[Spiney95]

The lower lumbar and sciatica are way out of control. I keep falling when I get out of the recliner or off the hospital bed. I am all jammed up from it and everything is inflamed. I can pretty well see that I am dealing with inflamation as nothing helps except to sit in a hot bath at which time the pain comes down immediately. Sadly, I can only soak three times a week when my aid comes. I don't dare get in and out of the tub without help. The kids live out of town.

I have my scs trial on Aug 7th. I have been hesitant to try it again but am desperate now. So tired as I can't find a decent position to sit or lay down in. I think I can deal with the Fibro and other autoimmune garbage if they can just lower the neuropathy a bit. 30 years is just too long to deal with this and everything is going downhill..........quickly. So tired, foggy and mean as a bear.

[mrsalkire]

Sounds horrible. I am praying that you can find some hope and relief with this trial!!!! hang in there!!

[Spiney95]

Need all the prayer I can get. Have a great day.

[Leesa]

I've had it for 26 years, so I know what you're going thru. It's absolutely miserable.

First, when you lay down, make SURE you have pillows under your knees, when you're on your back. And make SURE they're high enough to take the pressure off your spine. When you lay on your side, you MUST have pillows between your knees to keep the spine aligned. Do NOT lay on your tummy. That really screws up the spine. Also, believe it or not, heat draws blood to the heated area and causes more inflammation to the heated area, causing more swelling & pain. ICE reduces swelling & inflammation and thus reduces the pain. My neuro sent me to "back school" after surgery and that's where I learned this. Make sure when you use ice that you wrap it in a towel and never put it directly on the skin. It does "hurt" when you first put it on, but believe me it WILL help the pain and does keep it at bay for awhile. Use it for 20 minutes every 2 hours. It does work.

I don't know what meds you're on, but for the burning/stinging/zaps/ & neuropathic type pain, topamax is great for that. I find it is better than Neurontin (Gabapentin) as it doesn't cause the water retention weight gain or the "loopiness* that Neurontin does. In fact I even lost weight on Topamax. Lyrica helps alot too with the pain although it makes me very sleepy.

Sciatica is just awful. The continual pain from that is something I just can't describe. Before my doc got my pain undercontrol, which was just recently by the way, I thought I was going crazy. 26 years of that was just too much! No other doctor would even TRY to work as hard as this doc has.

I wish you the very best. I hope the SCS works for you. I didn't have any luck with it, but most people DO. So I'm sure you will too. It's a SNAP with the trial, and even the implantation is a snap. There's no problem with the whole thing. It's really simple so don't worry! God bless & please take care. If you have any questions, just ask. Hugs, Lee

[Spiney95]

Thanks for your ever ready support that you have given so many over the years. I am currently taking Lyrica () and Gabitril for the neuropathy. I now use a hospital bed with a six inch microfoam mattress on it as you know how uncomfortable hospital beds are. It is a bit helpful to be able to adjust my body position, particularly durring the night, by raising and lowering the foot of the bed. I should have stock in a pillow producer . I can't tollerate cold temps so "icing" is out of the question. Drinking ice water causes a pain flair. It's crazy. While there is no doubt that the degeneration, damage from bad surgery and the other problems in the mix are getting worse, I think my biggest problem is that I am burned out from dealing with all of this for so long. I know you understand that feeling quite well.

I am hopefull about the scs. My first trial was a failure but that was most likely due to an improperly trained doctor and not being given any post procedure instructions. That was 15 years ago. The equipment and procedure have improved. A different doctor will be doing the work. It will have to work as the pump is not an option for me. The implantation is just too darn invassive for me now. If the stimulator will pull the pain from a consistant 9 to 5-6, I think I will be back on top of things again. I can live with the host of autoimmune and mobility problems if they can just pull down the nerve pain.

If the trial is a success, I have to see a psychiatrist. After that, it's a meet and greet with the surgeon up in Louisville who does the inplantation and then set up a date for the inplant. I hope to have this behind me before the holidays. I hate all of this pre-op foreplay . I will stay with my daughter in Louisville for a few days, post op, as I hate being two hours away from the surgeon if there are any glitches. In the meantime, I guess I just need to bite the bullet. Take care and have a great day.

[Leesa]

Gosh, you've been thru the mill. I'm so sorry you've had to deal with all this. Like you said, after so many years of this, you just plain get burned out. I know for me, even my once a month doctor appointment is just too darn often -- I'm sick to death of doctors. But if I want my meds refilled, that's the deal.

I really hope the SCS works for you. Like you, I had mine implanted in about 2000 or so, and while he'd done many of them it just didn't work for me. In fact, it seemed to agitate the sciatic nerve even more. And then to top things off, I was pretty thin and the "generator" tried to work itself OUT of me!!! The corners of the darned thing started poking thru! So it had to come out before it came out by itself. LOL Then I was left with scar tissue from the leads in the upper back, and I still have a sensitive spot there, and if anyone touches me there, I get a "zap" and jump sky high! People think i'm nuts if they pat me on the back and and I jump 10 feet! LOL

They sure drag the procedure to GET the SCS out, what with seeiing shrinks, etc. By the time you get the darn thing, you're almost out of the notion. I had to go thru all that too, and I was getting sick of the whole thing. They were sending me all over the darn state, seeing this person & that.

Anyway, my prayers ARE with you. PLEASE let me know when your procedure is scheduled, will you? I'll be with you in the OR when they do it. It doesn't take very long, but I'll be with you!!! God bless & lots of prayers for less pain. Hugs, Lee