United Brachial Plexus Network, Inc.

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!

Beth

Hi Beth, how unlucky. I already have a total tbpi of one arm and since I found out about the possible side effects of tetanus shots a while ago I have refused them-the chances are slim, but then so are the chances of tetanus is how I figured it, and I don't trust fate any more than I trust doctor's reassurances-all of us who post here are the victims of 'only a small chance it can happen' and we know IT DOES happen.

Everything I've read about injection induced brachial plexopathies does indicate that they improve and are not permanent, but it would be a good idea to see a bpi specialist anyway, there are undoubtedly protocols for treatment/therapy to maximise your recovery. Dr Kline in Louisiana has written several papers about bpi caused by injections and has been seeing adults with bpi for many years. These injection injuries are rare so it would be a good idea to see someone who knows what's what, there are so many different kinds of brachial plexus injury that it's a good idea to try and find someone who's seen injuries like yours and has had experience treating them. If you check messages on the adult tbpi message board there are several people posting who use this doctor and who might be able to advise you. I don't know who your current doctor is, but at least he is aware of the link between tetantus shots and bpi, so maybe he will be able to advise on treatment once the EMG is done.

I'm sorry this has happened to you and I know from personal experience how frightening a time this is for you. Take care of yourself and seek the help you need, if you aren't happy with the answers you get, seek other opinions. Don't be worried about posting questions here, you'll probably get more responses from the adult trauma bpi message board as this one is used mainly by the parents of birth injured children. You can email most people here by clicking on their name, please feel free to do so if you want to ask anything 'off the board'. Good luck and let us know how things turn out. :0)
Jenny NZ

Beth - I read your post and I am just sitting here shaking my head. My heart goes out to you - I am really sorry this happened to you. Although every person's situation is different I can share with you my own experience of having BP neuritis from pneumonia virus. The thing that absolutely helped the pain the best was heat. I bought those Thermacare stick on patches and that's what I wore as often as I could. When the pain subsided a bit, I also worked my arm as hard as I could tolerate to keep it from atrophying too much. And the 3rd thing I changed was my posture - I am very aware now of how I stand/sit and where my neck and shoulders are. I never took pain killers because I wanted to be 'present' to what my arm was telling me. It's months later now and the neuritis is still present but at a much lesser degree - more tolerable. But I did learn a valuable lesson and I'm keeping up the daily heat, working my arm and postural changes I had to make. Good luck to you. It's important to find a bpi specialist who can help guide you. I hope this goes away SOON!

-francine

Thanks Jenny. Do you know if any of Dr. Kline's papers are online, or how I could get copies? Am trying to stay positive, but my energy has been directed toward the whole trapezius/drooping shoulder issus, now I find I have 2 different issues at the same time, what are the odds of the tetanus-induced brachial plexitis occurring when I'm already having an un-related shoulder problem? It is just so wild!
Am taking your advice and reposting on the adult board - thanks so much!

Beth

Francine, Will check out those patches - have also been told there is a prescription-strength rub containing tylenol that may be helpful. Ice has been helpful when my pecs go into spasm, but relief doesn't last long. I toughed it out without pain meds for a week or so, but couldn't function well with mu children or preschool students, was just too crabby due to pain. And I won't miss work unless I have to, stayed home last Monday because Sunday night was horrific, but all I could do was sit on the couch and worry, and I am determined not to let this get me down, have to keep things as normal as possible for my sanity. Am frustrated with built-in delays to get diagnosis and treatment - and have contemplated going to ER when pain was bad so SOMBODY would do something!!
Just hope things are at their worst and will start subsiding soon, but have no idea what to expect. Guess I'm just along for the ride - hard when you've always been in the driver's seat! Thanks for reply!

Beth

there is a vaccine damages fund you might be interested in trying to tapp also- Im not sure about whether it refers to children or adults or both- here is a website you can find out if you want to apply for compensation-

https://www.909shot.com/Issues/Comp_Summary.htm

Mary, Will definitely keep it in mind. My husband is self-employed, and insurance is not that great, this is already a strain and haven't begun to recieve the bills for the MRIS and neurologist visit! Condition has to last six months, am anticpating PT will be going on at least that long, but have 5 months to go before I can file a claim. All I can do these days is sit and wait... Sigh...not my favorite thing!

BethJ