Hi again. My son is 15 & is a competitive road cyclist. He was hit by a SUV while he was on a cycling training ride in Atlanta last November. Nothing to compare with you, though: John "just" had a concussion, broken arm & leg, and the BPI. I can't imagine how you're managing with the extent of your other injuries. Don't know how your accident happened, but we're also dealing with the "fun" of the driver (who failed to yield right of way) having only minimal liability insurance coverage...
Almost worse than the flail arm is the pain. John rates it as close to a 10 on a 1:10 scale - and I'm sure you can relate. When he recently kept a pain diary, I'd thought his notes of 6, 7, 8's meant lesser pain. Instead, I learned that he actually was rating the lower numbers to indicate the duration of the pain - but that the intensity was always close to a 10. Really awful. John's currently on Neurontin (3600mg), Amitriptyline (50mg) & Topomax (currently 50mg; ultimately 150). He tried two stellate nerve blocks earlier this month but they didn't work. School is helping distract him somewhat from pain, but unfortunately a side effect of these pain meds is drowsiness. So it's all an uphill battle.
We're headed to the Mayo Clinic MN Feb 10-11, & Dr. Tiel in New Orleans March 17-18. Wish we could see Tiel sooner, but apparently they don't want to see patients until the 4 month mark. I'm so glad that you have an excellent doctor more conveniently located. Do keep us posted on your upcoming visit.
Your boyfriend sounds like pure gold, to stick by you through all of this. Sounds like he's overdue for some time in counseling, just to get everything sorted out. I expect there would be benefit to you talking things out w/a counselor together, but also each of you separately. I bet a lot of what's tough is that you're still in limbo regarding the ultimate prognosis of your BPI.
What's your work situation? Are you out on benefits? I'd been separated by my company effective 11/30; ironically that was the exact date my son was released from the hospital! But since my insurance benefits only go six months, I need to find something else pretty soon. The ultimate challenge will be balancing fulltime work & the amount of PT needed by John - not to mention the needs of the rest of the family. Guess I'll cross that bridge when I get to it!
Please do keep us all posted as you learn more. Take care & know we're thinking about you.
Ellen
Need help
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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: Need help
I can't add much to what Ellen says, Princess, she's spot on. It's great you are being proactive about seeking psychiatric support, your boyfriend may need it too as Ellen says. I think after a while it was harder on my loved ones than on me, I knew I was making progress because I was functioning in a two handed world with one hand, they could only see 'the arm' wasn't working still.
The recovery after the 2 years....well, I can flex my elbow fairly strongly but it's not much use for carrying things. Maybe if I had some recovery in my lower arm that would have helped but as it is I can hold things against my body with the bpi arm as long as it's for a short term and they are lightish, like a book or a towel. By the time the recovery happened I was adapted to one armed life anyway, so maybe that's why I don't use it more. There is probably a kind of 'trick' action involved using my back muscles as well as the biceps, this makes my back hurt so mainly I don't use my bpi arm much.
The 2 years widely quoted is a generalisation, parents of injured babies have posted about new recovery happening years after the injury-and I've spoken to other adults who have had the majority of function return in the 3rd year or later. It may be that muscles become reinnervated but take years to build the strength to actually move, even with avulsion the body will try to repair itself, those nerves don't just 'sit there', they grow, and if they do make contact with the muscles then BINGO! I personally don't know anyone with a tbpi who didn't eventually get some biceps return (doesn't mean everyone did, just in my experience so far) so maybe you will too, here's hoping! There are no real 'definites' in this injury. One of the reasons surgical solutions for the pain involving the spine so often fail is that the nerves that have been 'neutralised' in the surgery will re grow, sometimes in several places, this can result in even more pain. Our bodies are programmed to do this. One of the ways researchers have been looking into paralysis is finding a way of stimulating the body's natural healing ability-what 'switches' it on and off? The grafting surgery has been carried out for 50 years or so, it's a pretty clumsy way of repairing nerves but it's all we have at the moment. Techniques are better now, but the process is roughly the same. The first tbpi I met had an intercostal nerve graft over 20 yrs ago.
Keep asking questions and seeking answers!
The recovery after the 2 years....well, I can flex my elbow fairly strongly but it's not much use for carrying things. Maybe if I had some recovery in my lower arm that would have helped but as it is I can hold things against my body with the bpi arm as long as it's for a short term and they are lightish, like a book or a towel. By the time the recovery happened I was adapted to one armed life anyway, so maybe that's why I don't use it more. There is probably a kind of 'trick' action involved using my back muscles as well as the biceps, this makes my back hurt so mainly I don't use my bpi arm much.
