Hi! We are 6 months into the bpi--need help and support
Hi! We are 6 months into the bpi--need help and support
Hi everyone! My name is Amy and my fiance is Jason. Last September we were hit by a truck on our motorcycle and Jason suffered a bpi (avulsion of C5,6,7,8 with T1 still intact)to his left arm. An artery was torn from his heart so they had to remove part of the collar bone to repair it but didn't replace the collar bone. He has a clavic brace and a sling. His shoulderblade is sticking out and the shoulder is curving in. This is all so new to us. He is on Oxycontin and Neurontin for nerve pain. Sometimes it works but other times it doesn't. Today I had to take him to the ER b/c the pain was so bad. The drs said that even if we amputate the pain may not go away. One dr even suggested removing the entire shoulder, shoulderblade and arm! Does anyone have any info on nerve pain or have experienced this? We also do not have a bp specialist.(We didn't know there where any. All the info I find is on babies) Who is Dr. Birch or is there anyone in the Phoenix, AZ area that you may know of? Also, I read some previos posting regarding video games, something Jason really misses. He has a Nintendo 64, any one handed controllers that anyone knows of? We have so many unanswered questions but I will start here for now. Everyone here seems to be so strong. God bless you all! Any info would be greatly appreciated!
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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: Hi! We are 6 months into the bpi--need help and support
Hi There and welcome. Sounds like Jason's bpi is a bad one, i know how that pain feels too :0( It does fade with time, not much help now, I know, but hope for the future.
As you're finding there are virtually no resources for tbpi adults out there. Some of us are currently doing something about that, watch this space. Meanwhile, there is a little info on this site, go to home page, click on the button on the right 'Resources and handbook' and then click on 'Traumatic injuries'. The info is very general but as each bpi is so very different, that's the way it has to be. Talking to others with the injury will probably help a lot.
There are quite a few bpi specialists in the US, try and find one who has dealt with tbpi adults often, many specialise in obstetric cases. Julia Terzis is one I've heard good reports of http://www.jkterzis.com/ that's a link to her site. Dr Birch-I assume you mean Rolfe Birch who's based in Stanmore, UK?? (consultant surgeons in England are called plain Mr) he is one of the pioneers of bpi surgery but he does not take fee paying patients, he is an NHS patients only surgeon as far as I know.
Sorry I can't help with the Playstation question, I've never played it. However, distraction is a major help with the pain, finding something to keep your brain occupied is really important and will help more than you think. The pain is undoubtedly the biggest issue with a serious tbpi, or it was for me anyway. I do know people who have amputated and yes, they still get the pain! There are various theories around this, it's called Phantom Limb Pain and I believe that those of us with no motor or sensory function in the arm get it too. It's bearable long term! I hope things look better soon, if you haven't already seen a bpi specialist make sure you do so soon, the window of opportunity for nerve grafting is fairly limited. I hope Jason is seeing a physio to keep the joints etc supple and moving, that's very important too. Hopefully others will have other insights, email me if you want to ask anything else. Good luck!
As you're finding there are virtually no resources for tbpi adults out there. Some of us are currently doing something about that, watch this space. Meanwhile, there is a little info on this site, go to home page, click on the button on the right 'Resources and handbook' and then click on 'Traumatic injuries'. The info is very general but as each bpi is so very different, that's the way it has to be. Talking to others with the injury will probably help a lot.
There are quite a few bpi specialists in the US, try and find one who has dealt with tbpi adults often, many specialise in obstetric cases. Julia Terzis is one I've heard good reports of http://www.jkterzis.com/ that's a link to her site. Dr Birch-I assume you mean Rolfe Birch who's based in Stanmore, UK?? (consultant surgeons in England are called plain Mr) he is one of the pioneers of bpi surgery but he does not take fee paying patients, he is an NHS patients only surgeon as far as I know.
Sorry I can't help with the Playstation question, I've never played it. However, distraction is a major help with the pain, finding something to keep your brain occupied is really important and will help more than you think. The pain is undoubtedly the biggest issue with a serious tbpi, or it was for me anyway. I do know people who have amputated and yes, they still get the pain! There are various theories around this, it's called Phantom Limb Pain and I believe that those of us with no motor or sensory function in the arm get it too. It's bearable long term! I hope things look better soon, if you haven't already seen a bpi specialist make sure you do so soon, the window of opportunity for nerve grafting is fairly limited. I hope Jason is seeing a physio to keep the joints etc supple and moving, that's very important too. Hopefully others will have other insights, email me if you want to ask anything else. Good luck!
