United Brachial Plexus Network, Inc.

I, like most of us, have spent hours researching the medical side of TBPI. I definately don't know all the ins and outs of nerve root avulsions, but I find myself always trying to explain the pain aspect of it. People generally think my major obstical is the loss of an arm. When I tell them that having one arm is not a setback, but the pain that accompanies the injury is extremely diabilitating. It's even harder to explain that the majority of my pain is in my hand and the ulnar side of my forearm. People don't understand how that's possible when I'm paralyzed with a complete flail arm. I stumble thru the explanation of nerve root avulsions and constant relay of injury to my brain. The nerves can't regrow because they were pulled out by "the roots" and that breaks the circuit for electricity to flow and therefor, constantly send an injury message to my brain. My silly questions are: Is the pain phantom pain? If my injury was amputation of my left arm, would there be pain like I have with avulsed nerves? When people are paralyzed due to breaking the spinal cord, is there pain? My second question stems from the surfer girl getting her arm bit of by the shark and the last one by Christopher Reeves case. This post has gooten too long. I just want to have some answers to all the questions I get about my arm.
THANX LOVE SUSAN

Hey Susan this is a good question that I odnt have the answer for. This is one that I would post on the TBPI UK boards! I am sure that they will have an answer for you! How are things going these dyas? Keep in touch!

Courtney xo

i dont think that amputees would have the same kind of pain.. or if they did i would think it would be more treatable w/ conventional drugs. i think, because there would still be synapses, that opiates would be successful in blocking pain transmissions
ive heard many explanations for the pain, and probably just as many explanations for the alleviation i seem to feel when i put my head down
i wish doctors would just tell me the truth (that 99% of them dont know) instead of treating me like im so naive that i could never possibly understand simple nerve function
good luck

Susan,
Its good to hear your voice again. Hope you are doing well since your surgery. Just had mine Jan. 6th to innervate my biceps and supraspinatus. C5 and c6 torn out of the spinal cord. Now I feel pain in my shoulder for the first time since the injury. My supraspinatus isn't strong enough to hold my arm up in the socket yet, so it feels like a seperated shoulder. I can't remember which nerves you avulsed, but I'm curious which nerves/muscles you had innervated. And what, if anything, you did about the scar? Mine goes from behind my left ear , down to my chest, left to my arm, then down the middle of my biceps. Looks like something you would get from MapQuest. Any recovery/muscle contractions yet after having the surgery? How are you getting along since moving out? Enough questions, take care for now. Cheers....Karl....

Hiya Punchy...so glad to hear from you!

You are so right that most people (who don't have a BPI) think that the loss of use is the worst part of this injury when in fact, it is the pain thats by far the worst aspect of it all. Explaining it to people is almost impossible...anyone who hasn't got this will never truly understand it, and this includes the Drs, therapists or whatever. The Drs can come up with all sorts of theories about why the pain can be so bad and almost impossible to treat, but in the end, they still don't really know.

From years of research about this, I have uncovered quite a few theories about the mechanics of the pain...my surgeon explained it to me like this; when a nerve root is avulsed pre-ganglionic, it can leave raw patches on the spinal cord and these fire messages constantly, kinda 'looking for' the nerves that aren't there anymore, and these firings can be compared to a kind of epileptic fit on the surface of the cord. These firings bounce back to the thalamus and are interpreted as severe pain. This sort of made sense to me.

I also read somewhere that because the hand and fingers in particular take up a large proportion of the cortex of the brain, when something goes wrong in that area, or there is an injury there, the brain 'sees' and 'feels' it as being a lot bigger or more severe than we think it should. The theory is; anything that affects this area of our anatomy is going to affect the the brain or central nervous system proportionally more than we realise. (hope this makes a bit of sense!) Have a look at this site: http://cogsci.ucsd.edu/~ianfasel/cogsci.html
It shows a couple of pictures that indicate how much of the brain the hands alone take up. There are quite a few other sites that explain this 'homunculus' and how much of the cortex each part of our anatomy takes up. Just type in 'homunculus' or 'cortical mapping' into a search engine.

The question about phantom pain is not so silly; the pain we experience can be compared to that felt by amputees (amputees who don't have a BPI as well)although I would probably argue that our pain is possibly harder to control with drugs etc. particularly if avulsed nerves are involved, but I really couldn't say for sure. Both injuries would cause a certain amount of cortical re-mapping over time probably. I nearly always use the phantom pain explanation when trying to tell people what the pain is like; it seems practically everyone can understand that, strangely enough.