The 2 years widely quoted is a generalisation, parents of injured babies have posted about new recovery happening years after the injury-and I've spoken to other adults who have had the majority of function return in the 3rd year or later. It may be that muscles become reinnervated but take years to build the strength to actually move, even with avulsion the body will try to repair itself, those nerves don't just 'sit there', they grow, and if they do make contact with the muscles then BINGO! I personally don't know anyone with a tbpi who didn't eventually get some biceps return (doesn't mean everyone did, just in my experience so far) so maybe you will too, here's hoping! There are no real 'definites' in this injury. One of the reasons surgical solutions for the pain involving the spine so often fail is that the nerves that have been 'neutralised' in the surgery will re grow, sometimes in several places, this can result in even more pain. Our bodies are programmed to do this. One of the ways researchers have been looking into paralysis is finding a way of stimulating the body's natural healing ability-what 'switches' it on and off? The grafting surgery has been carried out for 50 years or so, it's a pretty clumsy way of repairing nerves but it's all we have at the moment. Techniques are better now, but the process is roughly the same. The first tbpi I met had an intercostal nerve graft over 20 yrs ago.
Keep asking questions and seeking answers!
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highlander_1406
- Posts: 62
- Joined: Sun Dec 01, 2002 7:21 pm
Re: Need help
Hi Princess i am 18 years old and had my accident last March on a motorcycle. I avulsed c5, c6 ,c7 and slightly injured c8 and t1 i had nerve tranfers done on c5 c6 c7 in may by Proff Birch in Stanmore, London. I waited 6 months and after that time i had good hand movement and wrist move ment but had to get 2cm of my ulnar nerve transfered 2 my bicep because it never worked first time round and as of yet don have any bicep BUT i have good tricep flickering,good grip in my hand and good wrist movement. I can push my arm out from my side so that my hand is 15 inches from my side and improving SO because i had the same avulsions as you do not take what the doctors said about amputation into account unless YOU want too. There is still time for you to go and get surgery to save your nerves but you must hurry. Also important to seek out a proffesional in TBPI. I have been told to expect an improvement up to 75% in my arm so as we have the same avulsions (possibly) dont get yourself down with what the doctors say get out there and get help or even on here we are all willing to help you.
Kevin
Kevin
Re: Need help
I have made upcoming appointments with Dr. Wolfe, Dr. Price & Dr. Abbot. I'll be seeing them all before the end of the month so I'm not wasting any time. I have yet to hear of what my options are in regards to any kind of surgery that may restore my left arm. I'm so scared but its long overdue. I'm upset that none of the doctors told me about these specialists before. When I left the hospital I was under the impression that there is no chance for my left arm & they were suggessting amputation as the best way to go. Can u believe that??!! I'M NOT AMPUTATING, EVER! I may have lost the function of my arm but I'm not about to willingly give up my arm & deform my body that way. I'm afraid of going for the surgery & it not working. But I know myself & I have to try. Nothing is w/o risk & its a risk I'm willing to take. I dont ever want to look back & regret not trying my very best to do all I can do to possibly recover function. Ugh, this is diving me crazy! Will the pain & anxiety ever go away??? I'm so happy for you, 75% is excellent!!! You have given me a glimpse of hope.
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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: Need help
Hey Princess, good attitude!
Some units are now doing nerve grafts just for pain, there is a good chance that the graft will help you in that area even if you don't get the return of function you need, there are also people out there who got functional return outside the 'normal' time frame, you are right not to give up.
I'll be really interested to hear what your specialists say, and angry that people are STILL being offered amputation as 'the only option' so early in the game. The Yahoo medical page on tbpi with severe avulsions did have amputation listed as the only option, I mailed them about it but haven't checked whether they changed it yet....that protocol was out of date before the internet was invented, so they have NO excuse.
Keep us posted and GOOD LUCK :0)
Some units are now doing nerve grafts just for pain, there is a good chance that the graft will help you in that area even if you don't get the return of function you need, there are also people out there who got functional return outside the 'normal' time frame, you are right not to give up.
I'll be really interested to hear what your specialists say, and angry that people are STILL being offered amputation as 'the only option' so early in the game. The Yahoo medical page on tbpi with severe avulsions did have amputation listed as the only option, I mailed them about it but haven't checked whether they changed it yet....that protocol was out of date before the internet was invented, so they have NO excuse.
