[MarketRisk]

think this is it. been >3yrs now since cycle flipped sideways. shoulder pushed up and spine over shoulder (helmet bouncing off road). funny bone hit for months. nervey up right cervical, down right thoracic, and out towards right shoulder. wasted. winging scapula. clunky neck. just such rubbish pain.

why is computing causing such problems?
why does using the arms?

i can't live like this. shoulder surgeon sending me for possible modified eden-lange or serratus anterior surgery. but i was just examined by a medic about 2 yrs ago and i had a MASSIVE reaction - whole nerves flared up (he was trying to figure out why the right side was more forward and down than the right). what to do? any recommendations? i am so scared. i was lying on the floor in agony for months and only recovered to how was before (rubbish if you try and do anything) over a year later.

what is wrong with me?! had axonopathic proximal plexus and spinal accessory nerve lesions finally in sept 09. had all of right cervical and thoracic spine denervated before then, because pain guy thought it was spinal. right, best go, arms hurting like ... anyone else have very tight thoracic spine and crushing pain around the chest (along with the rats eating your shoulders, heavy electric arms and cold hands, stabbing neck, aaargh!)

why me? my daughter is 7 (she was 3 when this happened) and all i ever wanted was to be a good mum and a hard worker. sorry, feeling down. pain consultant saying my doing computing for 22.5 hours a week is not 'an insurmountable' for me. wish he knew what this felt like when i type. can i show him anything? he probably just thinks i'm workshy (had 1, 2.5, 1, 2 days off sick in 4 years prior to accident, bar 4 days for missed miscarriage, have 1st from cambridge and a ph.d. and post-doc research), but my pain just becomes unbearable doing this or anything else like sewing, or hoovering, or keeping my neck and upper back rigid. i was/am a maths modeller / software engineer.

does this make sense to anyone? i feel so alone.

after doing an hour computing through the day yesterday i ended up where i spent most of 2007 (when i was forcing myself back into work). on the floor, on my front, with my hands and arms under my shoulders and thorax, with hot wheat pillows on my back and neck, a fentanyl lozenge in my mouth, and sobs of pain and frustration. i couldn't even collect my daughter from school 10 minutes away. her father had to, and he'd been up for work at 5am.

i feel so useless. unhappy smiley face.

[Jomar]

For myself I didn't recover very much until I was off work , had some expert/advanced PT, found an expert/skilled chiropractor {also did upper cervical adjust as well as PT type modalities} and did a lot of self care and learning about my body and what it needs to best heal from this stuff.
And it still took about 3 yrs for me to get to a point of being able to almost feel normal. I'm still in the mild and sometimes moderate chronic category of RSI/TOS.
At my worst my pain level was about 6/7 but I was lucky that didn't last very long at all.

I learned about things like -
trigger points
muscle spasms
hydration & nutrition
hyper mobility - more susceptible to repetitive type injuries and misalignments
diaphragm breathing*

posture & posture fixes
{shoulders rolled forward, head forward hunched shoulders, etc}

- lay on back knees raised takes pressure off low back, feet can still be on floor, pillow for neck if needed, do the *breathing* and work towards relaxation , arms out at sides {comfortable position} 15 minutes as many=y x a day as you can do it - find the comfort place for you and then after you can do it with no increases in pain or sx- then place arms out a bit more and work forward to the next goal.
If you can lay on floor with arm out and be OK then the next step is a rolled up towel or a foam roll like PT places have.

some posture & evaluation vids-
http://video.google.com/videosearch?...3&oq=posture+#

here's more videos -
http://neurotalk.psychcentral.com/sh...163#post615163

be sure to try the search tool for specific topics too, we might forget to mention something important.

forum search-
http://neurotalk.psychcentral.com/fo...to_forumsearch

[kellysf]

This all makes sense to me. My son was 4 when all my pain stuff started. I can relate to the feeling of loss about how this affects our relationships with our children.

If you haven't done so already, explain in detail to the pain consultant why working 22.5 hours is so difficult. I was working 24 hours/week as an attorney and I had to tell my doctor why it was so hard to keep working, especially with the prescription medication. Turns out, he thought he had already put me off work. So don't assume anything about what your doctor does or does not understand.

Lots of us here have been treated for all kinds of things that may or may not have been appropriate. I would urge you to listen to your natural skepticism about additional procedures.

