United Brachial Plexus Network, Inc.

We are going to TCH in June for a CAT Scan, an EMG, a clinic visit and maybe an axillary nerve decompression. They need to see what the CAT scan and EMG turn up first before they make a decision about surgery. I was told that if there is not enough power to the bicep, they will do an axillary decompression and possibly another graft from the intercostal nerves and worse case scenario, take nerves from the unaffected arm and bring them over (it would work like an extention cord). From what I understand this is known as the C7 transfer. My child had primary surgery at 6 months of age. We are now 18 months post primary and still have very little movement in the hand because T1 was partially avulsed. My child has a total plexus injury and everything from C5 down to T1 is either ruptured, partially avulsed, or totally avulsed. We have none that were just stetched. I know that they want to do this to give my child more function, because we can do muscle transfers all day and if there is no electricity to fire the muscles, they will not work; I get all that, I am just nervous and I have personally never heard of anyone going back for more nerve work, although there HAS to be other kids that have had to deal with this. Any imput would be appreciated. I trust the team at TCH and I know that they have the best interest at heart for my child. I have heard differing opinions about them, but for my child I believe that they are our best shot. I just need some advice from Mom's who have been through this. Also, of the kids that have had to have this done, how did they handle the immobilizer as older toddlers? I know I may be jumping the gun a bit here, we don't know anything until we get the test results back, but I have to be prepared mentally for the worst case scenario before I get on that plane. Thanks for letting me vent, I hope that someone has some sound advice. I truly would appreciate any feedback. We are trying to give our son a quality life with lessened pain and more use of his affected limb and hand. Thank you.

any ideas on gathering info would be apreciated.
thanks

We are big supporters of TCH, and especially Dr. Nath. They have been nothing but fantastic to us. They have given our daughter so much.

Hannah also had the primary at 6 months, and MQ at 11 months. Thankfully, we have had a significant recovery. Although, Hannah's injury was not a severe as your child's. I recall in our first clinic seeing a teenage girl and couldn't imagine she had a BPI. She had a remarkable recovery. Lisa Davis confirmed she was a patient and that she had had an intercostal nerve transfer to her bicep. I couldn't believe how well this girl looked and moved. Lisa mentioned that her only problem was that she couldn't hold her breath and move her bicep at the same time. So swimming was difficult. It was because the intercostal nerves control breathing. So if that nerve wasn't firing, the bicep would work. I just found that very interesting.

I know that doesn't answer your questions directly. I just wanted to say that they do perform the transfer surgery regulary and have had great success with it.

Good Luck!

thanks for the replies. We will be there for the tests on June 21. Clint, thanks so much for sharing that story. Up until now, the decisions have been easy, and the decision to operate is not a difficult one, simply because of the severity of my childs injury. With out surgery, my child will be crippled. Period. That sounds harsh, but it is true. I just want to know all that I can so that I can help my baby now and in the future. Thank you for your comments, both of you.

Null, I know of someone that had a c-7 transfer. She also had problems finding someone who's child had the same procedure done but it is such a rarely done procedure, I think that the last I heard only about 50 done so far and yes it is very high risk. Email me at p_aldaco@sbcglobal.net and I can put you in touch with this mom if you would like. Or you can call me at 620-275-8439.

Hello! I want to just tell you my experience. My son is 2 years and 7 months old now, and he also had a complete plexus injury. C5 and C6 were ruptured and C7&8 and T1 were avulsed. He had primary at 5 months at TCH mod quad at 11 months and we just had caps at 27 months. He did not get any finger movement for about a year and a half after primary surgery. He has had movement for about 6 months. He can close his hand really well, but still can't open it. He can finally hold things in it for a short period of time. He can hold like a small bag of chips or a cookie or anything small like that. He is getting stronger and stronger everyday. He still can't extend his fingers except his pointer finger. TCH mentioned to me about the same thing you were talking about when we went to TCH the second time, but when they did the electrical stimulation to the nerves for his hand, they worked and they said it would take some more time for the hand to start working, and that's all it took. Right now we are still working on getting him to use his bicep. We just went and did some botox about 5 weeks ago in his tricep. We got some movement but still need alot of work. We just have to get stronger there too. I wouldn't worry to much because you probably just need more time, and you also have to remember you're going to the best place you could go. No matter what happens it will be the right thing. Dr. Nath will not do anything that doesn't need to be done. Good luck and God Bless. I hope this helps you some. By the way, my son did great with every surgery and didn't really need much pain medicine the last 2 surgeries.


Dawn
Mother of Jett