I've read most of all the postings here on Brachial Plexus injuries but has anyone here been diagnosed with it who has not suffered an injury?
I hurt my neck (Rupture at C7 & Compression at C4) almost 11 months ago lifting weights and about the same time, started suffering with horrific shoulder pain that started in my left shoulder but transfered to the right over a two week period that quickly started atrophing. I have no shoulder muscle at all now and limited movement.
After seeing a Dr and going through MANY tests, I found the neck problem has nothing to do with the shoulder problem. I just saw my second Neuro Surgeon and he confirms what the first one says. Other than hurting my neck, I've had no injuries.
I just went through an MRI on Thursday and from what the Dr said, I guess they are looking for a mass behind my collar bone. Next they plan to do the EMG. Has anyone had that test and if so, what is it like?
I feel for you all, the pain is sometimes more then I can take so I do totally understand what you all are saying. I wouldn't wish this on anyone!
Any words of wisdom or advice is appreciated. I'm a newbie at this.
Thanks, Debi
I'm being diagnosed this week
Re: I'm being diagnosed this week
Debi-
I believe there are several people here who have BPI that are viral in nature, rather than due to injury. You can probably do a search of "virus" and pick up some posts from them.
An EMG is part of the typical testing. I won't explain the actual science behind it well, so I'll leave that to someone else, but as for what you will actually experience...in my husband's case there have always been two phases. The first is involves sending a short shock through the muscles affected and seeing if it can be "picked up" by the wires patched to your arm near the other end of the muscle. The second involves inserting needles into the muscles and seeing what type of activity can be picked up- which tells them whether your nerves are able to "send messages" to the muscles. They sometimes ask you to try to flex muscles during this and may also give a few more shockes. I'll be honest, my husband's first test was quite painful. We're not sure if that was due to the person doing it, or because he was generally in so much pain everywhere at that point. They have gotten progressively easier and are only mildly unpleasant at this point. Best of luck to you- you have come to the right place. The knowledge of this community is invaluable, especially at the beginning when so much is overwhelming.
I believe there are several people here who have BPI that are viral in nature, rather than due to injury. You can probably do a search of "virus" and pick up some posts from them.
An EMG is part of the typical testing. I won't explain the actual science behind it well, so I'll leave that to someone else, but as for what you will actually experience...in my husband's case there have always been two phases. The first is involves sending a short shock through the muscles affected and seeing if it can be "picked up" by the wires patched to your arm near the other end of the muscle. The second involves inserting needles into the muscles and seeing what type of activity can be picked up- which tells them whether your nerves are able to "send messages" to the muscles. They sometimes ask you to try to flex muscles during this and may also give a few more shockes. I'll be honest, my husband's first test was quite painful. We're not sure if that was due to the person doing it, or because he was generally in so much pain everywhere at that point. They have gotten progressively easier and are only mildly unpleasant at this point. Best of luck to you- you have come to the right place. The knowledge of this community is invaluable, especially at the beginning when so much is overwhelming.
Re: I'm being diagnosed this week
Hello Debi-
One thing I remember reading long ago about this type of injury is that one of the few physical things you can do that will cause a BPI is extreme physical exertion. The examples given on the website included soldiers who have to walk for long distances with heavy backpacks across their shoulders, and gymnasts who sometimes practice too long on extreme strength moves. You mentioned lifting weights- Doctors are quick to rule out things they may not have heard much about.
Another thing I saw out here in the internet were studies that dealt with the effectiveness of the usual means of doing EMG test to determine the source of nerve problems associated with this sort of injury. If you Google Brachial Plexus and EMG test, you may find them too. What I recall is that unless you get the test fairly quickly after the injury, it will probably not show much.
I had two EMG tests. One for my original loss in my right hand was inconclusive because the nerve involved was too deep in the forearm and there were other nerves closer to the surface that clouded the nerve response. The other one I had was after my right shoulder went through a similar problem as you described. For this one the Doctor could find no nerve damage, and concluded that that meant I had a muscle disease, even though the same test done by the same doctor also showed I had a muscle response in my shoulder. The problem is that most doctors are not aware of the way to do a test for this type of nerve issue, or that by the time they get involved to do the test, so much time has passed that the nerve has already moved to the next stage- or the test is muddied by other nerves trying to do the conduction.
I have had two instances of this. The first in 2000 involved my right index finger and thumb. That started with sharp pain in my shoulder. I do not know how many times I described the start as sharp pain in my shoulder. No one listened. I lost use of my thumb and index finger. After two years, the index finger pretty much came back, and is close to normal. The thumb took almost three years longer to even get any movement. I have pretty good movement now, but almost zero strength. At this point, I guess I have gotten as good as I will get with the first experience. The cause of this was never diagnosed back then.
