United Brachial Plexus Network, Inc.

Hey Angela

Hope your meeting at Mayo went well. I had a chance to meet Dr. Elhassan when I was there. Seems really knowledgeable. Dr's Bishop and Shin think his technique to use some of my back muscles to help with my subluxation and gain exterior rotation is my best shot. I realize it's another major surgery and just had a couple other questions for you. I know your accident left you with a lot of injuries and your body took a "beat down." This surgery didn't seem like a walk in the park. How is your body handling the transfers and the complications that followed? I know you said it is rare what happened to your leg and foot after but it seems pretty intense! I'm wondering how your back is doing? Do you feel any weakness in your back from the transfers and is your stability compromised? How is your scapula doing? Any pain from the lose of muscle support there? Other than having the problem with your leg and correcting the issue with the brace are you experiencing any other side effects? I know you have a lot on your plate and I really appreciate your help. I just have not connected with anybody that has had this surgery. I hope your body is healing well and the road to recovery is getting brighter! Take care and thanks again for your input.

Mike

Hi mike. I understand. It's so nice to have some support from someone who's been through the same thing. To answer your questions, yes this is a major surgery that really takes about a two month commitment in a brace (6 weeks for healing, two weeks to slowly bring the arm down to stretch the tendon). A fusion, though, would still be much more intense.
That said, for me this surgery was remarkably easy on my body. The hardest thing for me to deal with has been my leg. I think it was such a relief for my body to have its shouldar back in the right position that the pain from surgery was minimal.
My back muscles so far don't feel any different and when I shrug my shoulder it just feels tighter than my other shouldar. I can't wait to get out of the brace. Before this surgery my arm was hanging about three inches out of the socket and hurt terribly. I couldn't live with it as it was and a fusion seemed like my only choice. I feel so lucky to have met Dr.Elhassan. He's an incredible doctor and a very kind person (and I've dealt with a lot of doctors in the last 9 months).
I hope this helped and will try to answer any questions that you have.

Hey Angela! Thanks again for all your help. I went ahead and pulled the trigger on my surgery date. June 25, Dr. Elhassan and I are getting real familiar at St. Mary's Hosp. in Rochester. Still a little freaked out but I had to "call the ball" and just do it.. This operation seems more logical than a fusion or just letting the arm hang there for the rest of my life. I've been working with his assistant Mike who seems real cool. He said they figured out the whole padding issue and have not seen any problems like yours with the leg. How is your leg doing? Hope sensation and movement is back to 100 percent! I also hope your out of that brace. Sounds mean. I'm psyched your back is not hurting that much and it must feel good on the body to have that shoulder set in the socket. Curious to know what happened with the minimal surgery you had to correct the brace after the operation? Did that keep you longer in the brace? How were you sleeping with that contraption? Can't quite figure that out.
Like you my arm has been hanging out of the socket about three inches for about a year. I'm over it. I hope to have it set well in the socket and in time gain some external rotation with my arm through this surgery and my gracilis transfer back in Sep. I really appreciate all your help, it has been a huge bonus for me talking to someone who has been through this surgery. If you have any other feedback please let me know. I hope you are recovering well from all your injuries. My accident also left me with a variety of injuries and I know how worn down we all get from surgery to surgery. I am not sure if your doing any P.T. with the shoulder yet but I'd love to know how the movement is coming along. Take care of yourself. --Mike

Congrats on "taking the plunge". You have to tell Dr.Elhassan that I (Angela Wanberg) sent you. He'll get the joke.
Surgery is always nerve wracking but just making a decision puts one's mind at ease. I felt the same as you. A fusion is a last resort but a hanging arm sucks.
Thank you for your concern too it means a lot. My foot works fine but it still aches and burns. It improves about every two weeks. Guess I just got lucky.
I just got the go ahead today to take the brace off as long as I keep my arm supported by pillows. Whew! I'm free! The minor surgery to fix my shoulder probably added an extra week in a brace. He's actually had me in two other models but the first brace was the most comfortable. I believe he's been able to have that modified so no one else will have the same problem. Just don't opt for a cast! It's pretty hideous!
I sleep with a lot of pillows. If you have a recliner that will help during the day. I always try to support my arm with pillows to take pressure off my body.
I think you will be amazed at just how good your shoulder will look. Like a real shoulder again. Right now I'm supposed to practice shrugging which is easy. I couldn't do that before. The lack of pain is pretty nice too.
It makes me feel good to know I have been of some help. I gotta do something while I sit around and heal. I too am getting very tired of surgeries. I keep saying I f I could have hurt just one less area. I've think I've been to the OR over 20x now. Hopefully in June I can get my knee repaired so I can start walking normally.
Can I ask how you got hurt? Are the other injured areas recovered.
Stay Tough. Ang

