United Brachial Plexus Network, Inc.

Hi Kath thank you for the update.
I'm glad you were able to talk with a doctor who was honest and up front about
not having prior experience with BP surgery.
That being said from what I understand I think a second opinion might be in order?
In the meantime the use of a fully supportive brace would not hurt.
For 20-30 bucks it would at least give your arm/shoulder an opportunity to rest.
I dunno that's just my opinion and we all know about opinions...
Heck if I could I'd go to everyone and hold y'alls arms myself.
It pains me more and more to see our legions growing almost on a daily basis.
My best to you,
Scott
Ps I'll email you photos of the two braces I use?

Hey Scott
I know this might sound ignorant but I think this doctor has the most knowledge of BPI; he's across the hall from Dr Spinner, Bishop and Shin. He did say that he has seen many BPI patients but none return. He's very informative and knowledgeable of BPI's. To be honest if I went to another hosp I don't think I'd have the confidence with them that I have in this doctor. He did say he concurs with the "team" when he does see a BPI patient. He also went on to say that the surgery for a shoulder fusion has never changed; its is the same procedure they have been doing since the very first one was preformed. Maybe the technique has changed and the equipment used but not the actual procedure. I have been going to Mayo for 20 years; I wouldn't even know where to find another doctor that has done a fusion on a BI patient if Mayo has not.
With that said, I do thank you for your concern and I appreciate your advice (all the time).
That would be great if you could send photos! My e-mail is Herff94@yahoo.com.
Thanks for caring-I really mean that.
Kath

Hello. I believe we are going through similar situations, albeit my injuries are newer. The Triad (that's what I call bishop, spinner, and shin) were really pushing for a shoulder fusion, though they left out the part about an external metal rod What the heck though, I had an external pelvic fixator for 7 weeks, why not add on? I was fortunate that one of them also recommended a shoulder expert, Dr.Elhassan. He's positive a tendon transfer combined with muscle transfer will work but there is no guarantee and if it fails I will have to fuse. Make sure this is covered! I don't know if your dr considered it (and of course there's a good chance that he has) but it never hurts to ask. The Triad was convinced that only fusion would work and an hour later I had a surgery date for a much more hopeful option. Please let me know how things turn out

Please please let me know what you guys do regarding your fusion. I am becoming more and more tempted to proceed with it. I'm just scared and dreading waking up in really bad pain again. I'm so tired of hurting as is though that sometimes I wonder why not go for it. I hate to sound flippant about it but seriously, I am at a low now that I haven't been in since this happened only 6 months ago. My heart bleeds for the many of you who have suffered so much longer than me and yet I'm already wimpering out. Pitiful! I long for my days before this injury and I know I shouldn't look back...why? I literally even stare at audiences in talk shows as they applaud and wish I could even do that and be happy and painfree again. Sometimes I really feel suicidal with this pain issue but yet don't have the guts and know better days are ahead. Then too, I hope for some sort of cure. Just venting.... please please let me know about your fusion should you proceed. Thanks for everything to everyone on this site. Suzanne Sommer

Hey,don't be so hard on yourself. It's okay to feel bad. Like you my wounds are still relatively new and it's HARD! Most of the things I love to do and excel at, that define me are are incredibly difficult or impossible to do, I suppose it's a loss of self that I greive. Also the pain from a seriously sublexed shouldar is the worst of all my pains (and that's a lot) Even my hair brushing the skin hurts and I try not to let people touch me because they invatiably pat me or whack me on the bad shouldar. I've found I get really angry when I see other people abuse their perfectly whole bodies. I always makes me think, "Wanna Trade?"
I didn't want my shouldar fused but tht triad was really pushing for it and you get to a point where anything sounds better than a this. I was fortunate to see a shoulder expert (Dr.Elhassan) and he feels a tendon transfer will work instead. just rember a fusion is the last resort and can still be done if other options fail. Whatever you do, hang in there. You're tougher than you think

Suzanne
I know exactly how you feel and its normal to feel like you are whimpering out. For someone to say that they never felt that way is full of of crap. And I can say it comes and goes. There are days that I feel so down and sorry for myself (and I have been injured for 20+ yrs!) but for the most part I'm really lucky to be here. Everything happens for a reason; we may never know why but it does.
I get mad that I can't throw my kids in the air, or teach them to dive in to a pool. I can't hang a picture or do a cart wheel. but I can still hold my children, kiss them and watch them grow.
I think you and I should meet with the doctor Angela mentioned. The doctor at Mayo that does tendon transfer. That HAS to be easier than to go through a fusion.
I honestly think you'd be a different person if your shoulder was back in place and some pain is gone.
I'm a stay at home mom and I can always be reached if you want to talk. 815-728-9326; call me any time. We could even schedule appts. at the same time at Mayo and meet up!
Summers coming and that always makes me feel better!
Kath

