United Brachial Plexus Network, Inc.

Hello fellow TBPI
I know this has been a topic on the boards before but I want some "new" info on this. I was at Mayo Clinic yesterday and I had an MRI, CT scan and x-rays. I sat down with Dr Steinman, whom in the same hall way as Bishop, Spinner and Shin. I have, like most of us, anterior subluction. Mine has become rather painful over the years. He said it will not get worse but (and please read this with an open mind) with the shoulder fusion I could "look" better (putting my arm back up in the shoulder bone and putting it BACKWARD in place-I have a ball of bone sticking out in front) receive some pain relief, and I would actually get movement. I don't have much shoulder movement but doing this I'd use my scapula for moving my arm. Locking my shoulder in place will make my scapula more useful. This is a Mayo Clinic doctor that specializes in shoulders. He said he hates doing fusions but in my case, being a BPI, I would only benefit from it. The draw back, being locked in place BUT I can't lift my arm in front or away anyway. Its basically glued to my body anyway. It is a huge surgery.
Has anyone had a shoulder fusion for BPI reasons only? And if you have what is the extent of your injury? And if you decided against it WHY? I want all feed back.

Hanging here for 21+ years now..........
Kath

Hi there, yes I have considered the fusion as well. It looks so distorted (i'm sure as yours) with the ball hanging down and out front. My injury was in august of 08 so they first decided that they would do it in December, 3 months out, because the fusion would be permanent and they wanted to make sure I wasn't gonna get better before committing. Then the ortho who was to do the surgery talked to someone else and basically just excused himself from my whole case. My injury occurred when a cervical fusion went arry and I'm going to pursue a lawsuit of which I'm sure hes aware of. No one wants to get involved, you know. Let me know if you proceed with it. I'll be anxious to hear about the surgery and then more importantly, how it affects your pain level. Good luck to you in your decision. Again, please keep me posted on your status. Thanks so much. Suzanne Sommer

No one has had their shoulder fused??? After talking to the doctor I couldn't figure out why more people have not had it done. Fusion is a terrible word in doctors terms but for a BPI person is beneficial; as my doctor explained. I was really hoping I could find someone that has had it done. I am guessing, like me, people are questioning it or that no one has seeked a doctor that they felt comfortable with on their advice OR that no one has really seen a doctor for this??? Anyone????

I was hoping someone would come forward on this topic that has had an actual shoulder fusion.
My doctor did tell me that he sees patients but no one ever comes back. I guess if I am the first I'll report back to all of you.
I am going to take a break from the sight for awhile. After dealing w/ this injury for 21 years I am getting really depressed.
Good luck everyone, I pray you all get relief from pain and that you get back the most possible movement there is........................
Kath

Kath, Mel was contemplating a shoulder fusion before her nerve and muscle transfers, but after surgery her shoulder went back into place fairly well and it didn't look as bad as it did pre-op, so we decided against it. Even though she is not able to actively move her right shoulder she can do it passively and she hated to give that up. Shoulder pain really wasn't an issue either. She did, however, have her wrist and thumb fused so she wouldn't have a "floppy" wrist and they fused it so it looks more "natural" when resting at her side. I hope you get some answers from someone who has had a shoulder fusion done. I know how hard these decisions are. Sue

thank you, Sue. I asked the doctor from Mayo how many people with our injury that come back to have the surgery and he did say none.
I think its fear..........I completely understand that.

I am so undecided. I think I will do it but not right away. I have too many things going on right now and my youngest is only 3 years old and I don't want to miss anymore of his time at home with me.

I'll keep checking back to see if anyone comes forward.
Kath

hello, ik hope someone still reads this topic.
i have had my shoulder fused.
not because of brachial plexus injuries, but because of full dislocation of the shoulder.

me

AND????? I'm looking for feed back?

hello herff

well, the fusion is done 5 monthes ago.
a big operation, a nasty period with a %$#& cast!!
and now, i have fysiotherapie, to get some movement back. you can only move with the scapula, not with the shoulderjoint!! you don't have a joint anymore. that's is very tyring. the muscles and tendons around the scapula work very hard, and give a lot of problems at the moment. it hurts a lot.
this morning a special fysiotherapie has started and i hope these problems will be history soon!!
i live in europe, have been operated her as well.
hoe is your situation now?
bye bye, me

Thanks so much for sharing your experience. For a while it was almost a sure thing that I would have to have my shoulder fused. it was extra scary because there seemed to be no one who had gone through it who could share what it was like.anything you can share will help others in the future. I also wish you the best in your recovery and I hope your problems become a distant memory.