United Brachial Plexus Network, Inc.

hello everybody,
i hope my story can help someone who is in the same situation as i was, a year ago.
i had my doubts, but my doctor explained me so much about the operation. i HAD to undergo the fusion, my shoulder was fully dislocated for 6 months again!! i've had 5 operations before, to put my shoulder back in it socked, but they all failed. so, i had no options anymoren. you cannot live a normal life with a dislocated shoulder. the pain is too much.
don't underestimate the fusion operation is easy!! it's painful, the cast period is terrible, i was in a shoulder-abduction cast for 12 weeks!! sleeping is terrible, you cannot shower for 3 months, living through the day isn't easy.. but, i survived!! with a wonderful husband and daughter, friends and family, the help of my wonderful doctor, the people from the cast in hospital. the fysiotherapie will take months and months, but i will get there!! with a shoulderfusion you have to adjust the rest of your life!
if you want more information, let me know!!
i wish you all the best.
me

p.s. i hope my english is that good, so people do know what i mean to say!
excuse me for writing without capitals, but typing with one hand is difficult enough.


Message was edited by: me


Message was edited by: me


Message was edited by: me

Thanks again for being brave and sharing your story. I know it will help others. I had to have an external pelvic fixater for 2 months and I currently have to wear a huge arm/shouldar brace for 6 weeks so I completely understand how you felt. Glad you stayed strong and if you ever need to talk feel welcome

hello angela,
i'm sorry to read you have these problems, it's a hard time for you, i'm sure. external fixation is awful also.
what kind of brace do you wear? i still wear a brace during the day and after the 12 weeks cast, they made me a nightcast, that was removable. i wore that for 5 weeks. now i can sleep without, but i do have some extra pillows in my bed, i cannot get my arm against my body. i cannot lay down on the bad shoulder, than i will feel the screws.
after the cast period i had a frozen elbow. before the operation the elbow was perfectly healthy, but the long fixation period made the elbow frozen. maybe that was a bonus that came with the fusion?? hahaha..
after 5 weeks of fysiotherapie, the elbow better now. i still can't stretch the elbow completely.
i cannot eat yet with my bad arm, cannot reach my mouth yet. i learn every day at fysio.
we will go on holiday in june, i hope i can do that WITHOUT a brace.!! that will be the day!!
i do have things at my body, like cast and brace for 5 months in a row now!! and there's still no end to it eventhough i work very hard!!

angela, what has the doctor done to your shoulder?
do you have BPI?

i see we have a big time difference, so my respond will be hours later for you. here it's 20.30 P.M. now...
wish you a sunny day!!
bye bye, me..

Hello! Can I ask where you are from?
Yes, I was so happy when that dang fixater was out of my pelvis. Yup, I have bpi due to trauma in my right shouldar/arm. My last surgery I had a tendon/muscle transfer to fix my shoulder (instead of a shoulder fusion). I have a brace I call "the cage" as it wraps around my entire torso and then holds up my arm in a "waving position" in order to imobilize my shoulder. I have one more week of this! Yay! Then I think I get put in another brace that is less extreme to support my arm/shoulder for a month.
That's too bad about your elbow. You'd think by now they would find a way to immobilize your shoulder without sacrificing your whole arm. My elbow has frozen a little too due lack of use and keeping it in a brace all the time to support my shouldar before the surgery as it was permanantly dislocated. My arm is pretty useless though so it's not too big a deal. It sounds like you can use that arm so it must be so frustrating to have to fix it now when it eas perfectly fine.
Can I ask what was the cause of your shoulder problems?
I can promise you things will get better and easier. It just takes A LOT (I say too much) of time.
It was sunny here but now...some lovely thunderstorms. Hope your doing well
Ang

hello angela,

my shoulderproblem is just part of a big problem, i have a malfunction, a DNA problem, in the collagen tissue, almost all my joints do dislocate!! most of them, i can put back myself, kneecaps, thumbs, fingers, wrists, jaws etc.. but hips are nasty, they "just" subluxate, so they pop back itself. my shoulder has had multiple operations before, but none of them could keep the shoulder in place.
the other shoulder has had 4 operations as well. before the fusion operation, the shoulder was fully dislocated for more than 6 months!! the pain was killing me. i couldn't use the arm at all!!it was hanging like a "dead" piece next to my body. i was actually "looking forward" to a solution.!! no matter what solution!
my first luxation was when i was 5 years old. from that day on it was the story of my life, so many joints pop out!! untill today...

i'm sorry to read that you have had a trauma, that's the cause of your arm. i hope you can still manage to do the things you want.

your brace sounds awful!! good for you, only one more week to go!! hopefully not another brace!!
can you use you arm, maybe a little bit?
do you have children?

i see that you live in minnesota, where's that in America?
last year we've been 3 weeks in california, nevada and arizona... we've had a wonderful time there!!
we've seen so much, las vegas, grand canyon, los angeles, san diego etc..was a great holiday.

i'm so sorry for you, that no one from america respond to this topic. i've read a site on internet, where american people were dicussing a shoulder fusion.
there's also more info on english and american sites, than dutch sites..that helped me a lot to make a dicission.
i also found a person who had undergo the fusion 4 years ago. we wrote on a shoulderforum, for 7 years already.
i met him 3 months before my operation. he was a great help for me!! the doctor's talk is good info, but someone who has the fusion can tell you things no one else can tell!!

angela, have a wonderful weekend, hope you are doing fine.
bye bye from me.


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Hi me (that sounds funny). Hope you have better weather than over here. It's very gloomy and rainy.
Sorry you have had to deal with this for so long. You have had to be strong for a long time. Does this run in your family? Do the joints misbehave quite often or are allowed "a break"?
I felt the same way about my shoulder as you did. It was permanantly dislocated for about 8 months (since the accident) and even the surgeon who fixed my shouldar could not believe I was able to walk around with a shoulder like that. I was ready to do anything to have it fixed. I was actually in the process of scheduling a fusion when one of my nerve doctors found a doctor who could offer an alternative and voila.
I am currently recovering still from the accident and have several more surgeries to go. Loosing the use of one arm has been the most difficult thing to adjust to. The brace isn't as bad as it sounds. I think you would have preferred it to your cast as it would have allowed yoy to excercise your elbow. No (grins) I don't have any children which at this piont is for the best as I can barely take care of myself.
What is your homeland like? It must be beautiful.
You visited the warm part of the USA . Minnesota is in the upper central part of the USA. The northern border is with Canada and it is also connected to Lake Superior which is part of the Great Lakes. It's called the land of 10,000 lakes but those who live there call it the land of 10,000 mosquitos, hee hee.
Was wondering if you wanted to exchange emails. It's just easier to get to know someone that way and you seem like a neat person. .

hey angela,
that would be a great idea!! exchange mail...
and yes, i am a neat person!! hahahha
i have done my story here, if i only help 1 person, my mission would be done and i will be proud of that.
so, angela, i wrote me mailadresss here, so i can erase that later.

hope to hear from you soon angela!!
bye bye.. me..


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angela, where are you???
are you allright??

me..

Hey, I'm okay. Just had some semi-minor surgery but I'm doing fine. I emailed you right after you put up your address but it must not have reached you.
Hope you are doing well.

hello angela.
good to hear from you!! hope you are allright?? minor surgery?? what's that?
no, i havent'had mail from you!! have you checked my mailadress?
if this doesn't work, maybe you can give me your mail? i can try to reach you?

again, i hope you are doing well!
bye bye from me


Message was edited by: me