Tam, so so glad you've been able to post - have wondered how you were making out. Awesome that you (finally) found good in-home care.

I too keep thinking that I'm eventually heading for a nursing home. It's so depressing to consider. But you are absolutely right - you could be setting an example/legacy for your girls. The thought that keeps me from the "out" option: there could be others in the nursing home who need encouragement, a friendly ear, or a good belly-laugh. I can help. As long as there is some small thing I CAN do, I have a purpose here. Damn the pain. I may lie in bed and cry for 5 days straight, but if I have 1 day that I can be helpful... then worth the pain.

I wish I could send you $5K. Would an attorney work for you with the promise of payment upon reciept of SSD/WC?

Much love and prayers for relief, :hug:
Anne

Anne and Tam- Please listen!
 

Girls, you know I've been where you are, and felt the same way - only my family and my faith - and at the hardest points, only my daughters, kept me from checking out, cause who wants to keep keeping on when your entire existance is pain?

I'm still not convinced you aren't experiencing RSD, Tam - it sure sounds like it to me - the sweating, burning, spreading to the legs - much more than TOS. I tried everything to get the RSD calmed down after TOS surgery - that's when it really got nasty, just as you say you've been so sick since surgery last year. You need an RSD specialist!

The one thing that did help with the RSD was ketamine - took the RSD pain to zero by day 3, and at 2 weeks later I still was a 3-4 out of 10. Kept most of that relief for 6 months - through the WINTER - with booster treatments. But it didn't stick for good, and the ins. co. denied coverage, so gradually I am seeing all sx returning.

However, what has made a HUGE difference in quality of life is my SCS - I can't tell you how much it has reduced the pain, as well as improved my sleep, my mood, and returned me to more of the person I used to be. I still have to be good, can't do a whole lot more with my arms or I pay the price, but day-to-day life is so much better!

The SCS I have is by Advanced Bionics, they also make the Cochlear Ear Implant, and my Dr won't use anything else for upper extremities. I have an electrode for each arm that covers from fingertip to shouldertop and underarm, and a handheld remote that allows me to increase/decrease stimulation. The program is set individually in the OR during the trial surgery to find the coverage that works for you, so if it won't work for you Tam, they will find that out then. But it IS different than external TENS, because this stim is internal and is going directly to your motor cortex and blocking the pain transmissions from reaching your brain, instead of coming from outside and competing with the pain signals. If it gets uncomfortable you just bring it down a notch or so - you soon learn where "your" zone of comfort is.

I have mine on 24/7, and re-charge the battery every 10 days or so - takes about 3 hours, I can wear the charger under my clothes while it's re-charging, it's small and slim. ANd the life-expectancy of the battery is 10-12 years, according to what my Dr has seen, which is a big improvement over earlier models.

If your pain Dr will do nothing for you, it's time for a new pain Dr - that's barbaric! Please, PLEASE consider what I've written, and if I can answer any questions about the SCS I'll be happy to. It's been such a blessing for me, and I HATE to see you both still suffering so.

Much Love, :hug:

beth

Tam
 

Hi Tam
It's me ( back after a long time), have not managed to catch up properly but just to say sorry that things are still nit right for you and that you are having lots of battles. I am thinking of you like I do evryone I have met on forum.

Lupe sounds like bliss.
My best wishes and gentlest hugs.
Hx