason to do it since he couldn't walk. The surgery risk wasn't worth it without a more permanent, and clear benefit. I'd probably get a couple other opinions before I'd have that done. Jay ? re: dislocated hips I need some advice for a friend, she gave her permission to post the situation for replies. Her daughter is 21 months old, type II. Seems the doctors are very concerned with her hips. Apparently they are more that 50% dislocated! YIKES!! They are going to be going to an ortho. surgeon within the next 6 months. The dr. did say that they are more aggressive with doing this surgery, but felt that the positives of having the surgery far outweigh the negatives. I thought I remembered hearing that regardless of the surgery, her hips will become dislocated again eventually. That this is just something most SMA'ers have to live with...am I right? Any advice for this mom? I greatly appreciate your insight and advice. Since Brett does not bear weight on his legs (without his stander), this is not something I am familiar with. Thanks! Kristal Mom to Brett- SMA II- 6 years old " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm <http://www.our-sma-angels.com/brett/index.htm> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 May I ask where are your hips dislocating from? Being born in 1964 and with none of today's medical advantages, my hips never gave me cause to worry. However, at the age of 10 when my back / spine was fused, the surgeon implanted a pelvic rod support to hold the base of my spinal rods still as I was a chubby kid back then and they didnt want it to slide or separate. Yet it has no bearing on my hips dislocating .... or could it? Hm? I never walked nor crawled. As for painful surgery .... not for me. Only one boo-boo occured ... the pelvic rod was too long so I underwent a second operation to shorten it. To assume all and every surgery will be painful is nuts. One has to weigh the good vs bad along with the child's/adult's overall health strength to pull through. The hips being pinned is a new concept to me. If pinning the hips stops them from dislocating which in itself is painful (as some here said it is) then why not seriously consider it? If standing, walking or self-transfers is never gonna be a reality for the one with SMA and sitting is what's left then securing ones hips is a good trade off. That's just my opinion. Weigh it all b4 doing anything anyways. Angie On 2006.01.30 09:13, jondus@... wrote: > Jordan is type II 16 years old, and his hips dislocate as well. Seems > to me they've been that way since he was about 3, once he could no > longer crawl. The orthos always suggested avoiding the surgery because > it could result in pain, would eventually come out of joint again, > pinning the hips is limiting, and he didn't really have a functional > reason to do it since he couldn't walk. The surgery risk wasn't worth > it without a more permanent, and clear benefit. > > I'd probably get a couple other opinions before I'd have that done. > > Jay > > ? re: dislocated hips > > > I need some advice for a friend, she gave her permission to post the > situation for replies. Her daughter is 21 months old, type II. > > Seems the doctors are very concerned with her hips. Apparently they are > more that 50% dislocated! YIKES!! They are going to be going to an > ortho. surgeon within the next 6 months. The dr. did say that they are > more aggressive with doing this surgery, but felt that the positives of > having the surgery far outweigh the negatives. > > I thought I remembered hearing that regardless of the surgery, her hips > will become dislocated again eventually. That this is just something > most SMA'ers have to live with...am I right? Any advice for this mom? I > greatly appreciate your insight and advice. Since Brett does not bear > weight on his legs (without his stander), this is not something I am > familiar with. Thanks! > > Kristal > Mom to Brett- SMA II- 6 years old > " Life is 10% what happens to you and 90% how you respond to it. " > ~anonymous > Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm > <http://www.our-sma-angels.com/brett/index.htm> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 My hips just became dislocated over time because my muscles weren't strong enough to hold them in place. I've never found it particularly painful. I too had a pelvic rod placed during spinal surgery, but it didn't affect my hips at all. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Thank you for the response, this is what I thought as well. But I felt the information would mean more coming from individuals who have actually been there/ done that. Thanks again! Kristal Mom to Brett- SMA II- 6 years old " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm Re: ? re: dislocated hips I have had severe hip dysplasia since I was 11 [am now 37]. From all the research I'v read, [for over 3 decades] surgery with sma hip issues has a very low sucess rate, and often causes more pain and decreases quality of life. In my experiences, pain management and customized seating helpee me cope sucessfully with dislocated hips. I'm not a dr and I tell you first and foremost get a number of opinions from professionals. Especially drs who specialized in sma ortopedics. I've had a number of diferent times when resident drs want to rush me into surgery while the experienced chief of ortho drs in the same dept have reprimanded residents and chewed them out ferociously in hospital waiting rooms and hallways to not operate on my hips [you know a dr really screwed up when their collegues do that]. My own opinion with any surgery and SMA is avoid surgery whenever it's safely possible. > > I need some advice for a friend, she gave her permission to post the situation for replies. Her daughter is 21 months old, type II. > > Seems the doctors are very concerned with her hips. Apparently they are more that 50% dislocated! YIKES!! They are going to be going to an ortho. surgeon within the next 6 months. The dr. did say that they are more aggressive with doing this surgery, but felt that the positives of having the surgery far outweigh the negatives. > > I thought I remembered hearing that regardless of the surgery, her hips will become dislocated again eventually. That this is just something most SMA'ers have to live with...am I right? Any advice for this mom? I greatly appreciate your insight and advice. Since Brett does not bear weight on his legs (without his stander), this is not something I am familiar with. Thanks! > Kristal > Mom to Brett- SMA II- 6 years old > " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous > Visit Brett's website at: http://www.our-sma- angels.com/brett/index.htm > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 thank you as well. Kristal Mom to Brett- SMA II- 6 years old " Life is 10% what happens to you and 90% how you respond to it. " ~anonymous Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm Re: ? re: dislocated hips My hips are constantly in and out of joint. I just don't have the musculature to keep them in socket. I'm type 2. I stood some, but never walked. A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
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