United Brachial Plexus Network, Inc.

My 26 year old son suffered a severe TBPI on Feb. 10 while snowmobiling. He has no feeling (except pain) or movement in his right arm from high up the shoulder down to his fingertips. He has an appointment at Mayo in Rochester on May 18-19. However, though he wears a sling 24/7, his arm seems to be slipping out of the shoulder socket...We have ordered him a new sling, but it is on backorder and won't be available for another week or two. What kind of sling is best? Also, what can we expect from the folks at Mayo? Thank you for helping me.

Dustin had a few different slings. There was one that had velcroe straps that could be used to gently pull the arm back into position. I'll have to look and see if I can find it to give you a name. It was ordered by his PT. As far as the Mayo, you can expect the most thurough exam he's ever had. Dustin first had an intake evaluation. They did a lot of checking on the arm. Then an EMG, this took between 1-2 hours. After that he had an MRI, I believe. It's been a long time but I think that was it. The next day he had the appt with the "team". They are very good and will give you their opinions. At that time Dustin was still seeing some improvement so we were scheduled to come back at closer to 6 mos post accident. The "team" took all the time we needed and answered all our questions. They again checked the arm and rated the muscle strength. I think he then saw their therapist so she could contact his pt and let her know anything different that Dustin should be doing or trying to do. I left there with a much better understanding of his injury. Also more peace-of-mind that the best was being done.
Sue

Thank you for the information Sue. We keep hoping that Luke will begin to feel something, but so far that hasn't happened. He has had an EMG, but the Dr. who gave him the test just kept repeating that "it is very serious" and said that Luke's Neurologist would talk with him about the results. After 10 days with no word, my son called to ask about the results...and was assured the Dr. would call him back. Two days later, a more frustrated Luke called again, and the receptionist gave the phone to a nurse who was instructed by the Dr. that he really couldn't help Luke and would refer him to Mayo...Luke never spoke to his neuologist about the EMG, which seems very wrong to me. Anyway, though he referred my son to Mayo on a Thursday, we found out that the hospital never sent his records...Luke called again and the whole mess just continued...What a fiasco, is all I can say about his treatment there. Now I'm ranting, so I'll stop. I just want to know that they will at least tell him the truth, whatever that may be, so that he can begin to deal with this devastating injury. Thanks again, Sue.

Alicia
I like the Joslin Ultimate Arm Sling. It is constructed of a stretchy material that moves with you. Go to joslinslings.com to check it out. I have been in a sling for almost three years and think I have tried them all! You can also get a Joslin sling from the PT Dept. at Mayo. I think you and your son will be amazed at the care and attention he will receive there. So many good things to say, I truly don't know where to begin! He is most fortunate to be going there so soon after his accident. It took me eight months to find my way there through the medical maze I found myself in. If you have any specific questions concerning Mayo, please repost or send me a message. I will help if I can. Good luck to you, your son and family....will keep you in my prayers.
Marlene

Here is a link to the sling we used to pull Dustin's arm back into the socket. All the velcroe straps are adjustable for up, back and forward movement. http://www.sammonspreston.com/app.aspx? ... t&id=76089
Yes, I understand your frustration, we had a similar situation with his neurologist. When he didn't get back to us with a test result we stopped by figuring he couldn't avoid us if we were there. Then he charged us an office visit. OMG, I was so mad, all he had to do was call. Basically he told us the injury was more than he could treat. Fortunately Dustin's physiatrist had mentioned "Brachial Plexus" and after landing here I requested a referral to Mayo. I think this was the best thing we could have done. The dr's there are specialists in this injury and will give it to you straight. The not knowing is the hardest. Is your son in therapy? Water is a great place for him because it takes out the gravity and he may be able to move his arm there when he can't on land. Dustin's arm was flail to begin with. Now it is what they call functional, but there's a big difference between functional and useful. It's also hard because nerves heal at a very slow rate so it can take months to see any change. I tried to devise things to help him move it without resistance in the beginning and then we would gradually add slight resistance. He now is able to move his arm, which is functional. But, because it takes all his strength just to move it it's not useful. Good Luck!!
Sue

