No longer a lurker...
No longer a lurker...
This is my first post after being a lurker for some time. Sandy's post about Bextra made me decide to cross over : ) My boyfriend has a left bpi with total paralysis to his left arm. A van pulled out in front of him and his gsxr750 on 10/30/03. He really gave the trauma team a load to work with, but thank God for that $600. helmet. It has been a really tough year but we try desperately to stay positive and move forward, but as you all know it can be very hard sometimes. He had surgery in June at LSU with Dr. Tiel. So far there has been no change, but it is still kinda soon after surgery. His pain as all of you know has been the biggest issue. It is so bad that is causes a downward spiral of other problems. No sleep, depression, more pain, you guys know the drill. He is taking Neurontin, Amitryptyline, and Tylox for the pain, but when the bad days come they come in groups and nothing works. When I read Sandy's post about Bextra, I called his doctor immediately. He started it yesterday, so wish us luck. We know it may not work but we will exhaust our options trying to relieve his pain. I look forward to talking to you all as many of your post's have helped us already. Sam
Re: No longer a lurker...
Hey -
One thing that's fairly realistic to expect is that as the transferred or grafted nerves begin to grow, the pain will lessen. It's pretty rare that surgery doesn't accomplish this - and Dr. Tiel is one of the best.
About 1 1/2 years from surgery & with all five avulsed, John is almost completely off his meds - and his pain was unbearable before (3600 Neurontin, 200 Topomax, 100 Amitriptyline). I remember when he kept a pain diary & I asked him about the numbers (ranging 6-10), he said the pain was always a 10 & the numbers he wrote down just represented how long the pain lasted.
He now just takes 600 Neurontin & I never see him showing signs of pain.
Ellen
One thing that's fairly realistic to expect is that as the transferred or grafted nerves begin to grow, the pain will lessen. It's pretty rare that surgery doesn't accomplish this - and Dr. Tiel is one of the best.
About 1 1/2 years from surgery & with all five avulsed, John is almost completely off his meds - and his pain was unbearable before (3600 Neurontin, 200 Topomax, 100 Amitriptyline). I remember when he kept a pain diary & I asked him about the numbers (ranging 6-10), he said the pain was always a 10 & the numbers he wrote down just represented how long the pain lasted.
He now just takes 600 Neurontin & I never see him showing signs of pain.
Ellen
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: No longer a lurker...
Samn & Adam welcome to the club that no one wants to join as we tend to say aorund here. Ther are tons of peeps who are and have been going through the same things you are speaking of! Please feel free to ask as many questions as needed, no question is too dumb for us, chances are they have already been asked too! Ther eis a tons of knowledge here too so read away, I still 3 years later am learning new things about this da*n injury! Another great website to check out is http://www.tbpiukgroup.homestead.com/index_1.html This was started by a group of peeps in the UK who are TBPI, they are good for a few laughs too! Best of luck!
Courtney
Courtney
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admin
- Site Admin
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Re: No longer a lurker...
Ellen, So youre saying that if the nerves are healing after surgery, then the pain will ease up? I thought it was the other way around, but then again, Im not really sure.
Re: No longer a lurker...
Hey Priscilla,
This would apply to surgery involving nerve transfers or grafting - and at the point the nerves have reinnervated the muscle.
Our thinking is that at this point, even though the nerve pathways are now different between the brain's command to move & actual movement - that the brain recognizes the command was "heard & acted upon", and then begins to turn down the pain volume signal thingie.
How's that for a scientific explanation? I've seen other postings on this site that bear this out. I might be wrong in my rationale as to why the brain backs off, but for most people the pain does seem to get better. I've read of just a couple for whom this didn't happen (and my heart goes out to them).
Let me know if I've confused you further!
Ellen
This would apply to surgery involving nerve transfers or grafting - and at the point the nerves have reinnervated the muscle.
Our thinking is that at this point, even though the nerve pathways are now different between the brain's command to move & actual movement - that the brain recognizes the command was "heard & acted upon", and then begins to turn down the pain volume signal thingie.
How's that for a scientific explanation? I've seen other postings on this site that bear this out. I might be wrong in my rationale as to why the brain backs off, but for most people the pain does seem to get better. I've read of just a couple for whom this didn't happen (and my heart goes out to them).
Let me know if I've confused you further!
Ellen