Re: Attn. Sue Ginley

[Guest guest]

In a message dated 2/18/04 7:43:14 AM Eastern Standard Time,

aase.m@... writes:

<< But don't you think it

would be best for me to e-mail before the conference? If you can't

give me their e-mail address, >>

Hi Aase,

I will send you Dr. Kumar's email addy, although he is in India for five

weeks, well four now. I can also send along his office number.....he is always

willing to talk with an EDSer and try to help. When you call him, just mention

EDS and that you are calling long distance from Norway. I think he is

supposed to eb back March 18th, or there abouts.

As far as Dr. Lavallee, I only have the info in the last conferecne booklet.

I am not sure if this number is his home number or office number, but I can

give it to you. I don't have an email addy for him.

I'll send this privately.

Hugs,

Sue

[Guest guest]

Hi again Sue,

Thanks so much!!! I really can't wait to get there. It will be so

wonderful to see all you guys again. Going to the conferences is a

bit like going home, if you know what I mean...

The problem is, that even if some of them could " point me in the

right direction " , I could never afford going over there out of my own

pocket for a consultation. That I know for sure. It would never work.

But even if one of them don't normally work that much with such

issues, maybe even only giving the doc a quick " demonstration " at the

conference would make him able to write some letter that at least

could help me get the right attention here at home. I have no hope

whatsoever that I could get anything done here. It is very difficult

to get them to do surgery on us at all, because of their lack of

experience, but if I had some kind of recommendation that they do

this kind of thing over there with luck, it would be of tremendous

help, I think... Maybe if I could write a short e-mail to one of them

before the conference and explain?

I am working on trying to get some help now in getting X-rays and an

MRI done. If that would work out, I could bring these with me, with a

translation of the report that came with them, and e.g. let one of

the docs take it with them back after the conference. I could just

give them money so they could mail it back to me here afterwards.

I am just trying to think out loud here... It has been years, and

although I know it is nothing compared to what many of you struggle

with on a daily basis, it is starting to really do a number on my

patience... I sort of feel that I never get proper rest because I

can't lay down normally.

I travel a lot, especially now after I got elected as the Pres. of

the Norwegian Psoriasis Association, so hotels are something I have

to deal with. It is one thing here in Norway, because we always use

thick duvets, so I ask for 6 of them to prop me up in my bed. It

becomes pretty comic to say the least... I have had so many funny

replies when asking. You should see the look on the face of a young

boy that brought me the duvets last time I was in Oslo... I think he

must have been thinking that I was totally nuts. When I call the

reception, they just don't believe it, they think I am joking. So now

I am starting off with " I know you are going to think I am crazy, but

I am not joking. You see, I have real problems laying in a normal

bed, I have a special bed at home.... So do you think you could

please bring me.... extra duvets? " ... It is so silly... But it is the

only way to get any sleep. Sometimes it does not work well at all,

after having this thing happening oodles of times, having to roll our

of the bed an onto the floor to get it back where it belongs... It is

tiring... And pain meds do not help at all for this. I don't even

know exactly what happens, but it feels like the SI joint, most often

the right one, slides and locks up in the wrong position, with nerves

trapped. It hurts a lot. I have had more experiences lately where I

have also had trouble getting it back in.

So it would be wonderful if I could get something done with it. I did

try searching on Medline before the last conference, but did not find

anything on this kind of surgery. The only thing I did find, was that

some has it done when they have scoliosis surgery fusing the whole

spine...

I am not sure who would be best to ask about this of the ones coming.

The ortho. surgeon might be a good one, even if he specializes in

shoulders... I sure remember the name of Mark Lavallee. Maybe both

him or dr. Kumar could be good ones to talk to? Dr Kumar sounds so

wonderful... Sure isn't many of such docs... But don't you think it

would be best for me to e-mail before the conference? If you can't

give me their e-mail address, maybe you could forward my e-mail?

Because if they recommend that I do something before the conference,

I could make sure to get it done. It is a bit scary to just hope to

be able to grab one of them in the hallway at the hotel, and maybe it

doesn't work out at all this time either. And I have no idea when I

would be able to go again. BTW, I had problems mailing you, some

spam filter stopped my mail. So maybe I would have to mail it to

somebody else and then have them forward to you... Or I could make

myself a free mail address, hotmail or something like that...

I am wondering... Do any of you others on the list have this problem?

I can't remember it ever being mentioned here before... Where you

can't lay down on your back and lay your legs down on the mattress,

because when you do, your SI joints slide and lock up with nerves

trapped, giving you bad pain in the area and also down the leg? (if

that is what really happens, it does feel like it is) As so many of

us, I have problems laying on my side too, so that is not an option.

When it happens I have a real hard time even moving an inch. I most

often have to force myself to get hold of the side of the bed and

pull myself over so I can slide off the bed and onto the floor and

then " do my thing " where I get it back in.

I don't walk much anymore, but sometimes I have to use a pair of

crutches to get into some building, e.g. my GP 's office (no

elevator, that flight of stairs is LONG). I often get quite bad pain

also in the SI joints walking the few steps to and from the stairs,

making it really hard to move forward. Luckily it is not far, I

always have my car outside the door...

Have any of you had your SI joints fused??? Or had ligaments and such

tightened around your SI joints?

Thanks a lot!!!! I really, really appreciate it!!!

Aase Marit

>In a message dated 2/17/04 9:55:19 AM Eastern Standard Time,

>aase.m@... writes:

>

><< Didn't I meet you in Winston-Salem? I think I did...

> >>

>

>We sure did!!!! I've been following your emails. Glad to see you back on

>the list!

>

>The hotel is really beautiful....I can't rememebr what kind of outdoor

>accomodations are available. At the time we looked at so many

>hotels to eb sure we

>had the right one.....things are kind of running together. I am really

>excited too!

>

>There will be an orthopaedic surgeon, but he specializes in shoulders and is

>coming from a hospital in New York City where they only do orthopaedic surgery

>and treat arthritic conditions. there will also be a neuro-opthomologist,

>but I am not sure how much he does with the spine. I believe he deals mostly

>with brain issues. But you still might be able to ask him something. I did

>contact a Spine Center here in our area and was hoping they would

>offer to do a

>presentation as they treat many of us here with EDs and spine issues, but it

>did not work out. I am going to send registration info anyway to their office

>and see what happens.

>

>You know who you might ask.....we will have a panel discussion with Dr.

>Lavallee and Dr. Kumar at the conference. Both these physicians

>treat an unusually

>high number of EDS patients. As you may already know, Dr. Mark Lavallee has

>EDS himself, and Dr. Kumar is the expert here in our area and treats approx.

>20-25 patients with EDS. He is the medical advisor for our local group and a

>wonderful doctor and person. All of us in my family love him. When

>I was sick

>he would stay at the hospital ICU in mornings, go do his office hours and

>then come back in the evening......he went to bat for me and here I am, still

>here, still surviving. So while neither could give you a " surgical " consult,

>either one can probably point you in the right direction.

>

>Hope this helps, and can't wait to see you.

>

>Hugs,

>Sue Ginley

>

>

>To learn more about EDS, visit our website: http://www.ceda.ca

>

>