Re: ReHELP! need shoulder advice from ..... I heard 'ya

[Guest guest]

Hi Judy

Yes, it's me, ........... Got your " message " !! I'm sorry to hear about

your husband, but thrilled to know that all went well & that he'll be home

soon. You were due for a break!!

As far as shoulders. I don't have great news. I, as you know, am in a mess

with mostly the Right shoulder, but the left is no bargain.

I have done a lot, I mean a lot of research, especially since my fall in

Bufallo ( Gosh, I detest that Hyatt!!!!) And, I've come to the understanding

that:

Shoulder replacments have a very, very poor rate of success. There are few

Docs that do it. If you find someone that says yes to it. Ask them how many

they've done, what their success rate has been & if they have any pateints that

might be willing to talk to you about their experience. I haven't had any

luck with this & would love to know if you find out anything better than I did.

Dont' be confused by the word pseudo. I would guess you're shoulder just

isn't sitting properly in the socket & I would bet at least a nickle that after

all the instability, that probably had a lot to do with the amount of arthritis

you have, that more then likely, you don't have great soft tissue & that

inlcudes your rotator cuffs, to hold it tightly in the socket. I know I don't

have much of anything left, which is why we really had to pretty much abandon

the

idea of a replacment. My only option is a fusion. And even that is iffy. I

am still checking it out, but please stay in touch with me & let me know what

happens. Also, I don't want to start trouble, but why do you have to wait 2

months for an MRI? Or do you want to? If it's your insurance or the MRI

place, get on the phone & talk to every supervisor & their supervisor. And cry

if

you have to!!!! Just get it done! I don't know about you, but I hate the

waiting. Please be in touch. Again, I'm glad your husband is doing well & let

me know how you do with your shoudler. I am sitting on mine for a while. I

am going to wait for a few reasons. I want to be very, very sure before doing

anything. I also have my ankle fusion scheduled for Sept. 30th & I'm going to

have to give that at least 3 months, at a very minimum.

I look forward to hearing anything & everything you find you. Be in touch,

Luv Ya lots,

In a message dated 8/30/2004 8:39:58 PM Eastern Daylight Time,

looselinks@... writes:

What a really crappy day! My DH who had his third heart attack on

Friday,and has been in CCU until today was transferred to the hospital

across the street for a cath scan and either angioplasty or bypass. We

wouldn\'t know until he had the cath scan.

At the same time, I has an appointment with the shoulder ortho at the same

hospital that I waited a month to get. My left shoulder has been so

painful, I can\'t use my arm and can\'t sleep at night. Of course, he was

running late, so I told the nurse I was going to check on my husband so I

could see him before he had surgery. She told me to come back in 1/2 hour.

I went from the Dr. office to the admissions office only to find out they

didn\'t have him listed. So I figured they would transport him by ambulance

thru the ER and started walkeing to the ER. Sure enough, I found him on a

stretcher in the hallway. I took care of his admission and by that time had

to go back to the Dr\'s office. I left him in the holding room and was told

he was scheduled for 1 p.m.

By this time it was 11 am. I got back to the Dr. office and was told I

would be seen shortly. Bu 12 p.m. I was boiling and as I was leaving, the

nurse called me into the office. I had already explained my predicament,

but since I was gone for that half hour, they moved 2 patients ahead of me.

I had the x rays taken and the ortho came in to tell me that the arthritis

was so bad that I needed a joint replacement. However he could only do a

joint replacement if the rotator cuff was intact. He seemed to think it

might not be, so I have to go for my 3 MRI in 2 months.

He also told me that I had a permanent pseudo dislocation. Does anyone know

what that means? He showed me the x-ray and I could see that the ball was

not all the way in the joint. The arthritis had closed the space between

the ball and the socket. Where there is supposed to be a 5 mm space, there

was no space at all.

I am very concerned about having a shoulder joint replacement. Any of you

(?) have that? What happens if the rotator cuff is torn (I suspect it

is only very stretchy) Can that be repaired. OF course, I have full

mobility according to the charts, but for me it is extremely limited. Where

I used to be able to put my arm around mt back to touch my shoulder, it only

reaches my bra strap. I can lift my arm straiht up but with extreme pain.

I told him anyone else would have a frozen shoulder at this point.

I brought all my EDS material for him and he did read some of it. I told

him about the rest. But I know he really doesn\'t understand how difficult

surgery is with HEDS!

In the meantime , he said he would give me a steroid shot to try and help

the pain and disappeared. Now it is 12:40 and I wanted to get back to my

husband. I left my room and went into another patient\'s room where he was

shooting the breeze and told him that if I didn\'t get the shot right now, I

was leaving because I wanted to be with my husband before surgery. He was

properly apologetic and did give me the shot immediately which, of course,

didn\'t help at all.

I got back to Stan just as they were wheeling him away. He had i artery

that was blocked 90% so after the cath scan he had an immediate angioplasty.

By 3 p.m he was in his room and by 5, he was up and walking around!!!

Unberlieveable! He will be home Wed. Friday, he was at death\'s door and

Monday ready to go home.

So , if any of you have any info on shoulder problems, replacements, pseudo

subluxation etc, please let me know.

Thanks,

Judy/Atlanta

Ehlers Danlos Syndrome - It's a Way of Life