hips out of joint?

January 19, 2007

My went to the doctor yesterday and we found out his hips are

out of joint. The right one is 60% and the left one is 30%. The

doctor says he will need surgery because they will both eventually come

out and once they are out they can't be put back in. Has anyone ever

dealt with this? Also, the reason we brought him to ortho was because

he can't straighten out his legs without pain in the top of his knees.

Any ideas on that would be helpful too.

January 19, 2007

Hey,

I've had that happen with one of my hips and had to get it popped back in. I

don't know if it is true or not but after my surgery the doctor said my other

hip was coming out also but I've never gotten the other one done. Having a body

cast was a bit annoying but it is doable. I had mine placed in and had a pin to

hold it in. I don't know if that is what they still do or maybe it has

changed.(I had the surgery about 10 yrs ago) After healing the area where the

pin/scar was it did irritate me a lot and caused a burning type of feeling, so

I had the pin removed after a few yrs and that helped. That surgery was easy

and no trouble. The only main problem I've had after surgery with that is the

scar area was very sensitive. I didn't like anything/anyone touching the area

and if the waistline of my pants hit it, it would get irritated. Hopefully

that helps some!=)

-Preet

SMA 2, Age 20

im2nr2trn <im2nr2trn@...> wrote:

My went to the doctor yesterday and we found out his hips are

out of joint. The right one is 60% and the left one is 30%. The

doctor says he will need surgery because they will both eventually come

out and once they are out they can't be put back in. Has anyone ever

dealt with this? Also, the reason we brought him to ortho was because

he can't straighten out his legs without pain in the top of his knees.

Any ideas on that would be helpful too.

---------------------------------

Don't pick lemons.

See all the new 2007 cars at Autos.

January 19, 2007

I'm 36, and I'm pretty sure my hips have come

in and out of joint a billion times. I think my right

hip is at least partially out of place on a permanent

basis. I guess my muscles are just not strong

enough to keep the ol' hips locked in place.

It's never really bothered me. Of course, I've

never been able to walk, so I can image it

would be bad if someone was still

ambulatory.

Jenn

>

> My went to the doctor yesterday and we found out his hips are

> out of joint. The right one is 60% and the left one is 30%. The

> doctor says he will need surgery because they will both eventually come

> out and once they are out they can't be put back in. Has anyone ever

> dealt with this? Also, the reason we brought him to ortho was because

> he can't straighten out his legs without pain in the top of his knees.

> Any ideas on that would be helpful too.

>

January 19, 2007

Thank You Preet and ,

Pretty much you both told me what the doctor said yesterday which

makes me feel better because I wasn't to sure he knew what he was

talking about. He said some people opt not to have the surgery and

some do. Of the people that opt not to, 50% have pain and irritation

of the skin in that area. The others aren't bothered by it at all.

He did say we would come back in one year and remove the pin. I

asked him could we wait a couple of months and see if the other one

came out more so that both surgeries could be done at the same time.

He is thinking about that. We are now wondering if it should be done

at all! He is 4. I don't want to hurt him now for no reason. But

if we opt not to and he is in pain the rest of his life.... I can

only imagine the guilt.

My

went to the doctor yesterday and we found out his hips are

> out of joint. The right one is 60% and the left one is 30%. The

> doctor says he will need surgery because they will both

eventually come

> out and once they are out they can't be put back in. Has anyone

ever

> dealt with this? Also, the reason we brought him to ortho was

because

> he can't straighten out his legs without pain in the top of his

knees.

> Any ideas on that would be helpful too.

>

> ---------------------------------

> Don't pick lemons.

> See all the new 2007 cars at Autos.

>

January 19, 2007

Hi All,

I just wish to say that what Jenn is telling below about herself is probably

true for many people with SMA. The doctors say that for whatever reason our hips

tend to get out of joint very easily. Very often, they also slip back in place

all by themselves. Often the person him/herself is not even aware that this is

happening. There is usually no pain involved. That is why surgery is usually not

necessary.

smiles

Taya

[ROSKAPOSTI] Re: hips out of joint?

