Hi Stewart, I'm really sorry to hear about your accident and the ongoing pain.
As we are doing some work about tbpi pain for the tbpi uk site, I'd be interested to know what other methods of pain control the specialist tried before the DREZ procedure, such as distraction, anti depressants etc, as DREZ is even today considered an operation of last resort, and a few years ago was even more risky.. I also can't work out if the phrenic nerve damage started after the DREZ, as it's not usual for a bpi to continue getting worse after the initial injury. Are the opoids helping much, other bpi specialists have found them not very effective with tbpi pain and don't usually prescribe them because of the side effects, have you tried any other pain meds?
You're right, noone should have to live in pain and it's good you are still seeking answers. Good luck and best wishes for a pain free future :0)
2 Years Post-Surgery
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: 2 Years Post-Surgery
ps, here's our pain page from the tbpi uk website http://tbpiukgroup.homestead.com/centralpainbpi.html it's been verified by one of the top tbpi docs in the uk whose unit has been working on the pain since the Second World War, you might find it useful. Take care!
Re: 2 Years Post-Surgery
Stewart I use Topomax with no side effects and it works great for me. I take just 25mg 2 times a day. There's a Topomax posting you might want to read. Paul
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Dianna williams
- Posts: 31
- Joined: Tue Nov 06, 2001 8:57 pm
Re: 2 Years Post-Surgery
as a parent of a tbpi, it is very hard,
but you can alway count your blessings,
when Errett was hurt it was very hard for him to cope, and for us, but we always told him, it is just his arm,
that he is still able to breath,walk, talk,and that he is still alive,
at first he wanted to hide and not go to school or get out of his room, i told him he need to get out, and he said WHY, i told him because he still can!
and yes i think all TBPI need some form of therpy on how to handle the injury ,
but where do you turn? we turned to God and each other, just because Errett was hurt, i found his web site it was great help to me, and we looked at the big picture here,
we still had Errett, he is still alive, we are able to see him, talk to him, help him, we dont have to go the cemetery to talk to him,
and that is what counts,you dont stop loving and careing for someone just becouse they are hurt.
all it takes is the faith of a mustard seed, and that is what has gotten us thur a tough time.
by all means i am no holly roller, but i do have the faith of that mustard seed.
i even walked around the house with my arm tucked in my pants just to put my self in his place to see how i could help him do things easier,it helped me understand his anger a little.
but in the long run dont give up! talk to each other,and others who have gone thur what you are facing
they just may have a idea that you have not thought of yet.
but you can alway count your blessings,
when Errett was hurt it was very hard for him to cope, and for us, but we always told him, it is just his arm,
that he is still able to breath,walk, talk,and that he is still alive,
at first he wanted to hide and not go to school or get out of his room, i told him he need to get out, and he said WHY, i told him because he still can!
and yes i think all TBPI need some form of therpy on how to handle the injury ,
but where do you turn? we turned to God and each other, just because Errett was hurt, i found his web site it was great help to me, and we looked at the big picture here,
we still had Errett, he is still alive, we are able to see him, talk to him, help him, we dont have to go the cemetery to talk to him,
and that is what counts,you dont stop loving and careing for someone just becouse they are hurt.
all it takes is the faith of a mustard seed, and that is what has gotten us thur a tough time.
by all means i am no holly roller, but i do have the faith of that mustard seed.
i even walked around the house with my arm tucked in my pants just to put my self in his place to see how i could help him do things easier,it helped me understand his anger a little.
but in the long run dont give up! talk to each other,and others who have gone thur what you are facing
they just may have a idea that you have not thought of yet.