United Brachial Plexus Network, Inc.

I posted this on the General Message Board and was told by a kind responder it might fit better here. Thanks for any advice or support.

Hi, I have been dx'd with brachial plexitis, mostly involving right shoulder/arm. I have been undergoing tests re a dropped shoulder and trapezius injury on that side, so thought the pain and tingling/numbness, heavy arm etc. were related to that. Had MRI that showed no cervical spine problems or tumors, but was done without contrast so was not helpful to check out inflamation. Saw neuro for 1st time yesterday, thought I was getting EMG/nerve conduction study, but was consult only, EMG now sheduled for Mar 11. However, neuro doc said pain, numbness/tingling, etc was NOT related to trap injury and drooping shoulder, as deltoids are weak as well as hand and last three fingers, says trap injury wd not affect this area, nor would thoracic outlet or other type symptoms come on so fast(Have had numbness/tingling abt 3 weeks, pain for 2 and a few days) He dx'd brachial plexitis, said it usually comes on following an infection and asked if I had been sick, cold, virus, etc. I had not had any recent illness or fever. Left confused, how cd these not be connected - the shoulder/trap issue and the inflamation. Then thought back, only other event to that shoulder recently was tetanus shot on Feb. 3.
Looked up tetanus side effects at CDC website and under severe effects was "deep, aching pain and muscle wasting in upper arm(s). This starts 2 days to 4 weeks after the shot and may last for months". Other web sites made reference to brachial plexus neuropathies, peripheral neuropathy, demyelinating neuropathy and Guillain-Barre syndrome. How do I sort out what may be happening? How do I approach this with the docs? Have not talked to them re the tetanus shot as they are not in til Monday now. Help, I really need advice!

BTW: Have screaming, burning pecs, ditto below right collar bone (and some of both on left as well)scalenes painful, arm radiates from shoulder to wrist, esp. elbow, numb, cold fingers (last three) and cold sweaty palm. Cannot carry anything without discomfort, reaching up or across body esp. painful, cannot hold arm out to side longer than 20-30 seconds. Am really
worried abt residual muscle damage, and without EMG, still don't know if there is also nerve/vascular impingement from dropped shoulder. Am currently on Vicodin, skelaxin and Neproxin, just added Neurontin at bedtime(have been sleeping 4 hrs the last week or so - til the Vicodin wears off!) and a prednisone steroid - 8 day pack - to try for pain relief. This has been such a hard thing to come to grips with as I am normally very healthy - hadn't been to a doc in yrs
other than work physicals, and have 2 children. I teach preschool- hard to do when you hurt or are groggy from meds. I am 41 years old. Thanks again.

Beth

Hi Beth, me again!
Those papers by Dr Kline et al are as follows
Gentilli, F., Hudson, A. and Kline, D.G.: Peripheral nerve injection injury. NEUROSURGERY 4:244-253, 1979.

Gentilli, F., Hudson, A.R., Kline, D.G., Gilbert, R. and Hunter, D.: Injection injuries of peripheral nerves - An Experimental study. ANNALS OF ROYAL COLLEGE OF PHYSICIANS AND SURGEONS OF CANADA, pp. 67, 1979.

Whether you could obtain copies is something I don't know, you can ask at your local library. Otherwise I also have a case study from the internet of a woman police officer who got a similar injury following a flu shot

http://daffodil.uthscsa.edu/faculty/dum ... mpain.html
Probably different nerves affected but it does give a treatment plan, I note they gave her excercises to make sure the muscles didn't get contractures which would leave her with disability even after the nerves recovered. Contractures are avoided by stretching exercises but it is best to see a specialist physio (PT) to work out your programme of exercises-this is VERY important! The recovery may take a long time and the muscles contract quite quickly.
Hopefully others with similar problems will post too, in the meantime look after yourself-you'll find parenting will give you plenty of opportunities to stretch those muscles!

Hi Beth

I am so sorry to hear about your terrible pain.

This is a list of hospitals and resources perhaps you can get someone near you who specializes in tbpi...