I'm 36, and I'm pretty sure my hips have come

in and out of joint a billion times. I think my right

hip is at least partially out of place on a permanent

basis. I guess my muscles are just not strong

enough to keep the ol' hips locked in place.

It's never really bothered me. Of course, I've

never been able to walk, so I can image it

would be bad if someone was still

ambulatory.

Jenn

>

> My went to the doctor yesterday and we found out his hips are

> out of joint. The right one is 60% and the left one is 30%. The

> doctor says he will need surgery because they will both eventually come

> out and once they are out they can't be put back in. Has anyone ever

> dealt with this? Also, the reason we brought him to ortho was because

> he can't straighten out his legs without pain in the top of his knees.

> Any ideas on that would be helpful too.

>

January 19, 2007

Hi,

My son Ben who is 3 yrs with SMA II. Both of hips are

partially disallocated (not very severe) and the

doctor here suggests to have a surgery (a special type

of pericapsular acetabuloplasty) to correct them. He

thinks that having suggery now might be much easier

than later if his hips are completely degenerated. My

questions are:

1)For those of you who had gone through the surgery,

do you think that the surgery helps in terms of

strength and functionalities?

2)How long does the surgery take? how difficult is it?

3)if his hips are back into the socket and he

continues to use standing frame, will it help his hips

develop normally?

Thank you very much for your input!

jenny

--- Preet <dreamzofx23@...> wrote:

> Hey,

>

> I've had that happen with one of my hips and had

> to get it popped back in. I don't know if it is

> true or not but after my surgery the doctor said my

> other hip was coming out also but I've never gotten

> the other one done. Having a body cast was a bit

> annoying but it is doable. I had mine placed in and

> had a pin to hold it in. I don't know if that is

> what they still do or maybe it has changed.(I had

> the surgery about 10 yrs ago) After healing the

> area where the pin/scar was it did irritate me a

> lot and caused a burning type of feeling, so I had

> the pin removed after a few yrs and that helped.

> That surgery was easy and no trouble. The only main

> problem I've had after surgery with that is the scar

> area was very sensitive. I didn't like

> anything/anyone touching the area and if the

> waistline of my pants hit it, it would get

> irritated. Hopefully that helps some!=)

>

> -Preet

> SMA 2, Age 20

>

> im2nr2trn <im2nr2trn@...> wrote:

> My went to

> the doctor yesterday and we found out his hips are

> out of joint. The right one is 60% and the left

> one is 30%. The

> doctor says he will need surgery because they will

> both eventually come

> out and once they are out they can't be put back

> in. Has anyone ever

> dealt with this? Also, the reason we brought him

> to ortho was because

> he can't straighten out his legs without pain in

> the top of his knees.

> Any ideas on that would be helpful too.

>

> ---------------------------------

> Don't pick lemons.

> See all the new 2007 cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

Don't get soaked. Take a quick peak at the forecast

with the Search weather shortcut.

http://tools.search./shortcuts/#loc_weather

January 19, 2007

I agree Angie, but the doctor claims that it will be out within 6

months and once it comes out, they can't put it back in.

My

> > went to the doctor yesterday and we found out his hips are

> >

> > > out of joint. The right one is 60% and the left one is 30%.

The

> > > doctor says he will need surgery because they will both

> >

> > eventually come

> >

> > > out and once they are out they can't be put back in. Has

anyone

> >

> > ever

> >

> > > dealt with this? Also, the reason we brought him to ortho was

> >

> > because

> >

> > > he can't straighten out his legs without pain in the top of

his

> >

> > knees.

> >

> > > Any ideas on that would be helpful too.

> > >

> > > ---------------------------------

> > > Don't pick lemons.

> > > See all the new 2007 cars at Autos.

> > >

January 19, 2007

Thank you Taya, that seems to be what everyone is saying. I feel so

much better today than when I was in that doctors office. We have

pretty much decided not to do the surgery. We might get one

more " doctor's " opinion, but our mind is pretty much made up by what

you all are saying.

