Brian
You are getting good advice from the replies. I am a therapsit and have just started looking at this web site. There are a great deal of postings from well meaning families, but the information given can be a little off.
In the most severe plexus injuries, surgeons often operate as ealry as possible because they want to get nerve to the muscle prior to muscle loss. Because they know there will be no spontaneous healing of the nerve, there is no reason to wait.
If they are going to do a muscle transfer such as gracilis, it can be done anytime, even many years after the injury such as one person talked about in a response to you.
The most important thing is to get expert advice from doctors who do this work. Every case is different and you cannot assume that someone advising you on these sites knows what is best for your problem.
My own experience includes working with patients who have had complete plexus injuries and good results from surgery. I have seen patients from both of the main groups talked about (Dr. Belzberg at Johns Hopkins and the Mayo/Rodchester) and I think both are excellent with their patients. I have also seen 2 patients who had Dr. Belzberg do the DREZ surgery for pain relief and had an excellent result.
Remember to keep all of the joints in your injured arm moving!
? New to forum and have nerve avulsions of C7-T1
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Re: ? New to forum and have nerve avulsions of C7-T1
Thanks Kim_vtech and Ellen B I would appreciate it if you could call me my # is 1 914 557 8536. It would mean alot to me to discuss our injuries and what is the best path to take and what your doing about your pain. Thanks Brian
Re: ? New to forum and have nerve avulsions of C7-T1
I have nerve avulsions C7-t1 and brachial plexus injury to my right arm. My arm and hand are in incredible pain except when I sleep. Who should I see for surgery and is their any hope for my right arm moving again,( I can flex my bicep and move my arm slightly in water when submersed.)?????
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- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
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Re: ? New to forum and have nerve avulsions of C7-T1
Hi brian! The ability to move in water is due to the boyancy and th eelimination of gravity! it really is amazing the things that I can do in water that I could never think of don on land! haha i do try though! I am going to email you with a few things....
COurt xx
COurt xx
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- 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: ? New to forum and have nerve avulsions of C7-T1
Don't know what happened to my post from yesterday....but I was going to say that waiting so long (a year?) would be a very unusual situation for a tbpi, especially where avulsions are suspected, which in your case you say they are. I know EMG's etc are not reliable but still, a year is too long a wait in my opinion, and it doesn't fit with usual tbpi protocol.
Waiting longer is fairly common in birth injured babies, but in tbpi it's much more usual to go in an do an exploratory at 3 months or sooner if other injuries permit. Dr Nath's main experience is with babies, maybe that's why he suggested a wait. I know you are trying to see other doctors, try and see one whose main specialisation is adult trauma bpi and you might get some clearer answers.
Good luck and let us know how you go :0)
Jen NZ
Waiting longer is fairly common in birth injured babies, but in tbpi it's much more usual to go in an do an exploratory at 3 months or sooner if other injuries permit. Dr Nath's main experience is with babies, maybe that's why he suggested a wait. I know you are trying to see other doctors, try and see one whose main specialisation is adult trauma bpi and you might get some clearer answers.
Good luck and let us know how you go :0)
Jen NZ
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- 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: ? New to forum and have nerve avulsions of C7-T1
hhm just re read your post Brian, it does look as if you might have exploratory sooner than a year, so that ok then......with results from that you'll have a clearer picture of what's needed.
I'll be interested to hear what Dr Spinner says when you see him.
Take care
I'll be interested to hear what Dr Spinner says when you see him.
Take care
Re: ? New to forum and have nerve avulsions of C7-T1
Thanks for all the help everyone has given me, Especially Ellen I hope that the Mayo clinic will be able to give me some more hope and other options for help. I have started to regain bicep movement and today was able to move my wrist in a twisting manner which I know is related to the bicep. I hope that the mayo clinic will be able to do some type of surgery to help me move my hand/fingers again. Iam in incredible pain in my hand so anything would be a plus.
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Re: ? New to forum and have nerve avulsions of C7-T1
Brian
Avulsion injuries are notoriously hard to diagnose, such diagnoses are something of a matter of faith. It was doubt and fear that led me to aggressive surgery. After going through the entire, "hurry before it is too late" game, I will have to say that I wish to God that I would have just let it ride. Maybe I might have had some doubts down the road, but on the other side- I have some serious doubts now. As far as I'm concerned, Nathan is right, remember-- when it comes to surgeons "to a hammer, every problem is a nail" In other words-- "if in doubt--cut."