Welcome.

Kelly

[(Broken Wings)]

Welcome to NT

So sorry for your condition. You've had some good advice to start with. There's so much info here, with helpful things to try, it's amazing.

You have a lot of problems. My 1st pain management doc said I would be like peeling an onion off in layers. He was correct in that respect. I guess some onions are bigger than others.

I've lived through 7 yrs of hell. accident in 10-2000. These last 3 have been with much improvement. Keeps getting better for me.

It may take some time to figure out what might relieve some of your symptoms. I do believe you can improve on some things/areas. We'll help you figure things out. Just ask. Let us know what you're having the most difficulties with.

I've found that keeping my upper body "fleece warm" with blankets, throws or warmer clothes helps my pain level. Heating pads are comforting but not good in the long run, especially when you need them like we do. Hands covered with arm socks or nosepicker gloves. (You can get those at the Harley shops.) Inhale water. breathing exercises, posture, Theracane, balls, LED and infrared light pads, all shapes of pillows (neck/bone shaped pillows are comfortable for neck). palms up, like on the anatomy charts will show the figure posed.

At my workstation, I've got articulating arm supports (took them off for a whle but have put them back in use-aggravating at times), oversized tennis ball, 1 of my Miracle Balls, a long dressing mirror at the side of my station so I can keep an eye on my posture. I call it the "Posture Police." Fleece blanket, arm socks if I need them. I used to use wrist splints with thumb spicas, right and left, Kinesio tape (helped me with ADLs and kitchen duties, keyboarding. So many things.

I found some injections helped and some didn't.

I understand being too sore to work on, but I let them anyway. Some of that helped and some of that didn't. I've been through a lot of different things. I'm much better these days and my pain levels would be from 1-4, maybe a 6 some evenings. Driving gets me, still.

I understand if you're just not able to do any, and I mean any kind of stretches or exercises, but have it as a goal in the near future. Squeezing toothpaste was painful, and that cap... ugh!!!!

I understand the dark side of pain. Been there. 24/7 @ pain levels of 7-10, with very few 7s. Don't even want to think about it, really.

For now, you just do what you have to do to get through it.

We are willing to share our experiences and help you figure things out. No question is too silly here.

We understand.

[MarketRisk]

thanks for your messages. so many threads, i don't know where to start. and when computing makes it worse, hard to do!

did wonder why, once flare-up flaring up, that symptoms become apparent on the left arm as well?

any drugs that help? anyone in the uk? apparently they don't do much with this in the uk. i contacted dellon in the states and he said to come over there for surgery (after i've seen carlstedt here in london). also saw that nath deals with neurolysis.

upper, upper trapezius very wasted as well, and don't see how that would be affected by neurolysis?

why do my arms feel so darned heavy? i'm not carrying anything!

best wishes to you all. sorry that you know what i'm going through (if you know what i mean) x

[(Broken Wings)]

Hi,

I understood my heavy arms to be a symptom of TOS.

http://www.fentek-ind.com/ergorest.htm

http://www.ergopages.com/ergorest.html

I also found stretches for my arms to help with the heaviness. I would roll a towel longways, cylinder shape, and place up and down my spinal column and I would extend arms out, like cross shape I guess and then slooooowly raise them, reaching for the ceiling, and brings palms together and then slooooooowly back down. They get easier. I would do these after a hot shower, seemed to work better for me.

My whole arms, every inch hurt. So yeah, unfortunately I know what that is. I don't have that heaviness now. I'm even driving without pillows for props.

I don't think I mentioned to you about the Kinesio tape. They helped with ADLs. You can order it online. You or a friend or health care professional can apply it. Best if used up to 3 days. remove and a day or two later reapply. I wore it for three weeks. People would ask "R U a burn victim?"

Also, on the taping, if you pull too tight, it can cause muscle spasm. Just to let you know from experience.

http://images.google.com/images?hl=e...inesio+&aqi=g3

http://images.google.com/images?hl=e...io+tapi&aqi=g2

You could try it. It helped me.

