United Brachial Plexus Network, Inc.

Take a look at:
http://npr.org/programs/atc/features/20 ... kling.html

There is also a message board to express your best wishes.
http://members2.boardhost.com/getwellkevin/

Apparently, he's been encouraged to go and see Dr. Kline, but hasn't done it. He is assuming his bpi will be temporary.
Dennis

I never heard of this guy tho he is obviously popular in the States, and seems to have a very good attitude. If you could email him or something i would STRONGLY urge him to see DR Kline ASAP before any possible intervention time frame passes, it would be heartbreaking if DR Kline said down the line 'well i COULD have helped 6 months back, sorry' or whatever like we know happens too often. You've been a busy guy Dennis!

Ive heard of him and I went and posted on his message board for him to visit us!

> You've been a busy guy Dennis!

I listen to NPR all day at work and happened to hear his first essay after his accident. He's a great story teller. I hope he can be a good listener as well.

Hello,

My name is Mary Ludington and I am Kevin Kling's partner and just joined this list, having received
a forwarded post from one of you through his CD distributer here in Minneapolis. Thank you so much for tracking us down.

I am responding immediately without looking at past
messages (where I'm sure I will get the best education
to be had so far) but will share an update and am very open to hearing about others' experiences.

Kevin's accident was August 11th. Diagnosis: nerve root avulsion at C6, 7 and 8. He had his third EMG
today, follow-up tomorrow. Radiologist saw no change but will spend more time with the results. In October, following his second EMG, Dr. Roxwell
at HCMC recommended that we get a consulation with Dr.
Kline. We agreed; they scheduled today's EMG after that. We hopefully will have more information about a travel date during tomorrow's consulatation with Dr.
Roxwell.

I personally have been pushing for sooner rather than later and am hearing the urgency from the few posts I've read so far. Do you all think we're still in a
good time frame? It's now been 5 months.

The unfortunate situation for Kevin is that he was born with a birth defect (TARS syndrome) in his left arm--which is short, missing a thumb, very limited use. He is now quite disabled, having depended on his right arm, which is now paralyzed. (That he had no brain trauma--and survived at all--is miraculous.)

I feel that we are surrounded by well-meaning friends who refuse to believe the surgeon's prognosis that nerve roots do not regenerate. Beseiged with stories about temporary paralysis and patients who willed themselves to heal in spite of slim hope. I assume this is rather typical?

Kevin is more open than he was about seeing Kline. He didn't want to intervene if progress were to come naturally.

I have so many questions: Does anyone on this list know of anyone who has ever experienced regenerated nerve roots? Are there others on this list with nerve root avulsion who cares to share their story? What has
Dr. Kline done for others with nerve root avulsion?
Nerve transplant? How many surgeries and what amount
of time should we expect to spend at Tulane should Kline decide he is a good candidate for surgery?

I am so grateful for this list.
I look forward to any advice. I hope caretakers are
welcome??

Sincerely,
Mary Ludington marylu@citilink.com

Hi Mary,
5 months is a long time if Kevin doesn't have any use of his hand. After surgery, the nerves have to grow from the neck to the affected area at a rate of 1 inch per month. There are other surguries that can get his hand working again, if he can get some use of his arm back. I had a motorcycle accident in December of 2000 (you can read my story here: http://ubpn.org/ubpnstories.nsf/419 ... a237c.html ), and had nerve graft surgury in June of 2001. For me C5 was avulsed and C6 was damaged. The surgeon chose to leave C6 alone, and repair C5. I had 8 hours of surgery and spent the next 3 days in the hospital. I have a long Z shape scar from my neck down to my underarm. It has now been 6 months since the surgury and one year since the accident and I am seeing some recovery, but my shoulder is still too weak to hold itself together and I still use a sling.
If Kevin's current doctors are certain that his nerve roots are avulsed, I believe the only chance he has for recovery is surgery. This is how it was explained to me: The nerve roots cannot regenerate, but with an avulsion, and as long as the rest of the nerve is undamaged, they can graft the avulsed root to a relatively unneeded branch from another root. In my case they were going to graft C5 onto a branch. It turned out that C5 was also severely damaged and they also tried to repair it with nerve grafts. I wish I would have seen Dr. Kline immediately after my accident, but my medical insurance wouldn't have allowed it. After battling, I believe I did end up seeing a competent surgeon here in Oregon. Good luck to you and Kevin, and I look forward to hearing him on the radio again soon.

Dennis Kennedy
kennedy_dennis@hotmail.com

Hi Mary, I suffered lower plexus root avulsions 22 yrs ago and had very little recovery. I was told (this was a long time ago!) that nerve avulsions will not regrow by themselves, and nerve grafts would probably not help my lower arm/hand. I decided not to pursue surgery so I have a non-working right arm which is honestly not too much of a problem for me. This would seem not be a good option for Kevin because of the pre existing condition in his left arm, hopefully Dr Kline will be able to offer some kind of help, but if avulsions really are present (an EMG is not a 100% reliable diagnostic tool unless performed during exploratory surgery on the exposed nerves) you need to see him as a priority. Kevin already seems to have a good attitude to things and I truly hope things get better and that Dr Kline gives you some hope, he has a good reputation with adult tbpi. If anyone can help, he can. Thinking of you both :0) Jenny New Zealand

Thanks, Dennis and Jenny all those who replied off list. Kevin had a consult this morning with his
surgeon and we were emphatic about getting the referral and appt. with Kline asap. (They said they would get going on it last October to aim for this month.) Will be hearing shortly about the dates. Hoping within the next few weeks.
The information on this list is invaluable--I want to
tatttoo the website address on every HCMC neuro staff members' hand...

will keep you all posted,
mary

Hi Mary;
I read about Kevin and his accident a while ago, and was wondering how he was getting on.

I have all 5 major lower plexus nerve roots avulsed, and have had one nerve transplant/graft to give some elbow movement. I couldn't have any other surgery at the time because of my breathing probs (results of the same accident that caused the BPI)This was nearly 9 years ago, and I haven't had any further surgery, or noticable recovery of function since then. As I understand it, nerves that are proven to be totally avulsed, generally do not regenerate spontaneously, and empirical results support this.
The key word here is 'proven'. It has been shown that EMG's by themselves, although helpful for a general initial diagnosis, are not 100% reliable diagnostic tools for determining the severity of the nerve damage.

Exploratory surgery is still, I believe, considered to be the best way of calculating whether any nerve repair/grafting is possible, and can often be done at the same time.

It is very[/] important to get this done as soon as possible after the damage if there is a possibilty of one or more nerves of the plexus still remaining intact; when I was injured, the general procedure seemed to be'..wait and see if any movement comes back...' but I think that attitude has slowly changed over the years.

I personally have never heard of anyone regaining total function of fully avulsed nerves, but this doesn't mean to say that it doesn't happen...or will do in the future. There are many new surgical procedures and ongoing research into nerve surgery, and spinal cord damage repair, that can also help a person with a BPI; there are people who write regularly to this board who can tell you more about that...hopefully they will see this thread and post some messages for you.

Good luck to you and Kevin; although I live in the UK, I have heard that Dr Kline is a good surgeon for adults with a bpi, so I reckon that Kevin is in good hands. ;0) Please feel free to email me if you need any more information; if you click on my name to the left, it will show my address.

Best wishes...Liz x ~(:-D