The most important thing for you is to get immediate help...

this is the list from our resource page
http://ubpn.org/weblinks/index.php? ... tal/Doctor

I am birth injured and I cannot stand any heat on my bpi side .... I get a great deal of pain from ice... so please try some heat and see if that helps then try some ice...

I hope you get some relief soon
keep us posted
Kath

you know kathleen- it's funny that you said that about heat and ice.... my right side with the loves the heat...my left side loves the ice..... fickle eh?

Thanks for the replies. Have to talk with the doctors today re the tetanus reaction - don't know what their reaction will be but found lots of citations associating DTP, DTaP and Td(adult form) with brachial neuritis and GBS, as well as other nasties. Am hoping I can get EMG moved up sooner, want to know how much involvement we're talking about. Today is one month since I recieved shot. Wish me luck!

BethJ

By some miracle there was a cancellation yesterday and I got to go in for my EMG. Tests show mild nerve damage in several muscle groups in my arm, neuro says shd be good recovery with a couple months of PT. Will have to wait and see, but hope he is right. Tetanus issue was really not mentioned. He is more concerned now with trapezius muscle, says it is more of a chronic injury. He did not say, but I think is traction injury, from carrying heavy bags of school books and supplies. Don't know yet extent of damage to spinal accessory nerve, does anyone know consequences/likely treatment or recovery with significant damage to trapezius/spinal accessory? Am to see physiatrist Mar. 20 to begin looking at rehab options, what shd I expect? Thanks for info!

BethJ

hi beth this is chris im sorry to say this but i went thru three neurosurgeons with my tbpi and in my opinon there lucky if they could spell the word nerve i cant understand this of all doctors they know the least about a brachial plexus injury could someone actually explain there field of work to me you are better off to seek out a brachial plexus specialist in your area good luck with this and keep us posted on how your doing and what you find out

Well I'm hanging in there but keep mood-swinging between positive outlook and depression-city. Have been thinking maybe pain is easing off but if I go past time for pain meds arm starts getting real achy and don't want to go back to that 8-9 pain level, so take the meds. Then overdo things and pain comes on even with meds. Want to be as normal as possible, but meds make me groggy and slow, have no energy to do anything in afternoon/evenings, letting housework and schoolwork slide (teach preschool), then feel guilty. Am seeing an orthopedic surgeon Monday, he is someone I know slightly from church, know his wife and kids real well, am hoping he can give me more of a black-and-white picture of my condition, am beginning to hate the color gray!! Then Occupational Therapist on Tuesday to look at ulnar nerve at elbow, is so irritated I cannot rest forearm on anything comfortably, even in bed. Then see physiatrist March 20 to work on rehabbing trapezius - just hope does not recommend surgery. Have GP followup on Mar 27, then back to neuro Apr. 3. Sure hope I get some answers/improvement out of all of this! See a neuromuscular massage therapist 1x a wk, and started taking multivitamin, calcium and Omega-3 fish oil gel caps. If I get ok from doc (which one?), am thinking abt yoga to help with relaxation and gentle stretching.
Any other ideas? How do you stay upbeat when this thing keeps knocking you back down? Am sick and tired of feeling sick and tired!

Beth,

I just had (am having) a similar situation. Had a normal Tetanus Booster, then three days later, I got aching and burning pain in the same arm where I had the injection on the upper inside of the arm. Then a few days later, upper arm pain on the right side. I still have it (it's now about two weeks). Sometimes it radiates from under the armpit to just under the breastbone. It seems to be getting better. I mentioned it to my Doctor and he saw me a few days after the pain started, but he attributed it to normal swelling from the Tet. shot itself. But the pain has still gone on, so I've been searching the net. I found the same reference you did about "deep muscle aching and wasting of muscles in upper arms". I faxed the article to the Dr. and he was going to look into it. Right now, mine isn't constant pain, and I can definitely sleep at night without any medication. Also talked to my brother, and he said he had a similar experience about 8 years ago (I never knew about it).

Christie