Keep us posted and GOOD LUCK :0)
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highlander_1406
- Posts: 62
- Joined: Sun Dec 01, 2002 7:21 pm
Re: Need help
Princess
If you get the nerve grafts done and have the same attitude through out recovering i think you will get a much bigger recovery than you think. You maybee one of the people who recover very fast and well so until you take the journey down the long road of recovery dont give up hope and always put in as much effort as you can when musculs start twitching because thats when they need worked.
Kev
If you get the nerve grafts done and have the same attitude through out recovering i think you will get a much bigger recovery than you think. You maybee one of the people who recover very fast and well so until you take the journey down the long road of recovery dont give up hope and always put in as much effort as you can when musculs start twitching because thats when they need worked.
Kev
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Kathleen M
Re: Need help
Princess
I see you are going to New York doctors if you check there is a gathering in NY on March 9... It would give you an opportunity for a fourth opinion...
Check this information - At the last NY gathering a young man TBPI was helped. It is always worth it to get various opinions since treatment for bpi is a very special field.
At this gathering Dr Nath will be present and he is from the Texas Childrens Hospital - they work on both adults and children. Since it is free to bpi injured it would be worth getting another opinion.
For many years I check with various doctors in and aroung the New York Area and did not find anyone to treat me until recently it was thought that older injuries ( I am birth injured) were not treatable...
I am happy to say that with a great deal of advice and PT... my arm has gotten some more range of motion and also stopped misfiring... so their is always hope....
Please check out the gathering... I will be there so at least you know another bpi adult will be there and I think Nancy is going too...
Kath
here is the link
http://www.injurednewborn.com/tristatemuseum1.html
I see you are going to New York doctors if you check there is a gathering in NY on March 9... It would give you an opportunity for a fourth opinion...
Check this information - At the last NY gathering a young man TBPI was helped. It is always worth it to get various opinions since treatment for bpi is a very special field.
At this gathering Dr Nath will be present and he is from the Texas Childrens Hospital - they work on both adults and children. Since it is free to bpi injured it would be worth getting another opinion.
For many years I check with various doctors in and aroung the New York Area and did not find anyone to treat me until recently it was thought that older injuries ( I am birth injured) were not treatable...
I am happy to say that with a great deal of advice and PT... my arm has gotten some more range of motion and also stopped misfiring... so their is always hope....
Please check out the gathering... I will be there so at least you know another bpi adult will be there and I think Nancy is going too...
Kath
here is the link
http://www.injurednewborn.com/tristatemuseum1.html
Re: Need help
This is awesome, thank you for the info, I'm definitely interested in looking into this. Just so I have this right, its for all who have bpi(adults & children) regardless how they got it (by birth or accident)? Will there only be one surgeon there (Dr. Nath)? Also, what do we need to bring with us, all medical records? Sorry if the questions are silly. I've never heard of a gathering for this & am so grateful its available. I'll have to check who can take me there so I'll let you know for sure soon.
Re: Need help
I'm trying so hard to keep my head up (high above water) & get through this. Its great to have support & know there are people out there who are helpful & truly understand. This site has been a huge resource for me & it has really got me running around to see what my chances are. Luckily my pain has lessened through the months & is now tolerable, not bad at all. I've partly grown immune to it plus Neurontin & Effexor XR work well for pain management. I need the surgery solely to regain function so I'm keeping my fingers & toes crossed. I'm a survivor so I feel as if I've used up a "miracle" already just by being here today. I'll pray for another & hope it'll be heard. You all are such beautiful people, thank you for reaching out & sharing your words. They do help & make a world of a difference. I agree that amputation should not be mentioned as the only option. The surgeon who offered it is a highly reputable Orthopedic as well as a member on the spinal cord research team. I held his expertise as very valuable so I automatically thought keeping a paralyzed arm or amputating it were my only options. There was absolutely no talk of a possible special surgery that may help my condition. That it what angers me the most 9 months post accident. I had to ask & do the research myself. There's nothing I can do now so better late than never must be my motto. I have to hold on to my good attitude now b/c now is when I need it the most!!! Will keep you all posted once I get to see all 3 specialists. Sometime b4 the 22nd of this month.
Re: Need help
My therapist & doctors feel firing in my pects & deltoids so we'll see what the specialists say to that. I'm hoping any nerve grafys I can get will help restore function since I dont have much pain. I'm trying to hold on to this attitude as long as I can. Its helping me pursue what I need to. I'll keep you posted.