The spinal cord injury question is another one that isn't at all daft. Once again, I don't know for certain, but I suspect there is pain after such an injury too, but again, if the peripheral nerve roots are intact, pain control, in theory, should be a bit easier.

Difficult questions to answer, but certainly not daft. These questions will go on for years I reckon.

Hope its helped a bit. Keep in touch gurl...we miss you.

Liz x

Its so nice to have you all of you that unerstand! I completely with you, Punchy, the lose is something I've learned to live but the pain is the worst!!! I sow my doctors last year and I was their for help with my pain and only my pain. I left there with them wanting to do all these muscle transfers and a shoulder fusion. When I asked "will this help my pain?" They said "we don't know" Then why the hell would I go through all of that surgery to be in pain still??? I told them right off the bat that I was satisfied with the movement I have, since I've lived 1/2 my life this way (17 yrs since my injury) Have you heard of DREZ? One doctor wants to that but it scares the sh-- out of me. A few yrs back another doctor said in France they were doing brain surgery to stop the pain signals from being sent. When I asked about that @ my last visit they said they knew nothing of that?? They don't know how to stop it and it takes over my life sometimes. I guess I shouldn't be mad @ the doctors, they are only human and I'm looking at them to take away my pain. Hang in there. I found stress makes it ALOT worse; along with the cold.
Keep calm and warm..............
Kathleen H

There is a pain forum in this excellent Spinal injury website..sorry I dont have exact website with me right now and have to leave this computer but search under spinewire carecure forums and then go into forums, one of them is a pain forum. Most spinal injuries don't have severe neuropathic pain..there are a few people on the forums with severe pain but they are the exception rather than the rule. It does sound like peripheral nerve especially brachial is the worse pain. This site does have a search forum where you can search under drez etc.

Karl your injury is like mine..I have C5/C6 avulsed or badly stretched they aren't sure..thought they could only do a nerve tran/fer within 6 months aren't you a year or 2 post. I think I must have supraspinatus as I don;t wear a sling and my shoulder altho atrophied is defo in one piece. It doesn't ache or anything yet! Can I ask you as well do you have sensation on your shoulder and biceps. Sorry for all questions..thanks bye

my arm is amputated at the elbow and i suffer from bpi my shoulder, deltoid and there down is paralyzed but i have full sense of my forearm and hand.my pain is just like every body describes on this mb.i take no meds and it hurts like hell sometimes but im not going to let it control my life and im not going to let meds control my life. when it gets bad i use cannabis and a couple of beers, but i work 50 hours aweek and sometimes thats not an option,then i grit my teeth and take it.
southga

You are right, I was 17 months post bpi when I had my surgery. Dr. Tiel felt confident that it would work, hope he's right. It's too early to tell, I'm only 5 weeks post surgery. But prior to surgery I had no sensation on my deltoids or biceps. And the only pain I would get if I didn't wear a sling was from the Teres Major which is feed from c7. It was a dull ache in the back near the shoulder blade.

With c5 & c6 gone, I lost my deltoids, rotator cuff (supraspinatus, infraspinatus, and subscapularis) and my biceps. If this surgery works I will regain my biceps, and my rotator cuff (except the subscapularis). Dr. Tiel took part of the ulnar nerve and graphed it to the musculotaneous nerve. This nerve feeds the biceps, brachialis, brachioradialis, and some forearm sensory. He took part of the spinal accessory nerve for the subscapular nerve, which feeds the supraspinatus and the infraspinatus. If both graphs work I will be able to raise my arm about 70 degrees and bend it again. Sounds good, but its a gamble. I don't get something for nothing. I gave up two branches of perfectly good nerves for the chance to gain back elbow flexion and shoulder abduction. No regrets, its that chance of regaining arm function that spurs hope, and Lord knows we all need hope.

I'll keep you posted and feel free to ask questions. I think it’s therapeutic on my part, so don't hesitate.
Good luck with your recovery and keep that arm warm, it really seems to help. Cheers....Karl....

Thanks Karl, think I have some C5 muscles as I don't have a biceps but I can bend arm sort of sideways in towards my chest think I am using brachialis. which is c5 too. Strange, I have sensation in biceps deltoid but pain sensation is gone on back of shoulder ie stick needle in and I can't feel it but I have touch sensation. Its great hearing all different feedback as I can print out peoples surgeries and bring to surgeon to convince him to do as they are soo not knowledgeable about the subject.