I had no idea there were so many people who had the same injury as I do.
I was in a motorcycle accident in 1987 and I had a muscle transfer done @ Mayo clinic and I can bend my arm at the elbow. I have full use of my hand.
I always had tingling pain and once in awhile a shooting pain but lately, its been 16 yrs and three children later, the pain is unbelievable worse. I'm not a nice person and the pain shoots so hard that it takes my breath away. If I could rate it 1-10 at its peek its defintely a 10!
I tried neurotin, 4500mg a day, it made me out of it and it was hard to remember to take 15 pills a day. Plus the pain wasn't gone, very slightly. I sow a dr at UIC and they had nothing to offer me other than PT.
What is out there that I don't know about? I need help or I don't know how much more I can take, I have 3 children to live for. They're all thats keeping me going.
unbelievable pain
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Kathleen M
Re: unbelievable pain
I wish I could say more to help you. We just had a program with Dr.Belzberg from John Hopkins Hospital in Maryland. He is a well known pain specialist this past weekend he explained the combination of drugs needed to help with the crushing pain of tbpi.... please contact his office... Or a nearby pain clinic...there are many pain centers around but I know he is one of the top specialist in this area...
If I can help please e-mail
Kath
If I can help please e-mail
Kath
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admin
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Re: unbelievable pain
Maybe you could try vicodin (hydrocodone) 5/500..........I used to take 6 a day but am now down to 1-2 in addition to 3600 nuerontin and 125 mg of topomax. Obviously the vicodin is a narcotic so you have to be careful not to become dependent on it 'cause then it won't work anymore. Don't take it the same time each day, every day........just take it when it's really awful. I have many days that seem completely unbearable, you are not alone. Hang in there, those kids need you!!!
Re: unbelievable pain
Hang in. Have has any surgery lately or injured yourself in anyway lately? I had surgery last year to stop a leakage of spinal fluid and my 'normal' pain levels spiked for about a year. My dentist noticed it from the wear and tear on my teeth from clenching my jaw. Drugs were ineffective, although the occasional medicinal doobie helped me sleep.
It has now dropped to presurgery levels, a steady painful hum with spikes that hurt like hell but will pass.
I do breathing, massage, pressure points, etc, and wait for the next day. My 3 kids see the pain and help with shoulder rubs and give me space. Please don't give up. Vent the anger in safe ways. I play squash and that works a lot of it off. Talk to your kids, hug them when you can.
Listen to Johnny Cash's "Hurt" and cry a little.
It has now dropped to presurgery levels, a steady painful hum with spikes that hurt like hell but will pass.
I do breathing, massage, pressure points, etc, and wait for the next day. My 3 kids see the pain and help with shoulder rubs and give me space. Please don't give up. Vent the anger in safe ways. I play squash and that works a lot of it off. Talk to your kids, hug them when you can.
Listen to Johnny Cash's "Hurt" and cry a little.
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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: unbelievable pain
Hi there, sorry to hear about the pain getting so bad. It can and does happen in longtermers, if it gets really acute it might be worth checking to see if you hurt it somhow, do you have any feeling in the skin surface? Mine still gets bad sometimes, but it never gets worse, if you see what I mean...
I agree with everything Henry says, and like him I have found over the last 23 years that cannabis is really effective when it gets tooth grittingly hard. It is on the point of being legalised in mouth spray form in the UK, following successful trials with a large group of tbpi patients. Holland has just legalised it for medicinal use too, it works for me and I wish they would hurry up and legalise it here in NZ.
Exercise can and does help, but if someone touched my back on the bpi side I'd hit the roof....massage is not for everyone.... I wish my 3 kids were as sympathetic as yours tho, Henry!
As you are/were (?) a biker, you might be interested in this site we set up, www.tbpi-group.org it's to provide info for tbpi as there is very little on the web about our condition. It's easy to find stuff about birth injuries but as much of that info doesn't apply to us we set out to change things. Motorbikes are, unfortunately the commonest cause of tbpi, the messageboard attached to the site contains a LOT of bikers, and the 'communities' section has profiles of many of our members. Beware, reading all that stuff sometimes sets my pain off!
