Two questions

[punchy sue]

Howdy!

Question 1: How many of you with diagnosed T1 avulsion have Horner's syndrome or who doesn't show any signs even though T1 avulsed?


Question 2: How many people had severe neuropathic pain from the get-go right after their accident? If there was a delay in the onset of pain, how long did it take to set in?

You guys are the best resource for my questions because unfortunately TBPI is part of your life too. I'm just trying to figure some things out so I'd appreciate your responses.

THANX LOVE SUSAN

[jennyb]

I have T1 avulsed, and Horner's syndrome. It's not as bad as it was, it just shows when I'm tired.

My pain started immediately after the accident (I remember screaming my head off in the ambulance) and carried on as bad as it gets for a few months, it's gradually got better but I can still get a spasm that puts me on the floor sometimes.

Hope this helps.
Cheers Jen NZ

[Susie Kaye]

Hi Sue,

I have never been able to find out which nerves were avulsed. Suffice it to say that my R. arm & shoulder were totally dead. I also have Horner's syndrome. My eye bugs me alot of the time. It also gets worse when I'm tired. I also had nerve pain from the beginning. It is better now, but like Jen, there are times when it is unbearable! I hope this helps you.

SusieKaye

[Karl w/ a K]

Hi Susi..ahhh..Susan...Ooww...whuch ya hit me for???
Just wanted to ask you a question...can you describe Honer's syndrome for me? Although I only avulsed c5 & c6, I stretched the s#&! out of c7-T1. I rememmber my eyes would not dialate correctly at first. I looked like an addict for the first four months.
Thanks...Karl...

PS..I finally figured out how to regester for the TBPI site. I started to post something last night, but after reading for a bit I decided not to. I realized that I still have much to learn. And it was best for me to keep my mouth shut and my mind open.

[Gayle Ozzy]

Hi,
I have avulsed C5, 6, 7, 8 & T1. I have Horner's syndrome. I bugs me too, and it also is worse when I am tired.
My neuropathic pain did not kick in till 3 wks after my accident. Absolutely nothing in BPI arm before then. I also amputated my other arm and shoulder in the accident and had terrible phantom pain from the minute it happened, so maybe that had something to do with it. I have heard from a few people however that said there was a short delay in the onset of the pain.
Hope this was helpful
Gayle

[Karl w/ a K]

Hi Jamie & Gayle,
"It's like totally awesome dude, for sure". Greetings from sunny southern California (could you tell). "Jamie, bro, your my hero, dude". Your toughing it out without the meds. Good for you mate. I hope that the pain is lessening daily, and I mean that. I am right in the middle of a book called "The Pain Cure". I hope it’s all that its hyped up to be. And I hope that it will help all who invest their time and energy in it. Some of what I've read so far is just good common sense. Some of it is new to me and makes very good sense. It talks about how VERY important nutrition is in controlling pain and depression, and why. And how VERY important exercise is in controlling pain and depression, and why. So Jamie, sense you and Jack have had your differences, I'd like to make you this offer. I have a spare copy of the book and would gladly loan it to you on one condition. That condition would be if you choose not to read the book, you loan the book to whomever you deem ready for it. One of the problems I'm having with the book is that it requires the courage to give up the meds, and approach your recovery like you’re in training. Much like an athlete. Which is what I was at the time of my accident. So I do not understand why I'm having such a hard time. I think it has to do with my image of myself now. I feel like a manatee instead of a dolphin. "I'm a manatee, I live in the ocean". Send me an email with your address, and I'll send you the book. "For sure, dude"...Karl...

PS."I have a layer of blubber to keep me warm". ""It just so happens you live in the ocean cause you ain't got no job, sea cow. You need to get a job and go to weightwatchers"". "But I'm a manatee". ""yeah, what ever sea cow"".

[punchy sue]

Aloha!

Thanx for the replies and Carl, I would probably have punched you! But not hard or at least in your BPI arm so you wouldn't have felt it. HA HA! Horner's syndrome is associated with T1 alvulsion and causes partial paralysis around the eye of the affected side. Naw Jamie/Gina, I'm not from Texas or even down in them yonder states down thar. I live in Virginia because "Virginia is for Lovers!".
i guess I sould include y'all in why I asked my questions.

