United Brachial Plexus Network, Inc.

I have been diagnosed with Brachial Plexus Neuritis and am in search of a doctor either in the Cleveland Clinic (OH) or John Hopkins (MD). I would like to hear good or bad stories. I have severe damage to my median and radial nerves with very little regeneration. I have unbearable pain and am unable to lift my arm and have no use of my index finger. My doctors are out of suggestions for me so I feel I need to move on since it's been a year. I realize the Mayo clinic would be the best choice but, because of the distance, I would not be able to frequent there. Any help is appreciated!

Doctors Drive me, Crazy
When a Doctor say they are out of sugestion , the time to ask your doctor to give you a reffeal to a BPI specalist , at one of these hospitals you found . Period
Put it on your doctor to get the refferal that might help your injurys.
Get a referal to a doctor who will help you with pain and If you can get theropy as you can , do it , Water theropy is great to help pain to
There is Sooo many post of lack of dection to get a reffearl to a BPI specalist
It Crazy to, I never was told of any treatment or sugurys in my 63 life with birth erbs.
Pushing a doctor for needed refferal is on the doctor to do. Lack of Derction from a treating doctor SUCKS,
Tansity to try is you now to , Bug the doctors is a good thing for anxiety to
Lack of dection by doctors or reffeal happen by post here, way to offen
It happen with birth injury and latter in life injury to,
I Hope this might help,


Tom

Thanks for responding Tom. I appreciate any advice I can get. I am truly at my wits end with this but refuse to give up. I feel as though my doctors have written me off. I've had 2 ortho surgeons (who I believe caused the injury due to neglect during surgery, another story), 2 pain management doctors, an upper extreme/hand specialist, a neurologist that referred me to a neurosurgeon and a neurosurgeon that said, "what are you here for, there's nothing I can do for you?" They wanted to cut my chest open 4" and insert a stimulator, which I will NOT do. I have respect for my current pain management doctor and my THERAPIST, who has been there for me from day one addressing my symptoms. My therapist doesn't know anything about the 3 hospitals mentioned above and I am going to take your advice to contact my pain management dr. I have been doing therapy 3 to 4 times a week since 3/18/14 and do not miss. I have also done water therapy and love it. PT has helped and I have within the last 2 months gotten off the morphine, which is a bonus. I have called the 3 hospitals and they want to schedule me for an apt but tey ask who? I don't know. At this point, I feel I need the best or it could prove futile since so much time has gone by.

Thanks for responding Tom. I appreciate any advice I can get. I am truly at my wits end with this but refuse to give up. I feel as though my doctors have written me off. I've had 2 ortho surgeons (who I believe caused the injury due to neglect during surgery, another story), 2 pain management doctors, an upper extreme/hand specialist, a neurologist that referred me to a neurosurgeon and a neurosurgeon that said, "what are you here for, there's nothing I can do for you?" They wanted to cut my chest open 4" and insert a stimulator, which I will NOT do. I have respect for my current pain management doctor and my THERAPIST, who has been there for me from day one addressing my symptoms. My therapist doesn't know anything about the 3 hospitals mentioned above and I am going to take your advice to contact my pain management dr. I have been doing therapy 3 to 4 times a week since 3/18/14 and do not miss. I have also done water therapy and love it. PT has helped and I have within the last 2 months gotten off the morphine, which is a bonus. I have called the 3 hospitals and they want to schedule me for an apt but tey ask who? I don't know. At this point, I feel I need the best or it could prove futile since so much time has gone by.