[TraceyW]

Originally Posted by MarketRisk

thanks for your messages. so many threads, i don't know where to start. and when computing makes it worse, hard to do!

did wonder why, once flare-up flaring up, that symptoms become apparent on the left arm as well?

any drugs that help? anyone in the uk? apparently they don't do much with this in the uk. i contacted dellon in the states and he said to come over there for surgery (after i've seen carlstedt here in london). also saw that nath deals with neurolysis.

upper, upper trapezius very wasted as well, and don't see how that would be affected by neurolysis?

why do my arms feel so darned heavy? i'm not carrying anything!

best wishes to you all. sorry that you know what i'm going through (if you know what i mean) x

Hi I saw professor carlstedt in london (was referred by dr chris jenner who works privately for the London Pain Consultants), didnt find him very knowledgeable about TOS and found him a little cold as a Dr but it is worth a go. Im now under the care of Dr Chris Jenner who as well as working privately, is also at St Mary's hospital in London, he sent me to see his physio Helen Dawson who is very, very good and although i havent been cured she really helped me understand the mechanisms behind what is causing my pain. Dr jenner has given me 2 lots of botox in my neck and this has helped with some of the pain, although the hand coldness and pain in little finger still continues so I am off to see another vascular dr week after next......

DO NOT give up - i have been to various dr's and most have no idea what to do with me.....a good pain cons can help, he has prescribed pregabalin (called lyrica in the states) and amitriptiline which helps for nightime pain......

[MarketRisk]

thanks for your message tracey,

i want to go down the neurolysis route, since whenever i try and do anything much with right arm, or even having head unsupported, causes nerve irritation symptoms to increase. have spent months on the floor following examination of the area. to me, the dellon pain book makes sense - i.e., that pain signals have to come from somewhere and that is always from nerves. if you can find the nerves then you can kill the blighters, or decompress them.

frustrating that nobody in the uk seems to go down this route unless it's to do with other nerve problems (e.g., nerve graft, and then they'll do a clean up of scar tissue that was there, rather than just clean up the scar tissue and see if that helps with debilitating pain symptoms). would that sensory experience was transferable to consultants (temporarily)!

does jenner not go down the neurolysis route either? i've had botox in traps, levator scapula, a couple of times, but just a bit of temporary relief from spasms. upper traps and serratus anterior wasted, so until that sorted muscle imbalance plus scalene tightness (which came first) will continue. and the blooming nerve irritation, heaviness, coldness, etc.... on use / examination.

how are you? do you live in london? i'm in cambridge.

really hoping for advice on who to see / consider in the us. i'm happy to use up life savings if it might help!

best wishes,
zoe

[DiMarie]

Originally Posted by MarketRisk

thanks for your messages. so many threads, i don't know where to start. and when computing makes it worse, hard to do!

did wonder why, once flare-up flaring up, that symptoms become apparent on the left arm as well?

any drugs that help? anyone in the uk? apparently they don't do much with this in the uk. i contacted dellon in the states and he said to come over there for surgery (after i've seen carlstedt here in london). also saw that nath deals with neurolysis.

upper, upper trapezius very wasted as well, and don't see how that would be affected by neurolysis?

why do my arms feel so darned heavy? i'm not carrying anything!

best wishes to you all. sorry that you know what i'm going through (if you know what i mean) x

Dillon is very knowledgable, and I am not sure if when you got here he would suggest surgery or not, there is one other doc that if anything are doing a modified release.

The fear is the scar tissue. It sounds like your work is just another day of reinjury. I have dragon dictate, but when working I have to edit and upload photos labeling them just too much to do when Dragon'ing.

The nerves affected are coming off the spine, from the Cervical C4/5/6/7/8 & T1. THese become the three major nerves of the arm, Radial, Ulnar and Medial, all the way down to the finger tips, three feet away. THe neck does not discriminate to one side with TOS. When one side is affected the body is mirrored and will compensate on the other side.

I found a lot of relief in flares with a medrol pak, steroids, and Toradol shot.
I recently fell into the left arm and did the rocking in pain until the doc did the Toradol and medrol pak.

BUT work habits have to change to help tone down the pain. There is no way to work through the pain without hurting yourself more.

The heaviness is the nerve compression.
If you raise your arms, the outlet area, behind the collar bone, infront of the first rib becomes compressed. This makes the arm fall asleep, tingle, feel heavy.

[clncolt]

Hi

I have been dianosed finally with Spinal Acce3ssory Nerve damage after having a lymph node biopsy. Took the docs 7 months to figure it out. I too ama candidate for the Eden Lange Procedure. Did you or anyone you know have the procedure done. I am 48 years old and just terrified