I didn't have pain in my affected arm for 1 1/2 - 2 months after my accident. My T1 was diagnosed avulsed but it was never proven thru MRI, myeleogram or exploratory surgury. I don't have Horner's syndrome which has always seemed odd to my doctors. I came up with a theory that perhaps I had Thoracic Outlet Syndromen which my C8/T1 nerves were being pinched by my first rib. I didn't have pain in the beginning because the muscles in my shoulder still had tone. But as the muscles atrophied away, my shoulder slowly sagged until C8/T1 became pressed against my first rib. At this point the nerve pain started. I tried to explain that to my doctor on Wed. and he just laughed. Thing is, when his intern was checking me out before the doctor came in, I told him when I rub my pecs, I get tingling sensations in my fingers. He said that made sense because that is where the brachial plexus passes thru and the nerves are reacting to being palipated. My question is, if my total brachial plexus is avulsed, then there should be no nerve to irritate?

Sometimes the all knowing personalities of doctors really bug me!

ALOHA AMOUR SUSAN

[admin]

Hi Susan

I suffered right BPI last May. I too also got Horner's syndrome in right eye. Initially was very noticable, but now the pupil is nearly back to normal size. It is only really only noticeable if I am really tired and had slightly too much of the old alcholic beverages. Otherwise people would not notice. As for the pain I didn't start to be pain until about three months after the accident and then it started with avengence and hasn't stopped since. I am on gabapetin (spelling) about 1500mg a day. Sometimes it helps..sometimes it doesn't...take care regards Michael

[admin]

Hey Susan,

My last visit with a neurosurgeon, said that I had avulsed C7-T1, severed C6. (I have a paralyzed right hand but my arm has full rang of motion.) I do have horner's syndrome, my pupil was dilated but now, it's getting better. The only thing is the drooping eye which seems to be going away but extremely slowly.

I noticed pain my my BPI arm almost right away. My right forearm was so painful, burning sensation and I told the docotors in the ER and all they said was, " Hunny, there's no bones broken in that arm." They were more worry about my right arm where I broke my humerus bone.

Hope I have helped in some very small way. If you need any more info, please let me know.

[lizzyb]

Hi Susan,

Yeah I have Horners too and it was VERY noticable in the early days. Only noticeable now if I'm really tired. Even the professionals can't tell these days (I am 12yrs with a TBPI)I have never had any problems associated with it, just that it looked 'funny' in the early days.

The pain is a bit of a mystery too...I didn't get any to speak of in my arm for the first week or so, BUT I was mostly unconcious for that time, plus I had 13 mashed ribs, the pain of which kinda took over everything else. When the pain did hit, well...we all know what thats like. I have all 5 BP nerves avulsed.

Funny you should mention the tingling in your fingers from the pecs...I get all sorts of weird and not so wonderful sensations in the arm hand and fingers when I touch various bits, (!) side of the face included. As far as I know, and me and Jen have studied this subject on and off for years, it is the brain remapping itself, trying to make connections and filling the void left by the nerve damage.

It could also be stray bits of nerves from the root stumps regrowing and finding any old direction to go in. Apparently, a nerve that regrows, but doesn't have a definite pathway to travel in, (as in a nerve transfer) will usually head off to the nearest muscle to innervate...something to do with microscopic chemical attraction...but the brain will still think it has innervated its original muscle, thats why you get these very odd sensations in different parts.

AND to complicate things even more (bet you're sorry you asked now...!) when a nerve is avulsed, it doesn't necessarily mean that all the microscopic nerve strands are pulled out...there could be stray sensory ones left in, still attached to the muscles or skin putting out very weak signals, too weak to give movement, but enough to give some sensation.

Multiply those scenarios together, and you can easily see why this injury throws up so many why's and wherefores and why no-one has exactly the same injury as another.

Got to say something about the Drs., and I apologise now if I upset anyone; the Drs DON'T know everything, in fact, the more I hear about and research this injury, the more apalled I am by what is, frankly, just guesswork by some of them.

I wish, just for once, that the ones who don't know what they are talking about would have the good grace to just admit it, then try and find out more from the people who DO actually know a bit about this injury and learn. After all, it's our lives that they are messing with...okay, rant over...it's been that kind of week!

Lizzy B :0)