> >

> > My went to the doctor yesterday and we found out his

hips are

> > out of joint. The right one is 60% and the left one is 30%. The

> > doctor says he will need surgery because they will both

eventually come

> > out and once they are out they can't be put back in. Has anyone

ever

> > dealt with this? Also, the reason we brought him to ortho was

because

> > he can't straighten out his legs without pain in the top of his

knees.

> > Any ideas on that would be helpful too.

> >

>

January 19, 2007

Hello , good questions! I should have asked those! I'm anxious

to hear the answers. When is Ben's birthday?

Terri

> > My went to

> > the doctor yesterday and we found out his hips are

> > out of joint. The right one is 60% and the left

> > one is 30%. The

> > doctor says he will need surgery because they will

> > both eventually come

> > out and once they are out they can't be put back

> > in. Has anyone ever

> > dealt with this? Also, the reason we brought him

> > to ortho was because

> > he can't straighten out his legs without pain in

> > the top of his knees.

> > Any ideas on that would be helpful too.

> >

> > ---------------------------------

> > Don't pick lemons.

> > See all the new 2007 cars at Autos.

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

______________________________________________________________________

______________

> Don't get soaked. Take a quick peak at the forecast

> with the Search weather shortcut.

> http://tools.search./shortcuts/#loc_weather

>

January 20, 2007

>

> My went to the doctor yesterday and we found out his hips are

> out of joint. The right one is 60% and the left one is 30%. The

> doctor says he will need surgery because they will both eventually come

> out and once they are out they can't be put back in. Has anyone ever

> dealt with this? Also, the reason we brought him to ortho was because

> he can't straighten out his legs without pain in the top of his knees.

> Any ideas on that would be helpful too.

>

I have had 2 hip surgeries (first was on both hips to put in the

hardware when I was 4, then when I was 5 the second was to take out

the hardware on the left and to redo the right.) 18 years later, I

still have the pins in my right hip but it has long since dislocated

because of my constant leaning to that side. After my hip came out of

joint, the socket eroded away (don't ask me how) and now my hip can

never be put back in joint. It is not too painful, however my leg is

noticably crooked. I would encourage your son to get the surgery done

before his hips come out of joint. If put off too long it can be

irreversable and he could live with unnecessary pain. It is a simple

surgery, especially for a younger child. After surgery he will be in a

cast for awhile but if you do the surgery before he enters

kindergarten, he won't have to miss school go to school in a big,

bulky cast. Hope this helps!

January 21, 2007

,

It's great that you are asking questions to other families. These

boards are so great for sharing information and experiences.

I thought I'd let you know about our experiences with hip dislocation.

My son, Danny, is 24 and has SMA type 2. We found out his hips were

dislocated around 10 years old, but they had apparently been that way

since he was very young. Our ortho surgeon back then, and many

articles I've read about it since, said that surgery for the hip

dislocation in SMA patients is not a permanent fix. Because there is

no weight bearing, standing, etc. and the muscles around the hip are

too weak to keep it in place, there would most likely be a recurrance

of the dislocation. Because of that, he said the risk from surgery of

having respiratory and other kinds of complications was not justified.

I read a post today on another forum by a mom whose daughter had hip

surgery last October and it is already out again. Now her doc is

rightly hesitant to do it again. I've also read several articles about

studies done about this type of surgery for SMA patients on

www.pubmed.gov if you'd like to check them out. Here's a link to a

list that includes some of them.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed

As for Danny, arthritis eventually developed in the hip area, and

Danny had some minor arthritis pain off and on during his teen years,

the worst being in really cold weather. However, the pain or

discomfort was treatable with anti-inflammatory meds, Lidoderm patches

on the hips when needed, and a good gel wheelchair seat cushion. It

never really slowed him down. He never walked on his own, he used a

power chair since age 4, and always has had a very busy social life.

Now, at 24, he can spend as much as 14 hours or more in his power

chair without any problems or pain caused from his dislocated hips.

My suggestion is to get a couple more doc opinions, especially one by

an ortho doc that is very experienced with SMA or neuromuscular

diseases. Perhaps your local MDA office's clinic would be a place look

for such an experienced ortho doc.

