Hello all,

[Kianas Dad]

My daughter Kiana was involved in a MX accident on November 18th where she was diagnosed with an avulsed nerve at c-6 and damage to the rest of the brachial plexus. Since the time of the accident she has no movement, nor feeling on her right side, from neck to finger tip. We have yet to do a deep muscle test but we have done the other and she had no response at all in any arm nerves including the ulnar nerve. She had no response on an f wave test. It happened in Dallas and we were recommended to Dr Susan Mackinnon in Saint Louis.

Kiana is having extreme pain in the shoulder area and she said if feels like needles under her skin. It comes and goes. Pain medication is doing nothing for it. I read on here about different slings and will I speak with her therapist or surgeon about this asap. We were told only the nerve at c-6 was avulsed but she still has nothing as far as feeling or movement in any areas of the shoulder and arm. We were told they wanted to wait till February for the procedure. Is 3 months the typical wait time? Since it is 1 avulsed nerve does that mean the others have a chance of self repairing? I feel lost right now and scared for my little girl. Any help in regards to this pain would be helpful.

Her name is Kiana Clay and she just turned 12 years old. Please keep her in your thoughts and Prayers

Roger

[ptrefam]

Dustin's accident happened on Nov 2 of 2005. When we brought him home from the hospital Dec 24 he still had no movement. Although he had no avulsions. The EMG done in Jan or Feb showed severe abnormalities in most nerves. There were some he wasn't sure he found at all. Later he began by shrugging his shoulder. Yes this was the first exercise he could do. Some feeling returned slowly, though there are still areas that have very little feeling. They told us they like to do nerve transplant within 6 months. So, yes I believe that a 3 month wait is to see if anything is improving. Some of the problem may be caused by scarring or from the injury. It takes a long time to see improvement. They did tell us if the nerves were not avulsed and getting signals it was best to let them recover on their own. But, be sure to do ROM and see a therapist to keep things improving. Good luck, this is long and slow, and hard to keep spirits up. Not sure if I helped, but hope so. Dustin has no pain so I can't help you there.
Sue

[spinkydee]

Just wanted to reply back as I know you are eager for any information. No, an avulsed nerve cannot grow back. But she is fortunate that they expect the other nerves to return. Dr. Nath in Houston is a great resource. He did my son's surgery in March of 05. His website has a lot of information. If you email him, you will get an answer. I will keep your daughter in my thoughts and prayers. I know you would take her pain if you could. It's so difficult to see someone we love suffer and not be able to help. This is such a terrible injury. I have gotten good information and support from UBPN. These injuries are so unique and require the expertise of specialists. I actually had a top neurosurgeon from Barrows in Phoenix say he'd fly to Houston to see Dr. Nath if my son regained movement in his arm. You can be sure I'll take Sam down there to show him the results. Keep the faith and take good care of yourself. Michele

[admin]

please don't play the waiting game. Give the best in the country a call. The Mayo clinic in Minnesota have 3 surgeons that do an average of 3 of these a week. The head surgeon Dr. Bishop has been treating brachial plexus injuries for the past 19 years.

Your steps?
-get an EMG
-Call the Brachial Plexus clinic at The Mayo
-Fax them the EMG report
- The Dr's will look it over and you will get a call for an appointment.

I went there from NYC. I was in a motorcycle accident and wasn't able to move my shoulder or bicep. That pins and needles feeling your daughter feels was from my neck to my thumb.

My accident was July 10 2005, surgery Feb 10, 2006, able to bend my arm- Nov 2006.

Please, again, don't play the waiting game.

I'm not saying your daughter will definately need surgery cause I'm not a doctor. But let the best in the country see her.

[EllenB]

Hi Roger,

As a parent of a teenager who was injured four years ago, believe me I know what you're going through. I think as a parent, seeing John in debilitating pain was worse than the paralyzed arm. Things will get better but it's probably still hard for you to imagine that at this point. You're trying to become an expert in something you'd probably never heard of before, trying to figure out which surgeon to use, help Kiana deal with the pain & adjusting to the injury, etc.

If it helps, I can email you a pdf file of a couple articles published in Outreach (the magazine associated with this website) about 1 1/2 years ago - outlining our experiences with the injury as well as what was done for John at the Mayo Clinic. It might give you some ideas.

Regarding the pain, my main suggestion is for you to find a pain specialist if you haven't already. Different people react different ways to the variety of pain meds out there, and there is a lot of trial and error to figure out what works best. It's good to work with someone who has a lot of experience in pain management to most quickly figure out what to do. At the beginning, John was on pretty large doses of three medications, but he was able over two summers to get himself off everything. At the highest, he was on 3600 Neurontin, 200 Topomax & 100 Amitriptyline. He concentrated on reducing the dosages over summers so it wouldn't be during the school year. The reduction in pain came about from learning techniques to manage the pain such as staying busy / distracted, getting enough sleep, reducing stress as much as possible - but also from the movement he got back from the Mayo surgery. Some people aren't able to get pain relief, so we know John was fortunate. Hopefully that will be your case too.

I've heard some good things about Dr. McKinnon. Let us hear what you think after you meet her.

Take care,

Ellen

[Kianas Dad]

I spoke with my daughter’s neurologist and he told me that they will not do the EMG for another month. After I get the results I will get another opinion from the mayo clinic.

I have a question. As part of the therapy, she is using a tens unit on her arm and shoulder. The first couple days she felt nothing in any part of the arm or shoulder. She now slightly feels it in her bicep and tricep area. My wife and I got excited about this… does it have any significance? Plus, when she does shrugs, she is able to lift the injured shoulder as high as the other…

Thanks for the help,

Roger

[John K]

You might want to contact DR Nath at Texas Chldrens hospital. I think i'd get a second opinion on waiting he may tell you its ok to wait. Most Drs will look at your records and give you an idea if you are on the right track or if there is more they can do right away. Dr Nath is in TX it cant hurt to contact his office for advice.