Re: Hi! We are 6 months into the bpi--need help and support
Hello Amy, sorry to read about your fiance Jason & his tbpi, I hope everything goes well for you both. But as jennyb says you have to see a specialist asap, time is of the essence(don't know if that is spelt right) as for the the pain, it will ease through time, I remember what I was like at the start, it was a rough time for me & my wife Carol I was crying with the pain I just could'nt hold it in any longer, it was a constant fight all the time, but tell Jason to keep strong & try & get him to keep busy(easier said than done) family & friends are a vital part of his recupiration, I was lucky my family & friends were great, especially my son Mark who was born when I was in the hospital with my tbpi, if it was'nt for Carol & Mark I don't know what would have happened. I take Neurontin aswell & it does work a little bit for me & I take amitriptilene at night when I go to bed, it helps me sleep. I've always said "if you get a good nights sleep you can handle the pain so much better the next day" as for getting the arm amputated the doctor was right he will never get rid of the pain, I was told the same thing, but your life will get back to normal( it just takes a little while ) i'm back driving my car & i'm back to work collecting refuse & throwing black bags in the back of a truck. I wish the both of all the luck in the world & hope everything goes well for you both.
take care
bigsel
Scottish tbpi
take care
bigsel
Scottish tbpi
Re: Hi! We are 6 months into the bpi--need help and support
Hello Amy
I sorry to hear about the accident and also to read about Jason and all the pain...
I see you need information on Arz. area
The doctor speaking and doing exams is Dr. Nath from the Texas Hospital. I know he has examined many adults both birth injured and tbpi... I am birth injured and he examined me and gave me very valuable advice that really helped me to get the PT I needed at that time.
Please check this out and call perhaps they can help you... Kath
This is Bridgets post: It was posted to the adult board because evaluation is not limited to just children.
Dr. Nath in Phoenix Bridget Posted: Feb 13, 2002 2:43 PM Reply
Dr. Nath will be the keynote speaker for the Arizona Physical Therapy Association's annual conference held in Phoenix on March 9. He will then be meeting with children for free evaluations (Dr. Nath has obtained pro bono permission from the Arizona Medical Board to do so), and therapists will have the opportunity to observe those evaluations. Anyone interested in setting up an appointment to meet with Dr. Nath or to attend the conference should please contact Bridget McGinn at: bridget@ubpn.org or 602/996-1693 as soon as possible.
I sorry to hear about the accident and also to read about Jason and all the pain...
I see you need information on Arz. area
The doctor speaking and doing exams is Dr. Nath from the Texas Hospital. I know he has examined many adults both birth injured and tbpi... I am birth injured and he examined me and gave me very valuable advice that really helped me to get the PT I needed at that time.
Please check this out and call perhaps they can help you... Kath
This is Bridgets post: It was posted to the adult board because evaluation is not limited to just children.
Dr. Nath in Phoenix Bridget Posted: Feb 13, 2002 2:43 PM Reply
Dr. Nath will be the keynote speaker for the Arizona Physical Therapy Association's annual conference held in Phoenix on March 9. He will then be meeting with children for free evaluations (Dr. Nath has obtained pro bono permission from the Arizona Medical Board to do so), and therapists will have the opportunity to observe those evaluations. Anyone interested in setting up an appointment to meet with Dr. Nath or to attend the conference should please contact Bridget McGinn at: bridget@ubpn.org or 602/996-1693 as soon as possible.
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George
Re: Hi! We are 6 months into the bpi--need help and support
Hi Amy, so sorry to hear of Jason's injury. You need to get to a specialist soon. There is indeed a timeframe for nerve surgery. We all know about the pain.....and it can be very intense at times.....especially early in the injury. However, it seems to wane a bit as time goes on. Does it ever go away?? well....mine hasn't yet, but I've only been hurt a little over two years. The pain has dwindled though to a manageable level. You are doing right to seek help for Jason. Be proactive and ask your docs lots of questions.....get both sides. Feel free to e-mail anytime. Great people here who have "been there".......so..lots of support here !! Good luck to you both 
)
George
)George
Re: Hi! We are 6 months into the bpi--need help and support
Hi Amy. I had a motorcycle accident 14 months ago, and also suffered a left side BPI. You should get to a specialist as soon as possible as time is a big factor in getting any recovery. I did a lot of accupuncture for the first 9 months after my injury. Most of my pain is gone. I don't know if the accupuncture helped or if the time did it. But I certainly didn't have anything to lose. Good luck,
Dennis
Dennis
Re: Hi! We are 6 months into the bpi--need help and support
Hi Amy and Jason...I'm so sorry to hear about Jason's accident and the results of it.
As everyone has said here, it is very important that Jason sees a surgeon who is experienced in treating this type of injury. The timeframe for nerve grafting and/or transplanting is quite a short one, and it is also important to keep the muscles of the whole arm supple to prevent atrophy as much as possible. The medication for the pain can be difficult to get right, but it does get better as time goes by; as everyone has said, keeping busy and fully occupied helps tremendously.