Hello, thought I would put up more information about The doctor I saw. What I liked is that he has a lot of experience with shoulder and tendon reconstruction with BP injuries. Of course there's no gurantee's (but are there any in life?), but maybe he can offer a better option. I'm fully prepared to fuse my shoulder later on if the tendon/muscle transfer fails, but I pray that it won't. I do have to keep myself prepared that it's a possibiliy. I've found I have to keep hope at a medium level to keep going. Too little and why bother and too much and I will undoubtadely be disappointed with the results as they are never movie-like amazing. I am sick of hospital stays though.
I did find that for the nerve pain (including from the sublexatin), Neurontin(gabepentin)is the only drug that has helped, though it didn't seem to work as well until I was off all the other painkillers(oxy.) My doctor also recommended Cymbalta as it treats both depression and nerve pain, though I have never tried it)
Anyways, it's just so nice to be able to communicate with others like me. I feel so isolated from the world while I recover, especially because it's winter. Stay strong ladies and here's the doc's info:

Dr.Bassem T. Elhassan
With Mayo Clinic in Minnesota
Minnesota

Department
Orthopedic Surgery

Medical Training
American University of Beirut, Beirut, Lebanon

Internship
American University of Beirut, Beirut, Lebanon

University of Illinois, Chicago, IL

Residency
General Surgery, American University of Beirut, Beirut, Lebanon

Orthopedics, University of Illinois, Chicago, IL

Fellowship
Shoulder and Elbow Fellowship, Harvard University, Boston, MA

Hand Fellowship, Mayo Clinic, Rochester, MN

Academic Rank
Assistant Professor of Orthopedics

Interests
Tendon transfer and shoulder reconstruction after brachial plexus injury, hand, wrist and forearm reconstruction, congenital hand disorder.

Publications
See a listing of publications on PubMed, a service of the National Library of medicine.


Medical Services
Learn about treatment of diseases and becoming a patient. Read more about medical services.

Hi Angela
Thanks for all of your information. I did look up the doctor you spoke of before. I have seen Steinmann; he is across the hall from Bishop, Spinner and Shin.
This is his information:
http://www.mayoclinic.org/bio/10772782.html
He is doctor that would do your shoulder fusion.
I have been a patient at Mayo clinic since 1987. I had 6 surgeries in the past 2 years at Sty Mary with Dr C Johnson; http://www.mayoclinic.org/bio/10440542.html
That's another story............................
Not only do I have a subluxed shoulder but my arm bone has fallen forward so I have a round ball like bone sticking out in front. I believe Suzanne has the same thing. That is recent for me, not the subluxtion, but the arm bone.
I did try Neuontin. I am so happy its working for you but it did not work for me. The side effects were, for me, horrible. At this time I do not treat the pain. Winters are worse. But summer is coming and I am looking forward to that!!!
Were in MN do you live? I have travel over 20x just in the past 2 years; I wonder if we drive past your town???
Thanks for your support and I am here for anyone that needs a boost or just to vent to. I think I've been through it all; I hope!
When do you go back? Are you scheduled for the surgery??? Let me know. I think my injury may be too old for a tendon transfer.
Kath

As I put in a different post, when am I not at mayo?:) I go there 9, 12 and 18 (surgery day)this month and just got mailed another appointment date that we're trying to change. (I have so many injuries in different areas I keep recieving "mystery appoints" that are followups from doctors I don't remember seeing because I only met there Trauma Services once at the beginning. I also will go in hopefully in april to get my knee repaired. Can't wait for that one as it's very hard when your only free hand is occupied with a forearm crutch and I need to be pushed in a wheel chair. It's like I had the trauma version of a stroke. Maybe we'll run into one another.
I am fortunate that I live in Owatonna which is only about 45 min. away from Rochester.
My whole arm falls down and a little foreward. Even when the doctor pushes it up and back it still doesn't push completely into the right position. The skin is also terribly thin and stretched in the gap between my arm and shouldar and the surgical wounds refuse to heal. They think the bones are rubbing the skin underneath. Have you had this problem? I'll need a minor skin graft when they do the surgery. I just want to know where the skin is coming from as the top skin of the left leg was already donated to the right leg.
I read an earlier post of yours, and even though it's been so many years since your accident I am sorry about you and your then boyfriend. As I put in an earlier post, I was in a motorcycle accident with my dad, and though he survived, to say it's been difficult is an understatement.

Angela
I read your story as well of how you were injured. What an amazing story. Although I hate motorcycles I have to say your dad is a hero!
You sound so up beat and you have so many injuries and other stuff going on other than your BPI. How do you do it??? How old are you? You must be young to have all of your energy!
My skin is VERY thin on my shoulder and its been cut, at least, 12 times if not more! One spot looks like a bone is about to come through. My doctor did say at one point he could no longer open me in that one area anymore or they would have to do skin grafts.
I have an appt w/ Dr. Elhassan on April 8th. There was no way I could get away earlier. Its a crazy month here with my children and spring break is coming up. Mayo said he reviewed my file, spoke w/ Dr Steinmann and he wants to see me. I guess my injury is not too old. He doesn't want to say for sure that I would be a good candidate until he sees me.
Keep me posted on you! And Suzanne, call this doctor too and get an appt. We need to seek out all of our options before we settle on something like the fusion.
Take care you two!
Kath