[dawn3063]

I'm here...
Going thru my Stellate Ganglion Blocks for RSD now... The last block will be this friday.. I can't say that they have really helped me too much. I have had relief from the hand and elbow but not the dreaded sensativity that is on my arm.. That is the "Worst" part of the problem along with extreme tenderness with any pressure to my upper arm... Ugh.. I really do like the PM docs and they are going to look for another route if this doesn't work.
Left sided TOS is not behaving and in my oppinion, No more surgery... Not unless it's Absolutely Necessary... So, how to deal with that for now...
Sorry to not be posting too much.. I've just been exhausted and taking naps, ALOT of naps... Lot's of stress too.. AME is coming up on the 13th (My Wedding Anniversary of all days) and then my ALJ hearing for SSD is on the 14th of this months... So keep me in your thoughts... Please....
Hugs to you all
Dawn

[trix]

Since my surgery in October 2006, I have seen great improvement. I no longer take any pain medications, except for Tylenol every now and then. I do have some pain, but it is about a 1-2 on the pain scale. Now I am working on losing all the weight that has piled on over the last two years of pain, medication and inactivity. I am more and more active, and starting to hope that soon I will actually be able to go back to work. Hope everyone else is doing well.
Tracy

[Jomar]

Tracy that is wonderful - I hope so too!
Keep on top of any little things {pains} before they become a problem.

Dawn - is the sensitivity from the RSD or TOS ? - what part of the arm is it? I had a lot of hypersensitivity on the top side of my forearms for quite a while. It was a more a constant tightness feeling and just slight skin sensitivity- not burning or swelling at all.
I think i decided it was from a small nerve that goes to that area and the chiro must have done something to release that one about a yr ago I guess.

Oh these show it - http://www.innerbody.com/image/nervov.html
http://mywebpages.comcast.net/wnor/l...nt&postarm.htm

Dabbo enjoy that little sweetheart as much as you can- they grow up so fast.

[dawn3063]

Hi Jo,

My sensativity (Hyprsensativity) and sever pain with any pressure to my upper arm. It is located on my inner right arm between my arm pit and elbow. The sensativity was also on my elbow but that has disipated with the blocks as well as the burning on the palm of the hand.
It also burns and at times feels like a hundred bees are stinging my inner arm...
Lidoderm patches are the only thing that help the sensativity and Norco helps the pain in the arm when it becomes unbearable....
I'm pretty sure the RSD was on the hand and elbow but I think the inner arm is a damaged nerve from the second surgery..

Hugs
Dawn

[johannakat]

Dawn- O am having that upper inner arm sensitivity now, too...as (hopefully) the nerves are working there way back to working condition. I didn't realize that in the underarm incision all the nerves to that area basically get cut. that was my big unhappy surprise!!! Also didn't know till after that it isn't guaranteed they will grow back


Was very dissapointed to have all the same back spasms over the last two days on the surgical side...you know, those ones i was hoping were going to go away. *sigh* well, hopefully when everyhitng calms down they'll get better.


On a bright note, got a nice massage today....she worked all teh psoas muscles and opened up my chest a lot. I haven't been able to get my cshoulders back since the surgery but I can now, yay!!! Will be interesting to see if it lasts with so much less nerve irritation.

i am rambling.

must go,

love you all, really i do, and thinks so much for all the daily support. means so much to me to know you are all out there.

Johanna

[G-mom2]

Mostly reading don't type much anymore,
seems like I get too much backlash from too much typing but at least I know what it is from.
Keeping everyone in my prayers and hope you all are keeping pain levels down.

God bless,
g-mom2

[Sea Pines 50]

i remember dr. steve annest telling me this was the number one risk of the transaxillary approach, or perhaps just the TOS surgery itself (frankly, i was so gung ho @ that moment i probably wasn't listening to him all that closely, more like "yeah, yeah, sure, sure...and could your eyes BE any more blue, d'yuh think dr.?" - but alot of patients end up "numb" in that area, or can have the type of hypersensitivity you are both describing, i think.

obviously, dawn is a little further out in the healing process than is johanna. but we TOS'ers want what we want when we want it, don't we? we simply don't rock with the snail's pace at which these nerve injuries insist upon healing themselves...

i am far from expert in the area. but i am a shivering wreck, as the brits would say, so i suppose i qualify from within, if you will, on that basis alone. nerves grow back v e r y slowly. di used to post about this, frequently (help me out here, friend di - is it only the ulnar nerve that grows at a rate of 1/8" a month, or something along those lines?) rate could be even slower, for those teeny tiny ones, and i would think the worse the injury or compression, the longer the healing time, too; the ulnar is one of the "big 3" we're all familiar with (and for the WRONG reasons, i might add!).

