United Brachial Plexus Network, Inc.

This info was on my CBS station this A.M. so I did a search for more info. My oldest brother (a business owner for 20 years) died (suicide) on August 14, 1995 because he lived & worked with this unending pain.

http://cbs2chicago.com/health/local_sto ... 55654.html

Oh, the reason I am on this site. In 1984 my 3rd born child was injured, severe LOBPI.

More related web sites

http://www.rsdhope.org/

http://www.ninds.nih.gov/

http://www.rsdfoundation.org/en/KetamineResearch.html

http://www.rsdfoundation.org/en/en_rese ... dates.html

http://www.rsdfoundation.org/test/ketamineabstract.html

International Research Foundation for RSD/CRPS

Choice of 6 different languages

http://www.rsdfoundation.org/

http://media.abcnews.com/GMA/story?id=305492&page=1

December 6, 2004

One of our members on the tbpi uk site is on ketamine, not sure yet if it's working.
Unfortunately there is no one thing that gives us all pain relief-what works for one may not work for another. I'm going thru pain spell probably induced by the frosty mornings here in NZ. I am stuck to my chair, hunched up with pain and it's hard to do anything at all. Keeping active is probably the best pain relief, and has worked for me for years, but I can't do anything because I'm in pain! It's a Catch 22.
Thank you for the links :0)

Hi Jenny,
Sorry to hear you are in so much pain. I am guessing you had an injury later in life. Did you have pain from the beginning?

When I found this site a couple of years ago I was saddened to find that my LOBPI daughter born in 1984, although generally pain free now, will probably get PAIN later as she ages.

I can see how mishapen her back is already. Last September I was standing behind her and she bent over to sign in at my nieces wedding, book at table height, and I could clearly see her mishapen back. Her left torso was always smaller, her injury so severe when born.

She will graduate from college in 1996 with a degree to teach art. So I hope this profession won't be too hard on her. As she grew up she put a lot of thought into what she would do for her profession. Originally her art was just for fun. Since she couldn't take piano lessons as her two older sisters did, I noticed she drew so well, I got her private art lessons.

Oops, I meant she will graduate in 2006.

Hi Angela
Yes I got my bpi when I was 21. I'm 46 now. The pain started immediately, I was on morphine for a while in hospital then after 3 weeks left with handfuls of meds. The pain is indescribable, feels as though your hand and fingers are being crushed and deep fried simultaneously. That particular pain is associated with avulsions and tends to die off after a couple of years, as the nerves heal. Mine comes back if my hand gets cold or sometimes for no reason at all. I have a very severe injury and have no use of/feeling in my hand, these two things are associated with ongoing bpi pain. I do have other pain from overuse, my neck and back are crooked and my shoulders click, snap and grind away like castanets. Compared to the deep frying avulsion pain the joint and muscle stuff is actually pretty tolerable, but the downside is when my good shoulder gets too painful to use then I really do feel disabled-something that hasn't ever happened to me before. The upside so far is that when the joint pain comes, I have to just rest the joints and then the pain goes away, I wish the deep fry pain would respond like that!

I must stress that I come here and to the tbpi uk board to vent-after 25 years noone without a bpi seems interested and thats what these messageboards are for. Despite complaining posts you might read from me, pain doesn't dominate my life and neither does the bpi-I have 3 gorgeous kids and I know I have to keep on keeping on. I understand your worries, especially after what happened to your brother, but despite no use of my arm and a fair bit of pain I wouldn't change a thing about my life. I am who I am, I've done what I've done. In my eyes, others have different pain to deal with, noone seems to get away too easily in this life! You are a caring parent and I'm sure your daughter will be fine, whatever this injury throws at her.

Thank you for being intersted!
Jen NZ :0)