Take care, relax, hope you're feeling better SOON! :0) You can mail me by clicking on my name if you want to talk any time...
I agree with everything Henry says, and like him I have found over the last 23 years that cannabis is really effective when it gets tooth grittingly hard. It is on the point of being legalised in mouth spray form in the UK, following successful trials with a large group of tbpi patients. Holland has just legalised it for medicinal use too, it works for me and I wish they would hurry up and legalise it here in NZ.
Exercise can and does help, but if someone touched my back on the bpi side I'd hit the roof....massage is not for everyone.... I wish my 3 kids were as sympathetic as yours tho, Henry!
As you are/were (?) a biker, you might be interested in this site we set up, www.tbpi-group.org it's to provide info for tbpi as there is very little on the web about our condition. It's easy to find stuff about birth injuries but as much of that info doesn't apply to us we set out to change things. Motorbikes are, unfortunately the commonest cause of tbpi, the messageboard attached to the site contains a LOT of bikers, and the 'communities' section has profiles of many of our members. Beware, reading all that stuff sometimes sets my pain off!
Take care, relax, hope you're feeling better SOON! :0) You can mail me by clicking on my name if you want to talk any time...
Re: unbelievable pain
hey hate to hear about the pain i was on 4500mlg of neurtion and cut back down to 600mlg a day didnt think it was working till i tried to come all the way off of it i dont think the big dose was necceasary but found as long as i had a little in my system that it seems to help some i also take amitrptylin and ambien to haelp with sleep i think it works check with your dr about a tens unit it helps some people with the pain when you said u/c did you mean university of cinncinnati because thats the hospital i go to for the therapy and my dr is there hes pretty good maybe he can help with the pain managment let me know if that is your area and ill give you his name good luck and hang in there
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admin
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Re: unbelievable pain
Hey Jen-my husband and even my mother said I should try cannibas. I am so against drugs, for myself. I never liked the feeling of not having control of myself. I even had my children naturally. I have a high tolerance for pain. But I have days that I can't even drive because the pain shots so hard. I wish they could just kill off those nerves without losing more movement or the other horrible side effects. One dr even looked my in the eyes and said "people live long horrible lives in your condition" Isn't that nice? My husband is trying to get a dr in my area to get PT and have someone lay out my options for me and tell me what each ones side effects are. No I was never a "biker". It was just the cool thing to do here, get a new motorcycle senior yr in HS back 1987. Thanks again, Jen. How do you deal w/ the pain?
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admin
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Re: unbelievable pain
I agree with you, the neurtion work but alittle bit. I went through hell getting weened off it (I want a another child)! I couldn't keep up with filling my prescription and calling my insurance to get them to pay for it. One time it was over $500. 4500mg aday, it goes fast. I might try it again after my baby is born. But what does all these meds do to our system? I'm a health nut and I want to be healthly inside and live long for my kids. UIC is Univ of Illinois-Chicago. Scarey place. Went once and wont go back again. I see from others that alot of people see Dr Belzberg @ Johns Hopkins. I have alot to figure out. But I think my injury isn't as bad as most from reading all these letters. Mine was c5,6 and 7. I have full use of my hand and can bend my elbow, from a muscle transfer. Thanks for the good luck. How long have you had your injury?
Re: unbelievable pain
i had my accident aug 6 02 had surgery jan 13 03 intercostal nerve graft i avulsed c5 c6 c7 and streched t1 c8 t1 c8 are the only ones that give me pain but itll drive you crazy if you let it the weather seems to have a big effect on it the colder the worse the pain is
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admin
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Re: unbelievable pain
I only know c5,6 and 7. What does t1 and c8 do? What function did you lose from those and were are they related to c5, 6 and 7? Where do you go for PT and what do they do for pain relief? I am soooo desperate I'll do anything. I even tried to be hypnotised. (sp?) Didn't work and I felt goofy. What kind of accident did you have? I am so curious, I have never met anyone who had an injury like me until 3 days ago. I seem so desperate, don't I?