United Brachial Plexus Network, Inc.

We are headed back to Mayo at the end of September and I'm just looking to do a little homework. A little background: My husband had a nerve transfer (branch of tricep to deltoid) in March 2008. In September 2008 we we returned to Mayo and the EMG showed the beginning of reinervation. We've seen definite improvements in terms of shoulder stabilization and some movement "without gravity", but no "real movement". I know that every situation is so different-but for people who have had the nerve transfer and subsequent procedures- what are some of the possibilities of what could come next? I think they mentioned a tendon transfer when we there last-does that sound right?
Who knows, not sure DH will want any more surgeries, the man has seriously figured out ways to get the job done- he's been chopping wood all summer, sweating and soldering pipes over his head last winter But I like learning a bit ahead of time. TIA

My own personal thoughts are,do not have any surgeries especially in the shoulder area if you see signs of rejeneration of the nerves. If you have surgery there is a good chance the cutting will seriously effect or destroy the nerves completely. Remember...These guy's (Doctors), get paid to cut! This is how they earn their living. Your man is doing everything he can to keep it all going. Bless him for that. He is doing his own physio/OT Therapy...that is the reality with all TBPI patients. Taking personal responsibility early is key, learning to know your body and how far you can take it...is an amazing healing journey. I have learned to be still with my injury and breathe through the pain and allow my own body to do it's good work.
Sounds like this man is amazing! Keep up the good work.
Wait a year and if the shoulder is still a major issue, wait and see then...

With Peace, Love & Light,
Mardelle

Hello. Isn't all this incredibly confusing?
With the shoulder it definately depends on the amount of damage done. The nerve docs sent me to Dr.Elhassan who works specifically to repair brachial plexus related injuries in the shoulder (as compared to a regular shoulder guy who would just fuse the shoulder in place)
So here's the two main procedures that can be done:

Tendon transfer - replaces the damaged tendons with new tendons. This might have been mentioned to you because if the tendons in your husbands shoulder were stretched badly and/or torn they have to be replaced to hold his shoulder in position. The nerve transfer won't fix that.

Muscle transfer: live, undamaged muscles around your shoulder (like lat muscle, or pec, etc.) are moved to replace dead/damaged muscle in order to restore shoulder function. This one he might have to decide if he wants to wait and see what time and therapy can do since he is seeing some reinervation. Docs can help with that

I strongly recommend you see Dr.Elhassan when you go to Mayo. From personal experience, the nerve docs are great but their specialty is in the nerve and arm aspect. They pushed very hard for a shoulder fusion because they thought it was too damaged but Dr.Elhassan felt he could fix it and now I have a shoulder that moves and is in the right spot.
I hope this helps clear the air a bit on the surgical options for his shoulder should he choose that route

Patience & Knowing your own body is also equally important. Not all solutions to healing are found in clinics or Dr's offices. One has to work very hard from within...
I personally had a very poor prognosis from my accident...I defied all odds and never listened to the negative or others comments...I allowed some room for divine wisdom to enter the healing space and was amazed at the results...this knowing coupled with Science and Natural Medicines can all work very well together.

I'm 17 and received a TRBPI in mid march of 2009. I too have gone to mayo, just returned today actually. I would recommend going by what the doctors at mayo say. although your body is capable of healing itself, some times it needs a little help. And the doctors at mayo especially arent getting paid to cut. They're getting paid to help. That is one thing I realized when I was there. They won't suggest somethign just to suggest it. They know what they're doign adn would never have you do something that isn't necessary.
But hearing that your husband is doing well is great news as i am schedualed for a nerve transplant myself on the 20th of september. Do you mind if i ask where they took the nerve from? I know they're planning on taking it from the back of my calve and was wondering if it is the same with most people. Also, how long was it for your husband to heal? i am starting college on teh 16th of august so this is all throwign a big wrench into everything.
I hope you get the help you need. Mayo is a great place,

Janet.

Janet-
My husband's tricep was still firing on all cylinders, so they took a branch of the nerve feeding it and "rewired it" to his deltoid. In terms of immediate recovery to get back to work, he recovered remarkably quickly. He had the surgery on a Friday afternoon and we were discharged Saturday morning to catch an 11am flight home. He was off all prescription painkillers by Friday night and just took OTC meds to get home. The flight was absolutely no fun, but we made it and he pretty much slept through the weekend and was back to work on Monday. That wasn't what they suggested, but he is miserable just sitting and I really think it was much better for his mental state to be back at work. The worst part was the immobilizer. I think he had to wear it for 3 weeks. It made bathing and sleeping difficult, but other than that, he dealt. Let me know if you have any other questions and best of luck on your surgery!
Amanda

Hey janet. Man, college and major surgery, not fair. Hope you're staying tough.
I agree with everything you say about the mayo docs. I've seen a lot of doctors and those nerve guys are great.
I had the nerve taken from my calf too. Be prepared for the outer side of your foot, heel and ankle to become permanatly numb. At first it feels like skin that's been in the snow too long, numb but a little painful. That will fade in a few months and then you will hardly notice it (though shaving feels weird).
Be prepared to wait quite a while to feel any results, like 3 months to a year or more. The nerves grow very slowly. It's been around 7 months since my nerve surgery and the docs say the nerves are just at that point where they have healed to the graph site and will start affecting the muscle. You are young so maybe your nerves will be faster
Hope this helps and good luck.

Hi...
Sorry if the 17 year old misunderstood the centre point of my comment so I will explain. I did not say the Dr's at the Mayo are not good or don't know their stuff...They are some of the most skilled in the world...
However, from knowing the journey, when a graph has been performed ...you must give it time to heal. Not everyone heals at the same rate, everyone is very different. No two TBPI are the same in the world...these are medical facts.
When giving advise...or recieving advise especially from Dr's...get several opinions...at least 3. Wait and weigh all the information.
These Dr's do get paid to cut into our bodies...they do it trying to help, no question about that either. Everyone TBPI or not needs to excercise their own power and wisdom in any medical decision what is best for the patient, not their family, friends or dr.s.

In terms of your impending surgery/school young lady...bravo to you...I hope it works out for you. But make no mistake about it, if they are harvesting from one leg or two nerves from your legs, mine were both, it makes a huge difference of recovery and I still cannot feel my two little toes. Shaving has to be performed always with great care years latter to avoid slicing the skin in the areas that are numb. My surgery was long, and my cut was from under my earlobe ,down my neck, all the way down under my arm pit to mid chest. Left Lung Intercoastal Nerve Graph. Not sure how they will perform yours. Dr's I am sure have perfected many graphs by now..I hope your goes smoothly and with a speedy recovery, your age will assist you greatly.

I think it will effect some school for sure.How much will depend on the type of person you are, the operation itself and the aftercare you will need. But the timeline in which you need to have this surgery is crutial. Could you take correspondance course at home maybe? This way you would take some pressure of yourself and be able to focus on your healing and physiotherapy/OT etc...
Just a thought...

All the Very Best & Good Luck!
With Peace, Love & Light
Mardelle

Me again...
I rechecked I did not see Janet's name when I first read the post...I addressed her as 17 yr. I thought that was her name...sorry about this...this is my brain injury having fun with me today.

just wondering, Mardelle, who are your doctors and where do you go? (hosp/clinic)

Kathleen
22 years of BPI (87)
C5,6 and 7 avulsed
39 yrs old
Chicago, IL