what to do for my son
what to do for my son
My son has 3 ner avulsions (C7, C8, T1). A neurosurgeon has told me he would not bother with C8 and T1 as the results have been poor. He has had sucess with C7 (i think). He said, the alternative is amputation. Could people who have had these avulsions and subsequent surgeries give me feedback on their results and what surgeons have told them? Also, He is in significant pain which has not been touched by 40mg of oxycontin bid and 900mg of neurontin tid. He has dependent edema. Please help...Michele
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: what to do for my son
Michele,
I am so very sorry that you and your son are having to deal with this injury. Your neurosurgeon may be right about C8 & T1. For nerves to regenerate the whole length of an adult arm and reach the intended muscles of the forearm and hand before they atrophy beyond repair is a tragic predicament. But I wouldn't listen to anyone who wasn't a well seasoned Brachial Plexus Injury surgeon that deals specifically with Traumatic injuries and adults , as opposed Obstetrical BPI (injury at birth).
I don't know where you are located, but I'm in Los Angeles and ended up having my surgeries done at the Mayo Clinic in MN, which goes to show how hard it was finding surgeons that I could fully trust the future of my arm with. I searched coast to coast and found them to be the best. Don't come to any conclusions until you've gotten a 'qualified' second or third opinion. And time is of the essence, best chances for return are when surgery is done within a four month window. I wish you both the best.
Good Luck,
Chris
I am so very sorry that you and your son are having to deal with this injury. Your neurosurgeon may be right about C8 & T1. For nerves to regenerate the whole length of an adult arm and reach the intended muscles of the forearm and hand before they atrophy beyond repair is a tragic predicament. But I wouldn't listen to anyone who wasn't a well seasoned Brachial Plexus Injury surgeon that deals specifically with Traumatic injuries and adults , as opposed Obstetrical BPI (injury at birth).
I don't know where you are located, but I'm in Los Angeles and ended up having my surgeries done at the Mayo Clinic in MN, which goes to show how hard it was finding surgeons that I could fully trust the future of my arm with. I searched coast to coast and found them to be the best. Don't come to any conclusions until you've gotten a 'qualified' second or third opinion. And time is of the essence, best chances for return are when surgery is done within a four month window. I wish you both the best.
Good Luck,
Chris
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Re: what to do for my son
Thank you Chris for your reply. How did your surgery turn out? Are you saying that they don't reconnect the nerves but transplant them? I don't understand it regenerating the entire length of the arm. Who was your surgeon. Do you know if they take workman's comp?
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admin
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Re: what to do for my son
Hi- We r living in South Africa. My son has C6-T1 avulsions. It has been 2 years. When I strted looking for help, the only person we have in my country that would help is a handspecialist- no Brachial Plexus dr's- Looking back, as a mother, I would strongly advise you to get BPI specialist info and help- even if need be to move mountains to get your child to one of hospitals recommended on site- as quickly as possible- time VERY NB- pref before 6 mths- In these 2 years things has moved so,o fast, that amputation is like an option out of the middle ages , compared with what is available and in the pipeline! Just an afterthought from a mom who wish she pressed harder for answers
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admin
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Re: what to do for my son
Hi- We r living in South Africa. My son has C6-T1 avulsions. It has been 2 years. When I strted looking for help, the only person we have in my country that would help is a handspecialist- no Brachial Plexus dr's- Looking back, as a mother, I would strongly advise you to get BPI specialist info and help- even if need be to move mountains to get your child to one of hospitals recommended on site- as quickly as possible- time VERY NB- pref before 6 mths- In these 2 years things has moved so,o fast, that amputation is like an option out of the middle ages , compared with what is available and in the pipeline! Just an afterthought from a mom who wish she pressed harder for answers
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admin
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Re: what to do for my son
Thank you for your words of experience. Things seem to be happening now. I spoke with Dr. Nath today and my son's MD. I hope to link the 2 up so that they can formulate a plan. Yes, finding someone who specializes in these surgeries is important.
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: what to do for my son
Michele,
Unfortunately nerves are not being re-implanted into the spinal cord in this country. Clinical trials are being started in London, this month, on re-implanting nerves along with Adult Stem Cells from the top of the nasal cavity.
Nerves regenerate at about the same speed that hair grows, one inch a month, so the longer the distance of regeneration the more time the muscles have to atrophy. The place where the nerve connects to the muscle (the muscle plate), where the neural electrical/chemical impulse transfers into muscle contraction, gradually becomes inactive the more time that passes w/out impulse passing thru it. That is why it is very difficult to save hand function once the C8 & T1 nerves are avulsed, because any nerve graft to that area takes too long to regenerate there.
Science isn't there just yet, but I've read a lot of studies that seem to have successfully sped up regeneration process. It just takes too long to get from laboratory to the operation table.
I avulsed C5, C6, & C7, with damage to C8 & T1 and was very lucky that C8 & T1 came back fairly well over time. I now have some hand function, albeit limited, elbow flexion (transferred gracilis muscle from leg to biceps) and deltoid function (more for shoulder stability than any useful movement). My arm is very far from what it used to be, this is a nasty nasty injury, but I think I'm as far off as the available science could take me, and I'm grateful for that!
Where are you located, and when did your son injury take place?
Best of Luck,
Chris
Unfortunately nerves are not being re-implanted into the spinal cord in this country. Clinical trials are being started in London, this month, on re-implanting nerves along with Adult Stem Cells from the top of the nasal cavity.
Nerves regenerate at about the same speed that hair grows, one inch a month, so the longer the distance of regeneration the more time the muscles have to atrophy. The place where the nerve connects to the muscle (the muscle plate), where the neural electrical/chemical impulse transfers into muscle contraction, gradually becomes inactive the more time that passes w/out impulse passing thru it. That is why it is very difficult to save hand function once the C8 & T1 nerves are avulsed, because any nerve graft to that area takes too long to regenerate there.
Science isn't there just yet, but I've read a lot of studies that seem to have successfully sped up regeneration process. It just takes too long to get from laboratory to the operation table.
I avulsed C5, C6, & C7, with damage to C8 & T1 and was very lucky that C8 & T1 came back fairly well over time. I now have some hand function, albeit limited, elbow flexion (transferred gracilis muscle from leg to biceps) and deltoid function (more for shoulder stability than any useful movement). My arm is very far from what it used to be, this is a nasty nasty injury, but I think I'm as far off as the available science could take me, and I'm grateful for that!
Where are you located, and when did your son injury take place?
Best of Luck,
Chris
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Re: what to do for my son
Thank you for all of the information. I'm in Arizona and the accident occurred in Oregon. I've been in contact with Dr. Nath who is in Houston. He is more optimistic than the local neurosurgeon who would only work on the C7. We're just trying to evaluate all of Sam's options. If the doctors and researchers experienced what others have with this injury, there would be great speed in developing effective treatments and addressing pain, I'm certain.
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Re: what to do for my son
Iam sorry about your son and his accident. I had c8 and t1 avulsions and damage to c5 and c6 and to c7. I had surgery at the mayo clinic in july of 2005 and have had great results. I would be available to answer any questions you might have or even guide you in the right direction, as others did for me to eventually get me to go to the mayo clinic. 914 557 8536
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Re: what to do for my son
Thank you Brian...I will call you today. It's too early right now. My cell number is 928-699-2289. I'm in Arizona. I'd love to hear your story. I think my son will have surgery with Dr Nath in Houston if all goes well with insurance et al. I look forward to talking with you...Michele