Thank you, Beth, that does help a lot. Can you tell me something? Is the atrophy in your hand happening because of the BP damage, or the RSD? What are the early symptoms of RSD? As soon as I read your description of your hand, I glanced down at my hands. My left hand looks significantly smaller than the right, as does my forearm. I had never noticed! Is that not, possibly, from using it less, with a natural muscle atrophy? I went for an IME yesterday, and the doc measured both my arms, above and below the elbow...I'm curious what her results were. Obviously she noticed a difference, also; no one has ever mentioned it before.

I'm so glad your SCS is helping...and I will take your advice. If something hurts, I will stop. The exam yesterday gave me a day of agony, with the hot sensation in my arm (especially around my elbow) again...my husband wants me to rest today. Is there anything else I can do to keep anything from worsening?

Better stop typing! If or when you can, I'd appreciate hearing more. Thank you very much!

Donna

Donna,
I think each of us who have the TOS MONSTER harbor RSD or as some Drs will call it CRPS and it can rear its ugly head at any moment that some are fortunate never to see. If not for this site and the OLD BT and the special people who come out to help I would not be around now!!! I hope things do get better with you........... MARK-n-GOOBER

The atrophy has been a mixed bag. Within days of getting the shot I had atrophy of the trapezius and other muscles -my mind's gone blank again -
rhomboids and levator ......... something, anyway, my shoulder dropped close to 2 inches. Shortly afterwards is when I first started feeling numbness and tingling in the hand and the fingers started growing cold. I also had a lot of twinges in the scap area and shooting pains in the triceps.

The biceps, triceps, trap and other upper back muscles atrophied due to nerve damage from the brachial neuritis. I've been told that damage is probably permanent. No PT or home exercise has ever helped. The hand atrophy is mostly due to TOS, I've had many EMG's showing nerve compression. When I had the rib resction done, an extra scalene was found, wrapping around other muscles, running through the wrong places and very close and tight under C-8, so that every time I moved my arm that scalene made a sawing motion against the nerve. The surgery helped relieve compression on the lower and middle trunk of the BP.

I still had sx in my hand and the atrophy continued there, and six months later another EMG showed a lesion of the medial ( I think) cord - sorry, I don't remember these things well without checking my papers, and I need to leave in a minute, so I'm "winging it" Anyway, this time the compression was at the pec minor, and I had surgery to relieve that. Again, it helped, but the incision got infected once I returned home, no local Dr would touch me for weeks til I finally begged enough after it had abcessed twice and 2 rounds of antibiotics hadn't done a thing, and 10 weeks after surgery it was still nasty looking. I'm sure I have quite a bit of scar matter between that and the rib resection, and there may be other areas of compression still, who knows?

The neuritis also damaged the nerve that runs under the arm and down the side of the ribs, and branches from the underarm over into the breast. That nerve was damaged or irritated more during the rib resction and causes crazy pain at my elbow. The elbow pain and my hand going icy cold several times a day have been my biggest crosses to bear, they are so hard to ignore. Luckily, the SCS is helping some with the circulation in my hand so I don't experience as much of a temperature change, or as often.

I carried my right arm for the first four months, as the whole thing hurt so much, and at least the drag on the shoulder was less that way. I did do several weeks of PT and saw a chiropractor and a massage therapist, but outside of therapy I carried that arm constantly, like the lion with a thorn in his paw :icon_wink: When I finally got my PCP to send me to a pain Dr, the first thing they had me do was start using the arm again. I probably lost some muscle due to that. Otherwise I've used it daily as much as I use my left, but no heavy lifting, vaccuuming, laundry, it's extremely painful to apply any force with my right hand due to the RSD, so that limits me a lot.

I did have really good upper arm strength prior to the injury, always had since I was a kid. I detassled corn during summers as a teen, waited tables before and during college, taught preschoolers before having my own kids. My first car was a Mustang, it was a stick shift without power steering or windows. That alone built strong shoulders!!