In 2006, I started to feel a bit sluggish as far as my right shoulder was concerned. It did not hurt, but I could tell it was not right. Then the pain hit again. It was in the exact same spot as the 2000 incident. After this subsided, it took about three weeks before my scapula lost it and began to “wing”. My right arm, which had never been as strong as it had been prior to the 2000 incident, lost even more strength, but it took a number of months. Even after this pain went away, I could still do more than 20 pushups- after not really doing any in many years. A few months later, I could not even do one pushup. Now, I still can only do a few, and they are not standard.
Everything about this takes time to heal. It takes time to lose what you will lose, and to regain what you will regain. The longer it takes to get it back, the less chance you will have of getting it back.
The cause for mine was found by me on the internet. I determined I had Brachial Plexus Neuritis. I found that this would have explained both of my occurrences of problems. The doctors did not listen. They sent me to a specialist to verify I had muscular dystrophy. That doctor laughed at them, and then told me I was correct. The cause is still undetermined. They think it is a virus. I do not remember being sick either time. There are other possible causes, but all of them are pretty rare in occurrence.
This is too long already.
Oh, I also have neck pain that they say in unrelated to any of this.
Richard
One thing I remember reading long ago about this type of injury is that one of the few physical things you can do that will cause a BPI is extreme physical exertion. The examples given on the website included soldiers who have to walk for long distances with heavy backpacks across their shoulders, and gymnasts who sometimes practice too long on extreme strength moves. You mentioned lifting weights- Doctors are quick to rule out things they may not have heard much about.
Another thing I saw out here in the internet were studies that dealt with the effectiveness of the usual means of doing EMG test to determine the source of nerve problems associated with this sort of injury. If you Google Brachial Plexus and EMG test, you may find them too. What I recall is that unless you get the test fairly quickly after the injury, it will probably not show much.
I had two EMG tests. One for my original loss in my right hand was inconclusive because the nerve involved was too deep in the forearm and there were other nerves closer to the surface that clouded the nerve response. The other one I had was after my right shoulder went through a similar problem as you described. For this one the Doctor could find no nerve damage, and concluded that that meant I had a muscle disease, even though the same test done by the same doctor also showed I had a muscle response in my shoulder. The problem is that most doctors are not aware of the way to do a test for this type of nerve issue, or that by the time they get involved to do the test, so much time has passed that the nerve has already moved to the next stage- or the test is muddied by other nerves trying to do the conduction.
I have had two instances of this. The first in 2000 involved my right index finger and thumb. That started with sharp pain in my shoulder. I do not know how many times I described the start as sharp pain in my shoulder. No one listened. I lost use of my thumb and index finger. After two years, the index finger pretty much came back, and is close to normal. The thumb took almost three years longer to even get any movement. I have pretty good movement now, but almost zero strength. At this point, I guess I have gotten as good as I will get with the first experience. The cause of this was never diagnosed back then.
In 2006, I started to feel a bit sluggish as far as my right shoulder was concerned. It did not hurt, but I could tell it was not right. Then the pain hit again. It was in the exact same spot as the 2000 incident. After this subsided, it took about three weeks before my scapula lost it and began to “wing”. My right arm, which had never been as strong as it had been prior to the 2000 incident, lost even more strength, but it took a number of months. Even after this pain went away, I could still do more than 20 pushups- after not really doing any in many years. A few months later, I could not even do one pushup. Now, I still can only do a few, and they are not standard.
Everything about this takes time to heal. It takes time to lose what you will lose, and to regain what you will regain. The longer it takes to get it back, the less chance you will have of getting it back.
The cause for mine was found by me on the internet. I determined I had Brachial Plexus Neuritis. I found that this would have explained both of my occurrences of problems. The doctors did not listen. They sent me to a specialist to verify I had muscular dystrophy. That doctor laughed at them, and then told me I was correct. The cause is still undetermined. They think it is a virus. I do not remember being sick either time. There are other possible causes, but all of them are pretty rare in occurrence.
This is too long already.
Oh, I also have neck pain that they say in unrelated to any of this.
Richard
Good Luck!!!
Richard
Richard
Re: I'm being diagnosed this week
Debie, my injury occurred after a cervical fusion in the same area as you stated your injury occurred. I believe that yes, your injury has tons to do with your problem in your shoulder. I woke from surgery unable to move my left arm at all, (August 08) and haven't been able to move it since then. The nerves in that area are so complex that it's hard to imagine the correlation. The pain was unbearable for about six weeks and now it has reached a point of barely tolerable, but at least it's not that excruciating pain I had at first. Please keep me posted as to what your doctors find. You'll find such an enormous amount of information on this site. I wish you the very best. This is absolutely a unique crowd you've joined (unfortunately). I'm very sorry for your injury. If I can help in any way just give me a call. Also Rachel in Nashville might know of a doctor for you. I'll find her e-mail address for you. Good Luck Suzanne Sommer
Re: I'm being diagnosed this week
Thanks Suzanne. So sorry you too have this problem. Sounds like yours is even worse then mine. I can move my arm but it is limited. From my elbow down works well. From all I've read what worries me is that it can strike again and be even worse then it already is. My surgeon wants to fuse my neck because of all the problems but is waiting on the other surgeon to tell him exactly what it is I have. Now if trauma can bring on another attack, will that surgery start it??? Who knows huh? This is all very frustrating. Thanks so much for your kind words.