I know these kind of decisions are tough. You're doing the right thing

by asking lots of questions.

Hang in there,

>

> Hi,

>

> My son Ben who is 3 yrs with SMA II. Both of hips are

> partially disallocated (not very severe) and the

> doctor here suggests to have a surgery (a special type

> of pericapsular acetabuloplasty) to correct them. He

> thinks that having suggery now might be much easier

> than later if his hips are completely degenerated. My

> questions are:

> 1)For those of you who had gone through the surgery,

> do you think that the surgery helps in terms of

> strength and functionalities?

> 2)How long does the surgery take? how difficult is it?

> 3)if his hips are back into the socket and he

> continues to use standing frame, will it help his hips

> develop normally?

>

> Thank you very much for your input!

> jenny

January 22, 2007

I just wanted to send out a really big thanks to everyone that

replied to our question. You have all helped us in making our

decision and we really appreciate all the advice. Angie, I have a lot

of respect for someone that goes " against the grain " . I want to look

at SMA from 's point of view and I think that what you said

really helps me do that. It does bring up more questions though.

(You'll find that I'm full of them!) When did everyone stop using the

standers? How long, if at all, was everyone in swim and how much do

you think it helped? Thanks, Terri

> > > > My went to

> > > > the doctor yesterday and we found out his hips are

> > > > out of joint. The right one is 60% and the left

> > > > one is 30%. The

> > > > doctor says he will need surgery because they will

> > > > both eventually come

> > > > out and once they are out they can't be put back

> > > > in. Has anyone ever

> > > > dealt with this? Also, the reason we brought him

> > > > to ortho was because

> > > > he can't straighten out his legs without pain in

> > > > the top of his knees.

> > > > Any ideas on that would be helpful too.

> > > >

> > > > ---------------------------------

> > > > Don't pick lemons.

> > > > See all the new 2007 cars at Autos.

> > > >

> > > > [Non-text portions of this message have been

> > > > removed]

> >

______________________________________________________________________

> > ______________

> >

> > > Don't get soaked. Take a quick peak at the forecast

> > > with the Search weather shortcut.

> > > http://tools.search./shortcuts/#loc_weather

>

> --

> Angie

>

> Please visit my favourite websites:

>

> for Ford Model A enthusiast

> http://www.recap.on.ca

>

> a memorial website of my father

> http://www.roybebee.ca

>

> The Monarchs (50's & 60's band my Uncle plays in)

> http://www.the-monarchs.ca

>

> a chapter of Model A Owners of Canada Inc

> http://www.trilliumchapter.ca

>

> an electric wheelchair hockey league

> http://www.cewha.ca

>

January 22, 2007

I used the standers until about 5th or 6th grade. I

absolutely hated them at the time, but now I

kind of wish I could do that again. I swam until

about the same time. When I entered middle

school, it seemed like school personal were

constantly complaining about how heavy I was to

lift, so I avoided any activities that involved

getting out of my chair, including bathroom

breaks!

Jenn

>

> I just wanted to send out a really big thanks to everyone that

> replied to our question. You have all helped us in making our

> decision and we really appreciate all the advice. Angie, I have a lot

> of respect for someone that goes " against the grain " . I want to look

> at SMA from 's point of view and I think that what you said

> really helps me do that. It does bring up more questions though.

> (You'll find that I'm full of them!) When did everyone stop using the

> standers? How long, if at all, was everyone in swim and how much do

> you think it helped? Thanks, Terri

January 25, 2007

I stopped using a stander after 1st grade. The contractures in my

knees were already present and it was just too painful. I continued

with PT at school and home under sadistic therapists. More sprained

ankles and torn ligaments than I can count. They never listened when I

said it hurt, and they pushed against me even when I told them I was

too tired to push anymore - hence, an untreated dislocated ankle.

Unfortunately, this abuse scarred me and I didn't discover gentle and

therapeutic range-of-motion and resistance exercises until my early

30's. I now suffer a lot of pain and fragility as a result, but am

diligently working the kinks out.

Alana

SMA II - Age 40

Berkeley, CA