United Brachial Plexus Network, Inc.

Has anyone come across injury of the brachial plexus which is not due to trauma nor child birth? My nephew is 81/2 years old when it happened. We thought he had a fight with his younger brother as a result of which he injured his c5-c7. However, whilst he was undergoing physiotherapy and was not responding too well, we sought second/third/fourth opinions. The alternative view was that it was not due to trauma but viral infection. Regardless, 8 months had passed on during which he had undertaken physiotherapy, hydrotherapy and even acupuncture non-stop. He is prescribed as having 30% improvement but still the movement of his shoulder and upper arm is still very much impaired. We are lost now what to do next. Any help will be much appreciated. By the way, we are based in Hong Kong and pleased to find out about the UBPN.

Try searching "Drake" or "Drake's Mom". His injury is believed to be from the west nile virus, I think. You have found a great place for support and answers.
Sue

Hello,
If you'd like another alternative view on treatment of a virus I'm a naturopathic doctor and could present a few ideas to you. Please send me an email if you're interested.
Cindy

i believe you are the one who emailed me. My son had his appt. with the new neurologist and he explained it very well. Drake has puzzled MANY doctors even the neurologist from Mayo. The neurologist at the Mayo is however the first to tell me she thought it was an anterior horn cell problem. This is Drake's case and i'm not sure this is your nephew's case but this is what the doctor said. Drake's leg was also affected in this whole process so when we went to the Mayo clinic the EMG was done on his arm AND legs to see if there were differences in the legs, because on the outside there are not any noticeable difference on the legs. But the EMG shows slight differences proving that more than just the BP was involved.

The doctor here said there is no way of knowing the extent of the damage done by the virus. But he is sure the damage was done to the anterior horn cells. The difference in the healing is that the nerve cells do not replace themselves. The nerves will regenerate but the cells will not. It cannot be said how many cells were destroyed but in Drake's case it was a lot because he lost function in everything in his right arm. He said the function he is getting back is the other smaller cells around that were not damaged trying to do the work for the lost cells. The outcome is not going to be as good because the cells were not intended to do that job. This explains why so many therapist were stumped as to his recovery. Some things would come back that they thought would be later and he has some movement in areas that they think should keep improving but they aren't, but this is because that particular muscle that is being controlled by new cells that are not sure how to control it properly. He explained it very well to me but i'm not sure if i'm explaining it well enough!!

So this is Just Drake's situation. The virus that he had went deeper than just the peripheral nervous system and damaged the nerve cells. I have known all along that Drake was lucky to get out of this with just 'a less than perfect arm' but now i fell really lucky for him that he could have been completely paralysed everywhere. His leg and neck were just not hit as hard by the virus and i guess since he was so young and healthy he fought it off before it could do anymore damage.

I hope i helped and didn't confuse you more. I would ask the doctors what exactly they think was damaged in your nephew's case. there is a big difference in the peripheral nerves and the nerve cells themselves. I am still learning so i don't want to give you wrong information. I know Marieke is very good with the technical side of this injury once you get more information i would seek her out!

Teresa

Hi

If you do a search and type in "Jordan" or "Parsonage Turner Syndrome" you will see some history. In a nutshell, my son has been diagnosed with a BPI caused by Parsonage Turner Syndrome twice in the past 3 years. The first occured exactly 3 years ago and it affected his left arm---all nerves, complete paralysis and went undiagnosed for 4 months until I found Dr. Kozin at Shriners with the help of this Board. He was also seen by Dr. Nath. He healed 80% in approx 8 months but it took at least another year after that to heal to 100%. We were told that it should not recur and that they have never seen a recurrance. Well, low and behold, in October, 2007 once again he was exposed to some type of virus (not known which one) and within 4 weeks his RIGHT extremity was affected. He has been seeing Dr. Kozin every 6 weeks since December. This time he experienced much pain that he didn't experience with his first occurance. Jordan's case has been the first reported to recur in the opposite arm. It has been 9 months since he was inflicted and he is approx. 85% healed. We have our next appointment (and hopefuly our last) with Dr. Kozin next Friday. The key now is to keep Jordan healthy so he has been taking Viral Stimulators and other Supplements recommended to him by a Naturalist after Muscle Response testing(Mom is on this Board) Dr. Kozin's team did some research and did come up with a rare genetic disorder that can be connected with this. However, because it is so rare (200 family cases reported World Wide) no testing is available or known. Also, I am adopted so I have no family history. Anyway, good luck. If you would like to email me, please do so. I am a world of information on this subject (unfortunately)