Ang- Great news about the brace! Must feel awesome to have that thing off today. I just recently got out of a brace on my other arm that I'd been in for 7 weeks. Not as extreme but still a pain to deal with. That feeling of being free is priceless! The brace that you have been in seems like the "UFC" of braces, not real psyched to enter that ring. I have no desire to get casted again. Been down that road after my muscle transfer and not only was it hideous, but it weighted a ton!
You must have the "Resilience Gene" in you. Basically, it sounds like your someone who just bounces back from life's adversities. 20x to the OR. Damn! Amazing that even after the "beat down" the accidents put on us, we still come back for more with our surgeries. Crazy. I am glad your foot is getting better, aches and burns must suck but once you get that knee repaired walking will be a lot easier without a numb foot!
I use to live in Lake Tahoe, Ca. on the North Shore in Squaw Valley. In April '08 I was back-country skiing with a friend on Donner Summit, a famous place in Tahoe away from the resorts. Decided to ski a line that was pretty technical which required maneuvering some exposed cliff bans. Once I entered and made a few turns, I heard a crack at that was it. Lights out! I got caught in a fairly large avalanche that swept me over the cliffs and took me for a ride. I woke up a week later in a Hosp. in Reno, NV. where I stayed for another month. I tore both arms out of the socket, broke 12 ribs/collar bone/humerous bone, punctured a lung, fractured my neck, and destroyed my ACL repair in my knee that I had done a year ago. F%$K! My right arm suffered the TBPI. C-5 through T-1 were totally avulsed and I had the gracilis muscle transfer with the intercoastal nerves to get some elbow flexion. In Feb. I had my other shoulder repaired which required rotator cuff repair, a bone graph to fix my Hills-sach-lesion, labral tendon repair, and a good cleaning up of my socket joint. I wore a "Halo" for about 3 months but my neck still feels a little weird. Not much I can do about the ribs and I have not begun to address my knee again. This surgery in June has my full attention. Just want that arm back where it belongs! You can appreciate that.
So that's my story. Now I'm in VA. with the folks.
Oh Boy! This injury is devastating but it is nice to reach out to people like you and get answers to the questions we all face! Thanks again. If your still chill'in in the recliner have someone grab you a book called "The Survivors Club" by Ben Sherwood. Its a good read! Gonna buy a bunch of pillows and get ready to rumble. Hope your staying strong and heal up quick!

Geez, an avalanche. Talk about "one in a million". how old are you? Must have been very rough to have to move to another state to live with your parents. I have to live with mine too right now and while I love them and am thankful, I can't wait to be on my own again.
Thank goodness you didn't damage the bp nerve on both arms. I think I might have preferred to wear the halo. I had to wear an extremely ill fitting neck brace for two months and it sucked. My neck still cracks when I turn to the right. Got you beat on hospital stay. I was there for three months (two in icu and one in rehab).
Has your knee been fixed? I've had to wait to have my knee repaired until the leg bones are fully healed. As I'm sure you know, it's very difficult to get around with a paralyzed arm and a bad leg.
Are you happy with the gracilis muscle transfer? Dr.Elhassan said he could use my pec muscle to fix my bicep but I am not sure how much more surgery I can do this year (getting a little worn out)
Don't know if you got my email reply. Sorry I missed ya. I havn't been able to use the computer much so I use my phone for internet so I havn't checked my email much. Let me know when you're up for surgery and your last name and I'll try to come visit ya. I might even be having surgery myself hopefully to fix my knee.
Take care, ang

hey Angela and all the others asking about this surgery~~~
I am a product of the wonderful work of Dr Elhassan. As you know, Angela, I will be in week 4 of this lovely cage, as you called it, hee hee. I too had the same surgery as Angela. I'm in week 3 and I feel pretty good. I just want to shower so bad. Dr Spinner wanted to fuse it and never even told me about Dr Elhassan! And they are across the hall from each other, in other words Angela was my life saver. Hanging for 21+ years starts to become unbearable. My shoulder looks great and I can flex my muscles already and I love to do checks on that throughout the day.
See you at Mayo on the 18th, Angela.
Good luck to all of you that go to Dr Elhassan. We are all very blessed to have found him. He is the best doctor I have ever had with this injury after 21+ yrs of dealing with this!
Kath

Three months? Ya, you got me beat! It is a challenge with the parents, isn't it? Love'em but need some independence back Huh! My neck still cracks and my spine is still tweaked but I'm more worried about my arms right now. I have not dealt with my knee yet. Just trying to get this right arm and shoulder under control. Like you said, can't deal with too many more surgeries. I can't imagine your situation with the arm being paralyzed and your leg busted up. Tough! I have not really seen the true function of the gracilis muscle transfer yet. It has taken about 8 months for the intercoastal nerves from my chest to work their way to the muscle. I'm slowly seeing some movement but nothing big. Bishop and Shin said it could take another 6 months, so that is why I'm having Elhassan do my shoulder now. I figure both could heal over time together. Not sure what to do about the hand, for now its just hang'in! It is a rough surgery so knowing what you've been through I'd give your body a rest before tackling a muscle transfer, esp. if your getting your knee done soon. I'm going to drop you an e-mail and let you know when I'm rolling back to Gotham. Hope the shoulder is feeling strong!
Take care of yourself-
Mike

there is a proceedure where they pull the latisimus dorsy over you shoulder down to you hand and there is a possibility to get some hand function from that depending on different circumstances of injury.

so ive been told maybe ask the question