How about an update... How are you doing with the SCS?? I hope all is well...

G ~

[beth]

Hi G!

The SCS has been a real lifesaver, wish I'd done it a year or more ago! It's really not comparable to a TENS so much, because a TENS is external, and competing with the ongoing nerve pain. The SCS has a lead, or 2 in my case, 1 for each arm, implanted in the motor processing area at the base of the skull, and instead of the pain signal being sent on from the brain, the stimulation is sent INSTEAD. And the Dr. works out a program on the computer that sends the signal to the perfect location to knock out your pain, once the leads are in the exact location. It's very individualized and impressive.

Of course, I heard once again the same thing, "Wow, you're very complex". If I only had a trophy for every time I've heard that!!!

Anyway, because it doesn't work for everyone, and because it is very expensive, they always do a trial first. I highly recommend at least thinking about it if your TOS or TOS/RSD is chronic and the pain is debilitating, and you've exhausted other options. I'm hoping to try to decrease my Oxycontin after I see my Dr at the end of the month - and that's saying a lot for me!

I am having problems with Lyrica affecting my kidneys, have been trying to juggle so I have some benefit but not the drawbacks - but am fairly certain I'll have to go off altogether. Nothing else helps the bad nerve pain for me quite the same as the gaba meds, darn it!

Am also still majorly fighting sleep problems. I can sleep 8-10 hours now, deep sleep, with dreams even! Problem is I am stuck in the night owl mode, have been wired for years now to be wide awake til 3 or 4, and take a long nap during the day. I can't get into a normal schedule, I've tried. Even if I stay up all day, which is almost impossible, maybe 1 night out of 3 am I actually ready to sleep at 10:00 p.m. or so. Am wondering if I need a sleep clinic to get it sorted out, but the thought of more Dr-types and "treatment rooms" is more than I want to think about at the moment, ya know?

Been bitter cold for weeks here, my hands have been feeling it The SCS actually helps keep the blood circulating better in the hands, so they stay warmer, but not in these temperatures. Zero tonight with wind chill of minus 10 - and that's warmer than last week!

No movement on my case - new lawyer for govt. hasn't even gotten an appt with the Dr I was supposed to have seen in Jan for an IME, so we would all have the report Feb 2 at our last phone conference. I can't think about it or I get so upset I want to take my frustration out on something - with my forehead

I am off to Philly on Sunday! I see Dr Schwartzman on Monday, this is my follow-up appt to my ketamine treatment that ended last May - don't laugh. If you can imagine, I was actually scheduled last Monday the 12th, but he was out of the office so they called and rescheduled me for this coming Monday, meaning they bumped someone else who had waited a YEAR or more to see Dr S. I almost said forget it, because of the distance and expense, but it is too precious a chance to pass up, and I need some better answers about my RSD, and what if anything can be done about my legs and feet hurting, some days I hobble like I'm 80.

I also hope to see Dr Togut, I hope he can fit me in. I need his take on just how bad this left side is, I think there's the same pattern of muscle loss as in the right. I know it's gotten much clumsier.

That's way too much about me!! Sorry you asked?? What's going on with you? I miss my friends here so much - I'm just trying to be really good about not doing things I know aggravate my arms, like computer stuff The pain is MUCH better, but I'm still doing a little watching over my shoulder for it, and being very, very good, just in case Tell me what's new in your life?

Wishing I was a California girl right now, that's for sure!

beth

[dabbo]

Hey beth - good luck with the dr.'s appointments. I am headed to a sleep clinic tonight for a sleep study. I haven't slept a good nights sleep in at least 2yrs. They think I have sleep apnea, which would explain why I haven't slept that much. Also, not getting that deep sleep prevents your body from truly resting and truly healing itself. I'm also pretty sure that jerking and flopping around doesn't help anything (aside from always waking my wife up!) So, I understand why you'd be hesitant to go see ANOTHER doc. heaven knows that we already see too many waiting rooms. but, i think that it could help, and help get you back on track.
- dabbo

[Jamie Moreno]

hey people what it do!

[Jamie Moreno]

Hey Beth wat r u doin!

Beth,
It's never too much!! There is so much to learn from what you are going through!!

I was actually wondering if the SCS might be something my husband could have as the morphine pump is not working for him. He had an infection at the interthecal attachment and in now relying on oral meds as they had to disconnect the attachment and debride the area to allow it to heal. On top of that he has severe ddd right at the area they needed to attach it, so he needs back surgery there. It's a mess over here!!!

I am glad that the SCS is helping you manage your pain, and the circulation aspect !! Wow!! I didn't realize it could help that as well.

Yeah, I m' sure that building a trophy room is in order!! I can only imagine how many times you've heard that! I know I hear it now and again.

I hope you can work out the sleep issue. That is a tough one. I am doing the awake thing from either 1-3 or 3-5 several nights a week and occasionally awake all night. It's no fun.

And yes I can believe the 1 year follow up. Sounds about right!!

I wish I could tell you there was something new in my life but it's still "the same old same old". I have a deppo today UGH!!

I have an Attorney who is representing me at the depo. but hasn't comitted to finishing my case yet. My first and second Attorney's (from same firm, should have been a clue huh!) made a mess of my case. They didn't file expedited hearings on denied treatments that I could have had way back at the beginning which could have possibly prevented some of the pain I am experiencing; I could have been allowed to have stellate ganglion blocks for one thing, and numerous other treatments!! Not only that but I could have received $$$ for their denial which really would have been nice!!
Hence my letter drive to California's renowned Governor. So life "is what it is" at this point.


Thankfully I have friends here I can count on for support and encouragement, and a sweet yellow lab to keep me sane!!

I hope your trip to PA. goes well. Maybe you can see Dimarie while there!!

Take Care!!

G ~

[gibbrn]

Okay another night owl checking in and cannot get back onto regular schedule!!! I too stay up until 2 or 3 o'clock in the morning without an afternoon nap and then get up to 10 or 11 o'clock in the morning..... nobody else runs on this schedule!!!! I worked a lot of nights as a nurse and was much better on nights I think it's because I was born at 5 p.m. in the afternoon I'm just a boring night owlI do get my eight hours sleep thankfully!!!

Love and hugs,
Victoria