Time goes by, How true
Could you imagine a life time ware no Doctor help in a life time . No referral no help ever from a birth injury or latter in life injury to from any doctor Many found this sight with out any help or little help by any Doctors in a life time To realize Years latter Doctor suggest little when they could of state new help for these injuries over a life time , and never did and real by post here , not just me. The best advocate is us trying when Doctors offer no help,Lack of need diction??
There is less despair because we try, in-spite of how we try to adapt in-spite of outcome or lack of doctors, help
I hope I fired you up, Tenacity to try,it is better than the despair not to try Really
The caveman with birth erbs with no help ever , and many here post like me to
It tough being us, it real Please get a Doctor for pain, Very important as your Tenacity to find a Doctor to help you going forwards, Some doctor and others posting here,Really do find doctors to help,, by post it real to , Dam, Quest, it true to
I guess it really is better to try than being depress Lack of direction and pain is something to overcome , in-spite of outcome. Its What we do Its us by post
I hope I said this OK??? I have grammar issue.
You are not Home alone, We try to help! Will it help???
Just another try, in-spite of outcome ?? our life no matter when these injuries happen
Please Pain management is a most. Find a doctor to help your limitation is by not giving up, positive outcome happen to, by post to. Dam Quest to do so, it true to
Support is a BIG Hug, Positive outcome are true by many posting here to.
I am truly happy , in other outcomes posting and trying by post, There are many here that Inspire me to try, in-spite of my birth erbs and my only good arm getting Rip up driving a semi after 25 years, my post
Lack of diction, Never We can only try to help by , life time experience by so many post here
We really are in the Twilight-zone trying and lack of diction
We try to move others forwards , just being us trying to help We HOPe by our experience with our limitation , may help ??????? real positive outcomes happen to by Quest, Fact to
I hope this help you ???
Home alone, never Hope of giving a derction to try to get past , what you need?? I hope like all here post,
Doctors , leaving us without needed refferal to a BPI doctor, is
Tick me off , Big Time!!! Period !!
Tom

Blondie Blonde wrote: I realize the Mayo clinic would be the best choice but, because of the distance, I would not be able to frequent there. Any help is appreciated!

Hi Blondie,

I would echo what you just said but with the addition that it would be worth it to at least get your records to them and see if they recommend coming in to them. There are lots of people who have traveled to see them and are happy they did. There just are not many Dr's who are experts with this injury and you might as well get yourself to one of the best teams in the world.

As far as the pain, it can be tough to deal with, there are lots of links and posts on this site and many different ways people deal with it. Would be worth it to do some reading on it, you can search for Christopher's posts, he has done a tremendous amount of research on the subject and lists lots of research.

I avulsed all five of my nerves over 28 years ago and am very familiar with the pain. I am one of the people in the camp that believes you need to get your mind thinking about other things than the pain. I don't take any drugs and never have, not because I don't have the pain, I just focus my mind on other things like doing life. I know it is easier said than done, totally aware of that, I just know from my experience and many others I have spoken to through the years that it is possible.

Happy to talk to you if you want to discuss this in more depth and offer any other help I can.
818-636-8109

Dan

THANKS for this information Dan. I returned a response to you the other day that didn't post obviously (if you're reading this). I'm going to see if this reply will post before I go into another detailed post. Sorry, I'm new to this and appear to be having problems. Thanks, Denise

Hi Denise,
That one posted!
Dan

Thanks all! Your support really does help someone in my position. I did review the resources section where doctors are referred. The doctors listed for PA are on the other side of the state and are listed as neurosurgeons. These doctors are listed, however, there is no indication who made the referral and what type of help was received. I'm still leaning toward the suggestion to send my records to the Mayo clinic to see if there is anything they can do to help me. I spoke with my pain management doctor and ortho surgeon this week and they are researching for me and going to call the Mayo clinic to make a referral. I think they are finally taking me a little more seriously. March 18 will be a year since I've been able to move my arm and finger... not a good day! Yet, I still remain positive. There was a reference to read Christopher's posts. I'm new to this forum and am unsure who Christopher is.... Thank you all again for your support, it's great knowing I'm not alone!!!

Lack of direction ,
The Quest to fined a BPI doctor
Please pick two doctors from list, nearest you.
Call them , or better yet have the doctors call the two doctors to see who they would refer you to near you. Your doctors can send the record to them.
Calling is almost , You do the calling or your doctors your seeing, will,help
Get all the help you can for Pain, it is a life long Quest to do so.-Sorry
Your doing Great!!!
Your trying your best by tenacity, It us , everyone here has a starting point here
Just Thinking
Tom