After going back and reading this thread I just wanted to mention that Cindy is the Nat Dr. that I took Jordan to. She is wonderful and I REALLY need to schedule another appointment for follow-up

THANKS CINDY!!!

hi there,
my name is joy, i am sossy to hear about your nephew
my son was diagnosed with bpn 6 years ago he also was told that it was viral,he was also told if he was not cured in 5 years he would not be cured at all,
there is no help available to him in this country at all i live in ireland he has got a lot worse this past year
we are hoping to travel to america to see a doctor nath
to see if he can have nerve transplants, but all i can say to you is make sure you are seeing a bpn specialist
i wish your nephew the very best for the future
joy

Hello Worried Parent-

I might keep an open mind about the possibility of trauma- at least for a while. You know the fight happened. Do you remember your nephew being sick prior to this? In my experience, the doctors I have gone to really do not have much of a clue as far as how non-traumatic brachial plexus injuries get started. Maybe your doctors do not think a simple fight with another child is indication of enough trauma to cause this, and they may be right. But, still be open to it. I have been going to various doctors about my non-trauma caused BPN for close to 8 years now, and no one mentioned a possibility of the cause being viral until just recently.

In my opinion, the viral cause is just a “guess.” They do not think your nephew’s fight was enough to cause the condition, so they click off to the next possible cause. They know I did not have trauma to cause my condition, so the virus is the next thing down the list. Oh, you do not remember being sick either? Maybe then you were born with this. That would be extremely rare, so it is probably not the case for you. Do you have any family history of the same condition in blood relatives? No? Well, it was probably a virus. Getting to the cause of non-trauma induced BPN is a mystery to me, and most doctors I have run into.

In my case, I have been attacked twice. I would think that might rule out a virus in my case, and put it more to the genetic version of the condition, but you never know. The first time, I lost use of my thumb and first two fingers of my right hand. It was totally out of the blue. I had had pretty bad arm pain, and could barely lift it. That got better, and I thought I was in the clear. Then one day I realized I could not pick up a pencil. The doctors at that time had no clue it was BPN related. I kept telling them it started in my shoulder and traveled to my hand. They were not interested in how it started.

After 2 years or so, I got back use of my fingers. After around 5 years, I got some movement back in my thumb. The strength to my thumb is still lacking, and overall my arm strength was reduced from prior levels. Looking back now, I see this as a symptom of BPN. At the time, the doctors thought my arm was weak because I was not using it enough. They were wrong.

Two years ago, I got another attack of arm pain. This time it was much more severe than the first time. It took a number of days before I could move my right arm again. The weird thing is that after that, I felt OK. I got back strength initially, even though my shoulder blade was winging and shoulder was not really stable. But after a few months, my strength started to fall off again. And it fell off in both arms even though my attack was to my right. And again, the doctors think my weakness is from lack of use. I admit I am not lifting much with my right arm-hand combination. But I am exercising, and I strength is not returning on either side.

One thing that my last doctor advised and ordered was that I finally get an MRI of my neck, since I still have some neck pain on the right with head aches at times on my left side near my neck. It is that left sided headache that I think may be the reason I am weak on that side too. Once I get the results, I will know for sure. I have only been waiting 6 weeks for the report

Overall, recovery is slow. And it may not be complete to prior levels. But, your nephew is young. He should have a good chance of beating this- ar at least adapting to any permanant loss.
Richard