I have TOS on the left as well and the muscles are wasting exactly like the right hand, around the thumb and first finger area, and at the little finger.
So I drop things with both hands

SIgns of RSD - pain to touching things, or being touched, that was real early, temperature changes, like the icy cld that seems to start from the inside of your hand and spread out, an ache deep in the bone, almost like acid eating away at it, and heat bursts, almost like sunburn, appearing anywhere on your body, lasting from seconds to half an hour or more.

However -- some of these things TOSers will feel because their sympathetic nervous system is overstimulated, or overwhelmed. That doesn't mean you WILL have RSD. But when you get these sx it may be a sign you're overdoing things and your system needs a rest. If you ignore them and keep pushing on without listening to your body they may become worse and more frequent and at some point become truly RSD. RSD is awful- there is no cure, not much even helps.

Please take care of yourself, ok? It's a hard time to not overdo, I know. Make some lists, cross out everything that isn't essential, delegate everything you can, save your energy for the things that are truly important. You just can't do it all, and if you try, you won't enjoy any of it.

I'm learning simple really is better in lots of ways, for the whole family. Well, I need to go, talking way too much here!! The other thing I try to do is not type too much - sure blew that one today, didn't I?

Nice to meet you!

beth

Thanks, Mark and Beth (sorry you had to type so much, Beth!) I don't think it's RSD...I did a little reading on it this evening, and I don't think I have enough of the diagnostic criteria. I think it's just plain old TOS and/or BP injury (as of now!); the atrophy is probably because I don't use that arm as much as the other one. I appreciate hearing your story, Beth...you've been through a lot!

But I am going to take all your advice and give things a rest and see if I can get the pain under better control. I do think I've been pushing too much...and I don't want to bring RSD on by keeping the pain levels so high.

Thanks again...it's nice to know you guys are here, and understand! I'm so sorry you all are dealing with this, though!

Donna

YOu sound just like me in my first year, while I was still working. Thanks to the doc not knowing what he was doing, I didn't get any therapy, and I sure should not have been working. I am now bedridden. That delayed effect you talk about is true in two ways - one, a few days later it rises from whatever you over did, and, if you really push through pain for a year or two, then you get a nice couple or more years of horrific pain like I've had. My condition would not be so entrenched and painful, rendering me totally bedridden and needing my fiance and nurse to care for me in every way now, if I hadn't pushed through that last year of working. I KNEW I was hurting myself, but never imagined such a cureless condition existed as this. I didn't know about this before.

So those are the words the world renown surgeons and neuros tell me - "entrenched, chronic, too many years of pain" when they talk about my future, and conclude that my damage is cureless.

Other people on this site get sick, get therapy immediately and stop work, get surgery within 6 months, and more therapy and seem to do pretty darn well compared to me and a couple of others who lagged behind in care.

And TOS IS the feeling that your skin is burning. Although TOS and RSD have symptoms that are the same, that hot skin is a certain RSD feeling that went from my right to my left to my back to my thighs and ankles. TOS doesn't roam like RSD does. So be careful.

Hi Beth, Wow what a road your travelling. May I ask what kind of vaccine you had. I am thinking back and I remember I was going through hepatitis vaccinations when this stared. I don't remember the time frame, but I need 3 shots over a period of time and remember my arm hurting bad for at least a week. Like some one punched me really hard. I phoned the pharmacist and he told me to ice it. Just thinking out loud.

I get it I really do....pushing through the pain...my pain doc gave me good advice for Christmas "DON'T GET WRECKED" that includes the pushing through it the taking of extra meds to get by and just to get out of bed. Then the day comes when you need double the meds as the other dose just isn't doing it for you anymore....etc etc.....enough about the meds...

Issue is you are doing more and more never damage by PUSHING through it. You are always putting yourself at risk when you push through it. the more you agitate your nervous system the more it will fight back and you can for sure develop RSD.

Be careful and know we are here for you....set a timer then take a break only work for say 20 mins then break for 20 etc. I have dollar store timers in all my rooms so I don't loose track of time and get too involved with what I am doing.

Just my take on it!!
take care,
love and hugs,
Victoria