onepaw
Avulsion injuries are notoriously hard to diagnose, such diagnoses are something of a matter of faith. It was doubt and fear that led me to aggressive surgery. After going through the entire, "hurry before it is too late" game, I will have to say that I wish to God that I would have just let it ride. Maybe I might have had some doubts down the road, but on the other side- I have some serious doubts now. As far as I'm concerned, Nathan is right, remember-- when it comes to surgeons "to a hammer, every problem is a nail" In other words-- "if in doubt--cut."
onepaw
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Re: ? New to forum and have nerve avulsions of C7-T1
Hi Brian,
I am at 5 months post injury for nerve avulsion at C5-7 in the left arm. I have had 4 emgs and the last one showed baby signals coming back. I have seen Dr.Meyer at UAB for my long thoracic nerve injury..wasnt too impressed he was more concerned with my Thoracic Outlet Syndrome I just had surgically treated. Then I went to New Orleans to see Dr.Klein..he was again wait and see and gave me a 50% of full recovery. I sent all my info to Dr.Nath who told me he tended to more aggressive with severe winging scapula like I have. I have been told due to the car wreck scar tissue has compressed this long thoracic nerve and other nerves making my emg look like an avulsion but the emg is showing a strech injury now due to the baby signals coming back. Dr.Nath is the only doctor that spoke to me like a human and not some moron...like the other doctors. I have LTN decompression schedule with Dr.Nath on May 13th. His staff is very sweet and avaliable at all times as well as Dr.Nath himself.You can count on a return email or phonecall within hours. This says a lot to me. My pain is pretty severe and I am desperate for relief...but what i want is just as you do my function of my arm back and Dr.Nath with the info he has gathered from me guarentees some improvement..that has made me decide to use him. Someone told you that Dr.Nath specializes in children mainly but I dont find that true..He specializes in all BPI problems for adults and children..His LTN decompression surgery has helped nearly 100 people..his telling you removing scar tissue is true. I had a cervical rib removed last year and the accident also caused scar tissue to adheare to my brachial plexus as well so I will have to have that removed by a vascular surgeon in the near future..My point is it makes perfect sense that scar tissue adhearing to any nerve will cause problems and removing that scar tissue can only help while the body can then heal on its own without the difficulty of the scar adhesions...understand??? i HAVE JUST BEEN THRUOUH ABOUT 12 DOCTORS NEUROSURGEONS AND 3BPI SPECIALISTS AND DR.NATH MAKES MORE SENSE TO ME SO FAR...JUST MY TWO CENTS...GOOD LUCK..ILL POST MY SURGERY RESULTS AFTER MAY 13TH SOMETIME...AMELIA
I am at 5 months post injury for nerve avulsion at C5-7 in the left arm. I have had 4 emgs and the last one showed baby signals coming back. I have seen Dr.Meyer at UAB for my long thoracic nerve injury..wasnt too impressed he was more concerned with my Thoracic Outlet Syndrome I just had surgically treated. Then I went to New Orleans to see Dr.Klein..he was again wait and see and gave me a 50% of full recovery. I sent all my info to Dr.Nath who told me he tended to more aggressive with severe winging scapula like I have. I have been told due to the car wreck scar tissue has compressed this long thoracic nerve and other nerves making my emg look like an avulsion but the emg is showing a strech injury now due to the baby signals coming back. Dr.Nath is the only doctor that spoke to me like a human and not some moron...like the other doctors. I have LTN decompression schedule with Dr.Nath on May 13th. His staff is very sweet and avaliable at all times as well as Dr.Nath himself.You can count on a return email or phonecall within hours. This says a lot to me. My pain is pretty severe and I am desperate for relief...but what i want is just as you do my function of my arm back and Dr.Nath with the info he has gathered from me guarentees some improvement..that has made me decide to use him. Someone told you that Dr.Nath specializes in children mainly but I dont find that true..He specializes in all BPI problems for adults and children..His LTN decompression surgery has helped nearly 100 people..his telling you removing scar tissue is true. I had a cervical rib removed last year and the accident also caused scar tissue to adheare to my brachial plexus as well so I will have to have that removed by a vascular surgeon in the near future..My point is it makes perfect sense that scar tissue adhearing to any nerve will cause problems and removing that scar tissue can only help while the body can then heal on its own without the difficulty of the scar adhesions...understand??? i HAVE JUST BEEN THRUOUH ABOUT 12 DOCTORS NEUROSURGEONS AND 3BPI SPECIALISTS AND DR.NATH MAKES MORE SENSE TO ME SO FAR...JUST MY TWO CENTS...GOOD LUCK..ILL POST MY SURGERY RESULTS AFTER MAY 13TH SOMETIME...AMELIA
Re: ? New to forum and have nerve avulsions of C7-T1
Brian,
How did your doctor visit go last week?
Thanks,
Ellen
How did your doctor visit go last week?
Thanks,
Ellen