Debi
Debi
Re: I'm being diagnosed this week
Richard, I feel for you. Sounds like you tried to keep working out like I did but it made me worse. I couldn't do a push up right now if my life depended on it : ) Both my arms are incredibly weak.I wish you the best! Debi
Re: I'm being diagnosed this week
You may only be a bit worse in the short term. Do not give up with trying for the long term. For my case, I think the doctors do not have a good understanding of the progression of the weakness, or how it impacts both sides. I think if I had not been trying to get things back, I may actually be in worse shape now. It is interesting that I feel weakness in both right and left sides. The "wisdom" of those who know suggests this only impacts one side, and if you have problems on both sides, it is due to over-compensation of the other non-impacted side trying to make up for the loss on the impacted side. I get that this may be true to some extent, but the weakness I feel on my left side is to the same muscle groups as are impacted on my right. Or at least that is how it seems to me. Who knows? Maybe I do have muscular dystrophy. Although, I think it is more likely my cause will turn out being the genetic version of the Brachial Plexus Neuritis.
> Richard, I feel for you. Sounds like you tried to
> keep working out like I did but it made me worse. I
> couldn't do a push up right now if my life depended
> on it : ) Both my arms are incredibly weak.I wish you
> the best! Debi
> Richard, I feel for you. Sounds like you tried to
> keep working out like I did but it made me worse. I
> couldn't do a push up right now if my life depended
> on it : ) Both my arms are incredibly weak.I wish you
> the best! Debi
Good Luck!!!
Richard
Richard
Re: I'm being diagnosed this week
The Neuro surgeon says my left arm weakness is due to my neck problem. He says if he fuses my neck, the weakness will go away. Who knows?? I KNOW I'm worse because I kept trying to do shoulders and arms with free weights. I thought I could rebuild them, no one told me once your muscle is gone... its gone! So I strained my neck even more compensating for the lack of strength in my shoulders. My fault!! I was clueless. I haven't been working out at all for about 6 months now. As soon as they decide if I have the genetic version of the diease, I guess they will decide if they can do surgery, although one post on this forum said theirs started from the surgery. I pray you don't have MD...
Re: I'm being diagnosed this week
Have you had an MRI of your neck?
I guess in non-trauma versions of this, the cause is the hardest thing to nail down. If I have MD, I am an odd case due to my age at onset. MD should have been obvious from a much younger age than I was. But the same thing goes for the genetic cause. Usually, you would know about this because someone else in your immediate family would also have it. In my case, those who would be able to shed light on this have died. All I have is anecdotal evidence. I know my father had tendonitis a number of times in his shoulders, and he was told by a chiropractor once that he may have a pinched nerve in his neck. I know my father had a very similar build when younger as I had, so our body types were pretty close. I know my great grandfather and great-great grandfather were said to have survived polio with only slight loss of abilities. Back then, I am not sure they would have known how to differentiate polio and BPN- They barely knew about polio. So, maybe in my case, there is a chance it is hereditary. I should get the test just to know for sure. But, I also know that if I did that, it would not suggest any new course of treatment for me. All I can do is try to keep moving the best I can, and hope that it does not knock me totally down when it recurs for the third time- which it will do, and to hope that I have prednisone handy when I feel any recurrence in the future. The theory is that this can help mediate the symptoms and keep loss to a minimum.
Fusing your neck may be the way to go, but I would ask for second or third opinion. There is no going back on that. Fusing vertebrae is easy for a surgeon, and surgeons will always say to do the easy fix. But, it may not be the only fix. My original Doctor, a Surgeon, also came up with a fix that involved surgery for my original hand problem. ("You are too ald for any of this to resolve on its own") It would have transferred tendons that work to sections of my hand that did not work. It is true, I may have gotten full return of my loss at the time, but there was no guarantee. And the few similar operations I knew of that he had done had not been successful. So I turned it down. Eventually, my hand almost came back to full function on its own. If I had the surgery, who knows?