there is a very kind radiologist originally from new zealand practicing in beverly hills by the name of dr. david campion. (i call him my champion, for it was he who raised the reg flag in my own case and queried in a set of electrodiagnostic tests ordered by a certain pain doc at cedars who will remain nameless "has anyone ever tested this woman for neurogenic TOS?" and thus began my journey to ahn to annest and to you good people... but i digress). dr. campion very gently said this to me when looking at my wasted hand:

"don't EVER give up on your nerves."

and that's what i wanted to pass on to you guys today.

that is precisely why i don't listen to doctors like weaver when they say negative things that try to take away my hope, things like "your nerves aren't coming back, you know, ms. ayers...". because of my champion and because of the simple fact that the human body is amazing, he is absolutely right; your body WANTS to heal.

it is your job to give it the right environment, the proper hydration, nutrients, rest, massage, nerve glides (gently, now!), desensitization techiques (soft flannel to terrycloth to lufa to different grades of brush; lots to read up on), whatever you can do to encourage the natural healing process along.

oh, god i smell another thread coming from hojanna now.

people, we've created a monster...

alison

i'm not judging! i'm just saying!....

[dawn3063]

Originally Posted by Sea Pines 50

we TOS'ers want what we want when we want it, don't we? we simply don't rock with the snail's pace at which these nerve injuries insist upon healing themselves...

Alison,

You sure hit the nail on the head with that comment!!!!
Thank you for all that information... I know they said that the nerves regenerate and grow very, very slowly sometimes over years...
I guess as the old saying goes "Patience is a virtue" Ugh..Sometimes I hate that saying...


Many Hugs and Thanks again...

Dawn

Oh, Ya.. I start Bio Feedback tomorrow... Yea...

[moneymaker8]

I'm new to this sight but have found it so helpful to know there are others like me who actually understand. I see my surgeon on Thursday and he will want to schedule rib resection soon. I'm very nervous but in so much pain I want to die. I am about out of my mind in pain. I have been in pain for years and have had 4 surgeries in the last 2.5 years. I had a 3 level fusion in my cervical spine and after the surgery still in pain new MRI doctors noted bilateral extra rib now I have diagnosis of True TOS all my pain is left sided but pulse is dead bilaterally. I'm so confused I have seen a neuro surgeon who just did a ulnar nerve decompression wit transposition 3 week ago and he had confirmed the diagnosis and recommends the surgery and says that the Cardio Vascular surgeon I am seeing is a great surgeon My ortho pedic surgeon who did the three level fusion in cervical also confirms the diagnosis and he gave the same opinion about the Cardio surgeon. I felt very comfortable with the Cardio vascular surgeon who told me he wanted me to have the ulnar nerve decompression and that he would schedule the surgery this week. I just don't know what to do all doctors have a concern that it is positive on both sides and are in hopes that after surgery with therapy I may be able to prevent right side surgery. The disc above my fusion has also ruptured and I will have to have disc replacement within 24 months. I have been in so much pain I had to finally quit work 2 years ago and I await a hearing for my SS disability unfortunately I don't hold out much hope since I was turned down at reconsideration I have 3 doctors stating I am totally disabled so I just pray it will happen one day. Mean while I have lost everything house car etc depleted all savings. I will have bankruptcy hearing next week. Anyway in some ways I just feel a glimps of hope that I could get some relief from the surgery I know I'm rambling but I am in so much pain I just don't know what to do. Any information or input would be greatly appreciated I only found this sight last week and I feel so happy to talk to people who know the valley.

Thank you
Beverley

[redjpwranglergirl]

I haven't had the TOS surgery and hope I never have to but I can add something here as far as nerves coming back after surgery- this isn't to discourage anybody! This is just what I've found to be true for me. I had a surgical procedure back in 1991- I still have completely numb spots in that area....On the same foot that I had surgery on in Apr. of this year, I had my second surgery on it back in Apr. of 2005, and the area around one of the incisions is still completely numb. I can sympathize with all of you having this nerve pain after surgery because I had a very tough to go through abdominal surgery in Feb. of last year and not only were nerves cut but the areas where I was held "OPEN" with those clamps were excruciatingly painful for several months- in fact, more painful than the surgical incision itself and part of that area is still numb.