What worked for me in the early days was the positive support of my family and friends. I was never really on my own, I always kept as busy as possible, went out for a walk if the weather was good, and took up a new hobby...which eventually turned out to be a way of earning money...long story..! ;0)
I also took up painting again, which is something I never had time for before the bpi, and also rode on a motorbike for the first time in my life..! Before I knew it, a couple of years or more had slipped by.
I guess what I'm trying to say is that in between all the Drs. appointments, physio, possible surgery, all the important medical stuff that Jason will be going thru, it's just as important, if not more so, to remember to take time out to do other things that will make him feel more positive, take his mind off it all, and in this way help with the pain. Hope this helps a bit; we all know what you are going thru and please feel free to email.
Best wishes to you both...
Liz B XX
As everyone has said here, it is very important that Jason sees a surgeon who is experienced in treating this type of injury. The timeframe for nerve grafting and/or transplanting is quite a short one, and it is also important to keep the muscles of the whole arm supple to prevent atrophy as much as possible. The medication for the pain can be difficult to get right, but it does get better as time goes by; as everyone has said, keeping busy and fully occupied helps tremendously.
What worked for me in the early days was the positive support of my family and friends. I was never really on my own, I always kept as busy as possible, went out for a walk if the weather was good, and took up a new hobby...which eventually turned out to be a way of earning money...long story..! ;0)
I also took up painting again, which is something I never had time for before the bpi, and also rode on a motorbike for the first time in my life..! Before I knew it, a couple of years or more had slipped by.
I guess what I'm trying to say is that in between all the Drs. appointments, physio, possible surgery, all the important medical stuff that Jason will be going thru, it's just as important, if not more so, to remember to take time out to do other things that will make him feel more positive, take his mind off it all, and in this way help with the pain. Hope this helps a bit; we all know what you are going thru and please feel free to email.
Best wishes to you both...
Liz B XX
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admin
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Re: Hi! We are 6 months into the bpi--need help and support
Amy and Jason,
I sent you an e-mail already, but in response to the nintendo question, my 6 year old has no use of her left arm, and she plays the playstation really well! Plus her hands are much smaller than Jason's. She is also really into the gameboy, which she also does one handed.
Take care,
Stephanie
I sent you an e-mail already, but in response to the nintendo question, my 6 year old has no use of her left arm, and she plays the playstation really well! Plus her hands are much smaller than Jason's. She is also really into the gameboy, which she also does one handed.
Take care,
Stephanie
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marissmatt
- Posts: 4
- Joined: Wed Feb 06, 2002 10:12 pm
Re: Hi! We are 6 months into the bpi--need help and support
Hello Amy and Jason,Joe here,was injured new years eve.(Shot in right shoulder area, injured bpi)More importantly like everyone has said early eval/treatment
is paramount for recovery from a bpi injury. My wife has done extensive research looking for the right doc's. We're in N.J. and we've been to see Dr. Belzberg in Baltimore (Johns Hopkins Hosp.) and Dr. De'Lotobiniere in New Haven, Conn.(Yale Univ. hosp) Both excellent Bpi doc's although we chose Dr. Belzberg for several reasons. He himself recommended Dr. Kline who is in New Orleans. Also keep tuned into this sight, a great resource for info. and support, and if I may suggest, Jason may want to look at the sight,I find it supportive and a way to pass the time! Good luck, any ?'s feel free to "mail" us. Joe
is paramount for recovery from a bpi injury. My wife has done extensive research looking for the right doc's. We're in N.J. and we've been to see Dr. Belzberg in Baltimore (Johns Hopkins Hosp.) and Dr. De'Lotobiniere in New Haven, Conn.(Yale Univ. hosp) Both excellent Bpi doc's although we chose Dr. Belzberg for several reasons. He himself recommended Dr. Kline who is in New Orleans. Also keep tuned into this sight, a great resource for info. and support, and if I may suggest, Jason may want to look at the sight,I find it supportive and a way to pass the time! Good luck, any ?'s feel free to "mail" us. Joe
Re: Hi! We are 6 months into the bpi--need help and support
Hi,
sorry to here about the accident i just had surgery for a nerve graph on c5, c6 and c7. The docter had removed alot of scar tisue around the the area where the nerves were severed. she said it may reduce the pain and it DID!!. I was on 40 mg of oxycontin 3 times a day with nerountin and now i'm only on 20 mg 1 time a day. i still have some pain but its slowly getting better i hope this helps you.
sorry to here about the accident i just had surgery for a nerve graph on c5, c6 and c7. The docter had removed alot of scar tisue around the the area where the nerves were severed. she said it may reduce the pain and it DID!!. I was on 40 mg of oxycontin 3 times a day with nerountin and now i'm only on 20 mg 1 time a day. i still have some pain but its slowly getting better i hope this helps you.