Problems with SI Joints - anyone?

[Guest guest]

Hi all,

I asked about this in another mail, but maybe you didn't read it

because it had the subject " Attn. Sue G " . So I figured that maybe I

should try to post again with a different subject line... It would be

great to hear about your experiences with these problems if you have

them too. I am especially interested in hearing if anybody had

surgery done for this, if so, what did they do, who did it and

where... And what kind of doc is really the right one? E.g. an

orthopedic surgeon or a neurosurgeon?

I'll try to edit my post to Sue here....

This is really nothing compared to what many of you deal with on a

daily basis... But it is a problem, and it has started to test my

patience now after living with it for many years... Especially when I

am travelling it is a problem, there I don't have my hospital bed...

But I also miss so much to be able to lay out flat and get some real

rest for my whole body...

So... Maybe some of you can help... I have problems with my SI

joints, and I have not been able to have any shed any light on it

here. I have asked at a " competency center " for rare disorders, but

they don't know anything about it. Last time I was there, almost

three years ago, a PT there asked me if I had checked if somebody

could do surgery on me in the US. Then we were in the gymnasium,

trying to do some exercises as careful tummy crunches. They built up

the mattress with lots of pillows and such for me, and even if they

had done that, my SI joint on the right side still went out. So they

got a little demonstration as to how little it takes, I guess. But it

has gotten a whole lot worse since then.

There is a possibility of applying for funding for going to the US

and have surgery done, if you can prove that nobody here has the

right competency to deal with the problem. It is not easy, but it can

be done. I would have to go through quite a process though, first be

referred to the county hospital, then referred to the National

Hospital in Oslo. A surgeon there has the last word. But it is a fact

that the boss there has a thing with EDSers where he easily brush

people off as not needing any help. He is an arrogant b******....

(parden my french:) So... As I see it, I have to do it right in the

first place. That is my only hope.

What I need to do, is to have a letter from a doctor that obviously

has a lot more knowledge than he does. Because nobody dares to stand

up to him here, I think... The best thing would be to have a letter

from a doc in the US. Then I can argue that whatever the " top surgeon

boss in Norway " says, he does not know much, because it is a fact

that with a population of only 4.4. Mill people in this country and

few people diagnosed with this " rare condition " (which is not that

rare anyway, but I am not going to focus on that), he does not have

the opportunity to really build any knowledge. That does make sense

and should be possible to get them to understand. That way I have

taken his credibility from him in the first place, and the Social

Security have to listen to what I have to say and what the US doc has

to say. This doc would easily be able to say that he has experience

with EDS... If I also maybe could get hold of a surgery report from

another person who have had this done, that would be perfect. I know

of two others who have succeeded in this. Both were turned down in

the first place because of this doctor. I wrote the complaint case

for one of them and was somewhat involved in the other one, but then

only by getting info and discussing and such. One of them went to

Denmark, to a shoulder doc that had been taught by one that had been

taught by the US shoulder spec. that was at the Philly conference (I

always forget his name). The other one went to the US to a doc that

has done surgery on other EDS'ers. Both of these had scapula problems

though, not SI joint problems.

I have been sleeping in a sitting position for two years now and it

is so hard, it is amongst others tough on my back, but I have no

choice, because if I try laying down, it pops out and locks up with

nerves compressed, I think. There is now way I can sleep with it

" out " (can any of you who have this problem?)... I can't lay down on

a PT or examination bench either without it happening. Or on a coach

or whatever... I can for a little while if I have my knees up, but

you can't rest like that since you have to concentrate and use your

legs. I don't know for sure what is happening, but it feels like it

slides and then locks up, causing nerves to be trapped. And of course

the muscles around the joint also cramps up as a reaction to it. The

pain is in the joint area and radiating down my leg... I was

wondering if it maybe could be fixed surgically by fusion or another

technique. But I have had no luck here, I have brought it up with my

RD, but not even been able to get X-rays or anything done, so I can't

get anywhere. I only get the answer " we know what happens " (read: it

pops out, you have EDS - live with it)... The funny thing is that

this is after he has learned more about EDS at conventions and

such... Earlier he listened more and trusted my judgement. Actually I

had a X-ray referral for it earlier, but my mom died a few days

later, before I got it done and I did not get to it until the

referral was too old. So I need a new one. Also I think I probably

need an MRI too. I am hoping to find a way of getting that done

before going to the conference, so I could bring the films...

I haven't been able to sleep properly in a normal bed for years, but

up until 2 years ago, I could manage sleeping in my waterbed at home.

But since that doesn't work anymore...

I would also appreciate opinions on what you think your doc would

think if you presented such a problem to him. Would it be considered

a minor problem, or?

Thanks a lot for replying... I really, really appreciate it!!!!!

Take care,

Aase Marit