Good Luck with this. I know it is hard to think about, and deal with the pain. And so few people understand what it can be like-
Richard
> The Neuro surgeon says my left arm weakness is due to
> my neck problem. He says if he fuses my neck, the
> weakness will go away. Who knows?? I KNOW I'm worse
> because I kept trying to do shoulders and arms with
> free weights. I thought I could rebuild them, no one
> told me once your muscle is gone... its gone! So I
> strained my neck even more compensating for the lack
> of strength in my shoulders. My fault!! I was
> clueless. I haven't been working out at all for about
> 6 months now. As soon as they decide if I have the
> genetic version of the diease, I guess they will
> decide if they can do surgery, although one post on
> this forum said theirs started from the surgery. I
> pray you don't have MD...
I guess in non-trauma versions of this, the cause is the hardest thing to nail down. If I have MD, I am an odd case due to my age at onset. MD should have been obvious from a much younger age than I was. But the same thing goes for the genetic cause. Usually, you would know about this because someone else in your immediate family would also have it. In my case, those who would be able to shed light on this have died. All I have is anecdotal evidence. I know my father had tendonitis a number of times in his shoulders, and he was told by a chiropractor once that he may have a pinched nerve in his neck. I know my father had a very similar build when younger as I had, so our body types were pretty close. I know my great grandfather and great-great grandfather were said to have survived polio with only slight loss of abilities. Back then, I am not sure they would have known how to differentiate polio and BPN- They barely knew about polio. So, maybe in my case, there is a chance it is hereditary. I should get the test just to know for sure. But, I also know that if I did that, it would not suggest any new course of treatment for me. All I can do is try to keep moving the best I can, and hope that it does not knock me totally down when it recurs for the third time- which it will do, and to hope that I have prednisone handy when I feel any recurrence in the future. The theory is that this can help mediate the symptoms and keep loss to a minimum.
Fusing your neck may be the way to go, but I would ask for second or third opinion. There is no going back on that. Fusing vertebrae is easy for a surgeon, and surgeons will always say to do the easy fix. But, it may not be the only fix. My original Doctor, a Surgeon, also came up with a fix that involved surgery for my original hand problem. ("You are too ald for any of this to resolve on its own") It would have transferred tendons that work to sections of my hand that did not work. It is true, I may have gotten full return of my loss at the time, but there was no guarantee. And the few similar operations I knew of that he had done had not been successful. So I turned it down. Eventually, my hand almost came back to full function on its own. If I had the surgery, who knows?
Good Luck with this. I know it is hard to think about, and deal with the pain. And so few people understand what it can be like-
Richard
> The Neuro surgeon says my left arm weakness is due to
> my neck problem. He says if he fuses my neck, the
> weakness will go away. Who knows?? I KNOW I'm worse
> because I kept trying to do shoulders and arms with
> free weights. I thought I could rebuild them, no one
> told me once your muscle is gone... its gone! So I
> strained my neck even more compensating for the lack
> of strength in my shoulders. My fault!! I was
> clueless. I haven't been working out at all for about
> 6 months now. As soon as they decide if I have the
> genetic version of the diease, I guess they will
> decide if they can do surgery, although one post on
> this forum said theirs started from the surgery. I
> pray you don't have MD...
Good Luck!!!
Richard
Richard
Re: I'm being diagnosed this week
Yes, I did have an MRI of the neck and that is when I was diagnosed with the ruptured disk and compressed disk. I also have from c4 up my vertebras face the right and from C5 down they face the left. Another bit of info, I have a benign cyst growing off the spinal cord. Ugh.... none of it sounds good.
They also did an MRI of my collar bone area to rule out a mass compressing on the nerves in my back..which they did rule out.
I don't even want to believe this can all happen again. That attack was horrible and lasted for months. The pain was almost more than I could bare at times and I still had to go and work 12 hrs a day. I pray it does not come back.
I am waiting on my genetic tests to come in. You should have the test and find out for positive sure if this is what you have. At least you could rule out MD.
I have a cousin who was recently diagnosed with Chronic Inflammatory Demilenating Polyneurophy. She's in her 40s and it is making her legs atropy. She has just started chemo treatments to help her. I don't know if that is similiar or what but I plan to tell my surgeon when I see him again.
Let me know how it goes for you. I wish you the best.
Debi
They also did an MRI of my collar bone area to rule out a mass compressing on the nerves in my back..which they did rule out.
I don't even want to believe this can all happen again. That attack was horrible and lasted for months. The pain was almost more than I could bare at times and I still had to go and work 12 hrs a day. I pray it does not come back.
I am waiting on my genetic tests to come in. You should have the test and find out for positive sure if this is what you have. At least you could rule out MD.
I have a cousin who was recently diagnosed with Chronic Inflammatory Demilenating Polyneurophy. She's in her 40s and it is making her legs atropy. She has just started chemo treatments to help her. I don't know if that is similiar or what but I plan to tell my surgeon when I see him again.
Let me know how it goes for you. I wish you the best.
Debi