United Brachial Plexus Network

I am desperately looking for some help. This whole nightmare started three years ago I started getting tightness in my throat and then a burning in my chest. They tightness went away but the burning in my chest got worse. It’s was not due to reflux (Not going into all the tests and things I went through to determine that) but burning was between c4-t1 right dab I the middle of my chest.. I tried acupuncture, massages, and various drugs. The pain was there for about 9 months then last July 2011 I started to have the burning pain in both chest and upper back. Within 1 month the pain moved into my upper back and shoulder area. It’s bilateral. I have gone for blood test, scan, and spinal tap. I do have a medium size herniation in my thoracic spin but its T6-t7 which wouldn’t cause the burning in the area I am experiencing. I found out about a special MRI they do down at John Hopkins called an MRN.

http://www.hopkinsradiology.org/Musculo ... eurography


I got the results back and most everything was normal except something on the brachial plexus:

Findings:

Bilateral Brachial Plexus nerve roots appear diffusely hyperintense with asymmetrical prominence of the bilateral C8 nerve root at the lower interscalene triangle just before trunk formation

I spoke to the Doctor who read the report and he said I defiantly have a Neuropathy in my C8 nerve root as the nerve root appeared very bright on the MRN which in his words is a sign that the nerve is inflamed or damaged. He said it wasn’t TOS as everything looked good in my back.
I know that the tightness in my throat, burning in my chest, and now burning in my back is all nerve related.
I spoke to a few doctors about the findings of the MRN and they dismissed it, saying that MRI doesn’t mean that your Brachial Plexus is the cause the burning in your upper back/shoulders. They also told me I would be getting symptoms in my arms and hands. I am scratching my head. I mean, My pain is bilateral, and its in the general area. My pain goes from C6-c8 and its symmetrical. I didn’t sustain an injury. I don’t have any muscle weakness. No pins and needs. I dont have any sweeling or skin color changes. Normal EMG. But what I do have is this God forsaken Burning/Allodinya. I tried looking up Neurological disorders involving the Brachial Plexus and came up with Parsonage-Turner syndrome but that doesn’t fit my symptoms.

My diagnosis right now is Idiopathic Small Fiber Neuropathy.
Is there possible a nerve block for the Brachial Pleuxs? I already tried Epidurals in my C and T Spine, tried IV Steriods, and tried lyrica, Namenda, and Cymbalta. I am hoping someone might offer me some clues.

make an appointment with a brachial plexus specialist. NOT a neurologist or neurosurgeon. with my BPI, i had a nerve block called stellate ganglion block. it worked very well for me. but you really need to have a BPI specialist to evaluate it. good luck and hope you get some relief soon

I looked someone up who was supposed to be a specialist in BP. Dr. Scott Wolfe.

http://www.hss.edu/physicians_wolfe-scott.asp

I sent my medical records over and an explanation of my symptoms and his office said he couldn’t help me and referred me to a pain management dr, (Which I already have).


IS there a doctor anyone could recommend in New York?

Also, was your problem strictly a sensory issue or did you have muscle and or nerve impingmenet?

.

try contacting the mayo clinic. or dr mackinnon in st louis missouri . or dr armenta in houston texas all can be found on google. unfortunately, you more than likely will need to travel a ways to get the proper treatment. there are many more, but those are the ones that come to the top of my head that i know about. good luck.

Thanks for the info. I anm trying to find out I there is someone else like me that has my symptoms without trauma or muscle weakness. You didnt mention what you BP issue was?

Bent98,
I would listen to jmar's advice in regards to the Stellate Ganglion Nerve Block (also read his/her profile description in the sidebar to see his injury/history).

I've done my fair share of research in the pain department and have tried a pharmacy's worth of meds and multiple nerve block attempts. My injury is of a different nature than what you have, but some of the same science applies.

Thoracic Outlet Syndrome comes to mind from what you are describing (but you have no pins & needles, numbness, or weakness so that may rule that out). Also Complex regional pain syndrome (CRPS), but as you mentioned, no swelling or discoloration.

I congratulate you on getting an MR Neurography done at Johns Hopkins. Many neurosurgeons aren't even that proactive. I interviewed many (10 years ago) that thought the imaging was bunk.

Why not go back to Johns Hopkins and see Dr Allan Belzberg? He specializes in BPI (Brachial Plexus Injury) and neuro-pain.

http://www.hopkinsmedicine.org/neurolog ... n_Belzberg

http://www.hopkinsmedicine.org/neurolog ... y_bpi.html

I've seen Dr Scott Wolfe at Hospital for Special Surgery and he's great, but it is understandable that he would refer your case elsewhere since he deals with reconstructive repair (as does Belzberg).

Best of Luck,
Christopher

read this thread:
http://ubpn.org/forum/viewtopic.php?f=1 ... on#p339923