http://www.sammonspreston.com/app.aspx? ... t&id=76124

Hi, this is the link for the sling my husband uses....he has complete brachial plexus avulsion that happened almost 9 years ago. I will say a prayer for your son. My husband was 25 when he wrecked his 4-wheeler into a cypress tree. He had the nerve graft surgery to hopefully restore the use of his upper arm...didn't work. Phantom pain is tough to deal with...no medicine to help. During this time we were married and now have a 6 yr old son and a set of twin girls that are almost 1 year old. My husband finished college and is an ag teacher and continues to do everything he did before his accident (EXCEPT RIDE A 4-WHEELER...OUT OF THE QUESTION! ) He fully compensated for the loss of his right arm very quickly. He has recently decided to amputate his arm. There isn't much that can be done for avulsed nerves...so he's tired of dealing with the "dead" arm. You have to find a doctor that you trust and that will listen to your son. Its been an emotional roller coaster. I hope the best for your family and pray that your son's injury isn't as severe.

Well, I'd like to thank all who have given us the much needed support and advice we've received here. Luke's appointments at Mayo went very well. Dr. Shin has said that he believes at least on root has been avulsed because Luke has Horner's Syndrome, but that the four others they can work with if they aren't avulsed too. The testing they did was extensive, and they are hopeful that Luke will have good funtion in the future. He is scheduled for surgery on July 2, with an Electromylogram on the 1st. They will do a Gracillis muscle transplant at the same time. Lots of cutting and scars, but Luke is hopeful to be able to flex his elbow and have some rotation in the shoulder. Grasping would be nice...and we are cautiously optimistic at this point. Oh yeah, we did get him a new sling, and it is the one made of a sort of neoprene sleeve with velco adjustments everywhere. He loves it! We have it adjusted to pull his shoulder back up into the socket. Anyway, thank you all for your kind thoughts and prayers! I'll keep you posted...

I just read your thread and the information concerning Luke. The Mayo and Dr. Shin are unbelievable. I will look for more information in the future. God bless you all - I just paused and prayed for Luke.

Jeff Jones

http://www.alimed.com/alimed/product/Ha ... 7835,0.htm

Alicia I hope you and Luke are fairing well. I know it's a helluva readjustment. Prayer, Patience and Pills will get you through to somewhere. Somewhere you never knew existed. Somewhere where time is a blessing and a curse. I celebrated four years Friday by myself with no one looking. Luke is going to go through some extraordinary experiences and others need to realize that what he is experiencing no body else can imagine. I do not wish to cloud things but it will get worse before it gets better. It is best to learn this up front. No sugar coating. I have primarily used a black Harris Sling(the VA supplies them) and I have used it extensively. I've worn them out actually. Probably 6 or 8 black and the same for the blue models. The velcro gives out on the black and the 'velcro-catch' area on the blue gives way. I had to have an 'H' type brace to displace the weight across my shoulders because of a neck injury on the opposite side of my TBPI. Any brace that goes over on one side only is going to cause undo stress on the point of contact on the neck or shoulder. There are plenty of braces to choose from and you'll be lucky if the first one is the best one. One of our ubpn contributors has developed and produced a pretty fantastic brace which will allow Luke freedom to play X games. His name is Dan Alderidge. Please contact him asap because summer is here and the sooner Luke experiences the freedom Dan's braces allow him the sooner Luke will have that freedom and the distraction. If Luke has a rough time with sleep, might i suggest a dose of 45mg Temazepam. He will lie still, flat on his back with his arm propped up on another pillow. If you can figure out how to see my profile you are more than welcome to call or even Luke can call if he'd like.
My shoulder had a cracked scapula and by itself my arm would just hang out of it's socket causing even more pain. You couldn't breath on my shoulder. After awhile(a year or two) my arm is back in it's place pretty much by itself. Lately I have been weaning myself out of my sling. It still hurts and my arm just hangs there but I am working on it and getting some shoulder and upper arm back. So there's hope. Only if I still have my arm. I was hoping stem cell would catch up. It hasn't and I can't wait.
Good luck and God bless you and Luke. I'm guessing he's pretty lucky to have somebody at his side through this.
Bless you Alicia.