requiem_aeternam, I would like your opinion please

Hi Kathy,

I know that your question was directed to Requiem, but having been active on various CRPS forums over the years, I've come to know quite a few people with stimulators.

From talking to others, I think a big problem is that patients are not given an adequate trial period...I've heard of people having trials as short as three days...or even NO trial... then going ahead with a permanent implant. I had a week long trial. I had what I think was probably an optimal experience. My doctor conducted my trial with permanent leads...i.e. anchored into place. It meant a more invasive trial surgery, but meant that the problem of different positioning was avoided. I've come across a lot of people who've had their trial done, had the trial leads replaced and permanents implanted while they are under full GA, then when they are activated have stimulation in a completely different area to where they had during the trial.

I think doctors will sometimes push SCS onto patients. I've heard this complaint more than once, and I think too that some people choose to go ahead with a permanent implant out of desperation when they should be counselled against it. I believe that placebo effect also plays a role. Even the most grounded of us is so keen for pain relief that it's amazing what our brains can do.

Can they be beneficial? Certainly. I've had a lot of trouble with my unit as you know, but I wouldn't be without it. CRPS causes something called allodynia - where normal touch, or even something like a breeze on the skin causes intense pain. Except in the worst flares, my SCS has all but done away with that. Before I had my implant, I was in the middle of winter unable to put my foot to the ground, no sock or shoe, pants rolled to my thigh. A few weeks after, I was walking reasonably comfortably with crutches.

Just my two cents :)

Laura

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CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Hello Laura, and Jim also.  Laura, I am so glad to here of your experience with SCS units, just as I thought, the trial period is inadequate, I know mine was.  But you and many others have benefited greatly from them.  I really think it is an individual person by person thing.  The benefits to you are priceless and for this I am truly grateful.

Jim, I do agree somewhat, but I am not so sure it is the  doctors and the representatives sent by these companies to sell to the doctors.  I believe most doctors want to do what is best for there patients.  This is not always easy.  They like everybody has big brother looking over there shoulders, DEA, heard of them?  Look the feds are going to want control of any and all things to do with the medicines we get, how much we get and so on.

These are just some facts that the doctors must answer to someone, and then so must we.  Sadly we are at the lower end of the food chain.  So of course we get punished first.  Then there are the posers out there that really make our lives difficult.  I wish as much as the DEA does that they would stay out of our lives.  But life goes on and so do we.

Take care, and thank you both for your valuable input, hope you are feeling well today.

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degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Requiem, when you are talking about generalized pain in joints, muscles or skin, are you talking about pain originating directly from those structures, or also neuropathic conditions causing problems in those areas? If the latter, I'd beg to differ. As I said, I know quite a number of people with SCS units for management of Complex Regional Pain Syndrome (CRPS). Not sure how familiar you are with the condition, but it causes a LOT of generalised muscle and skin pain, and the SCS is a lot of help with that.

It certainly is interesting to have a view from 'the other side' though, so thank you very much for being here and contributing.

Laura

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CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Requim; While I agree with everything you have said here, what would you say to the patient that would do well with the SCS but has had 4 psych exams that say no this isn't a good idea? I don't even understand most of the questions on those tests and the fact that they lump us all together with a "national average" and say they are 80% accurate just doesn't mesh with me.

I have failed back syndrome from three failed back surgeries and have neuropathic pain radiating down both legs. I think that the SCS is a viable option for me and so do 4 doctors. However, everytime I go to do that stupid psych evaluation I fail to live up to what they consider "their standards." I have dealt with every last one of my depression issues, yet I am still told that the SCS will never be an option for me. All because of a stupid psych test???

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I live to "Tame My Pain!"

Do you know I completely forgot I had to get a psyc. doctor prior to being approved for the implant surgery.  I probably forgot because he spent no more than 5 minutes with, and I wish I was exaggerating, I am not.  Yes I totally forgot until I received his bill for service rendered.

Funny isnt it, some are held back due to there psyc. evaluations, and then there are people, might I add, this doctor has done all the psyc tests for the approval of the implant.  Makes you wonder doesnt it?

Now thinking back, the warning signs were all there, the friendly way the reps were with my doctor.  Another thing I have noticed, since about maybe 5-6 months ago, I realized there were not alot of phamlet for the Company selling the doctors and there patients this implant.  Last time I was there, I noticed alot of new phamplets for a new non-intrusive way to help people with carpal tunnel syndrome.  Yes they were everwhere.   Luckily that is one thing I do not suffer from.

Ok my 2cents again.

take care all, hope all are feeling well

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degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Sadly the truth is medicine is big business.  Thats why there is such an uproar from the insurance co. and the doctors who are for the most part, paid by them.  What little they get from the co-pays would not be enough to pay for there first homes, let alone the vacation houses.

I sound (I cant spell the word) synical (ok thats the best I can do) because I am.  I am not sure what the answer is, I know in the UK, and Canada health care is for all, but from what I understand that comes at a price also, the price of waiting for surgeries, etc.  So although I am sure there is a way to make it possible for all the get good health care without suffering through waiting, or not being treated due to lack of insurance, I dont think in my time it will be resolved.

As long as greed is the major player in the business of insurance and health care there will be no changes.  I would go so far as to suggest that the pharmacutical companys are hand in hand with the above mentioned.

In any doctors office I have ever been in, (and I have benefited from this) pharmacutical personnel are everywhere.  My gp whom I went to for 20 years until he took another job (very sad day for me) gave me samples for everything I needed outside narcotic medicines and I really appreciated that, I used to leave there with large bags of medicine for my sinus infections.  It was great, and so was he.  I think I mentioned before, the man never ever let me pay my co pay, even when I had to go on medicare, and the price went up, he wrote off everything I owed to him.  And he did not do this just for me, he had many patients who were poor.  The man took his oath to "First, due no harm" very seriously.

Ok I have run on long enough, take care all, hope everyone is feeling well today.

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degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson