I've run out of all options and I'm considering a screening test with Medtronic's Intrathecal Drug Delivery Therapy. It will be The SynchroMed System or The Isomed System. I'd like to hear from those of you who have tried either system. I'd appreciate your input.

I've tried all the medications, 2 nerve blocks, 3 radio frequency ablations, plastic surgery and acupuncture. I may try cold laser treatment if my doctor approves; otherwise I'm down the morphine pump.

For those who don't know me, I lost 2/3ds of the middle finger on my left hand, 6 years ago. It was ripped off by the side view mirror of a truck. I was holding a car door open for a friend of mine. The right view mirror of the truck broke off on my hand. So much for doing a good deed for a friend of mine.

Anyway, I'd really appreciate hearing from those who have tried or are trying the implanted morphine pump. Thank you.

Bruce

Hello there,

I have a Medtronic intrathecal pump---please feel free to ask away.
Look forward to being of assistance if I can

Regards
Tayla

and had NO response one way or the other................but each and every one of us may have different reactions..................

good luck.................cant offer anything of the pump tho............my husband has the medtronic stimulator, not a pump................

Hi bg,

I want you to know that I am working on a reply (for whatever that's worth)...Vic

Hi Bruce,

I am working at gaining weight so that I can trial for the intrathecal pump: but not for my RSD pain. It is for nerve injuries at and inside the spinal cord.

Despite no direct experience, I think my input might be useful to you because of my 12 year experience with RSD and ten years researching it and participating in different RSD chats and forums. In this experience, I don’t remember anyone not reporting significant pain relief after having an intrathecal pump installed.

There are, however, a couple of things I think you should consider in making this decision:

1), “The pump” can only provide better pain relief with fewer side effects (especially cognitive issues and constipation); but it does not cure or stop tissue damage; small fiber nerve loss, atrophy, motor deficits, osteoporosis; etc.

2), Symptom migration (or spread), can still occur, and a “pump” installed at the cervical spine won’t do anything for leg or foot pain. A second pump would have to be implanted at the lumbar spine. Adjustments (at least) would be necessary to accommodate any future symptom migration.

Before making a final decision, however, I urge you to consult with a vascular surgeon. On a continuum of interest v. disinterest, these physicians are literally poles apart from RSD “experts” when it comes to cyanosis. They are extremely interested in the topic.

I think that if a vas surgeon examined you, he/she would be very receptive to the idea that RSD may be an ischemia-reperfusion injury. If I’m right, this sort of physician would probably suggest hyperbaric oxygen (HBO) as the most appropriate way to at least provide much needed oxygen to the cells, and to promote stimulation of vaso-endothelial growth factor (VEGF); which is necessary to develop new microvascular systems (MVS) to replace those destroyed by IRI.

Attorneys, I understand, are better able to pay for medical tests and examinations not covered by health insurance policies that regular wage-earners, so you could be a trail-blazer at this forum, and perhaps help others here, by seeing a vascular surgeon and reporting what you learned. Allen has reported conversations with two such physicians and tells us that both agree this could be an IRI. A third opinion could be the “charm”; who knows?

I look forward to your reply, and hopefully, your report…Vic

"I think that if a vas surgeon examined you, he/she would be very receptive to the idea that RSD may be an ischemia-reperfusion injury. If I’m right, this sort of physician would probably suggest hyperbaric oxygen (HBO) as the most appropriate way to at least provide much needed oxygen to the cells, and to promote stimulation of vaso-endothelial growth factor (VEGF); which is necessary to develop new microvascular systems (MVS) to replace those destroyed by IRI."


Vicc.. are you saying in the above part of your post that Bruce might not have RSD??? Im confused as to what you are saying here......I am also scheduled to have a pain pump but have put it off for a month, but my pm doc is doing the surgery and did both my PNS and SCS with out any vasc surgeon. He disected all the way down to my sciatic nerve in my leg to get the PNS hooked up?? Im again not sure what you are saying as to why he should see a vas surgeon and also that it might not be RSD... ??

Amber

Bruce,

I have had my pump for many years now , initially it was inserted for RSD in my lower limbs so the catheter into the intrathecal space was inserted into my lumber spine. Since spread I have had a further catheter inserted into my thoracic spine to accommodate the pain in my upper body. There is just one pump in my abdomen with a two catheter. I have the pump refilled approximately 5 weekly and am on Morphine 10mgs/24hrs. It does not sound like a high dose as compared to what some people may take orally or IM but that is the beauty of the pump, you can actually reduce your opiate intake without losing out on pain relief.
I believe if not for my pump I would not be here, sounds melodramatic but it is a fact so I would definitely recommend a trial if it is suggested to anyone.
My pump and extra catheter were inserted by a neurosurgeon and my pain physician after a trial over 5 days in which they trialled several several mixtures PLUS an placebo dose of saline on one occasion.
If you can not pick which is the saline then you do NOT get the pump.
For me it was with no shadow of a doubt which one was my placebo--it just didn't work on my pain but one other chap who was having a trial at the same time failed by saying that he got pain relief from the saline. It is too big an operation and too much commitment is needed to have an intrathecal in that is not doing the job or that is not needed.
Please feel free to ask any other questions regarding the operation, I am here to help if I can
regards Tayla

Hi Amber,

Sorry for the sloppy writing and thanks for catching it.

The sloppiness came from the fact that I’m working on a series of posts showing ischemia, caused by a fairly well-understood disorder called ischemia-reperfusion injury, explains all of the signs and symptoms of RSD: that RSD is ischemia-reperfusion injury. I transferred that conclusion to this thread without laying any foundation.

I chose Bruce’s thread because he is an attorney, and thus likely to have significant experience in understanding the principles of research and be able to cut through it to find its essence more easily. The fact that attorneys are often better-off financially than most of us made me more hopeful that he could spend the money for a vascular surgeon consult when his health insurance company refused to pay because RSD is believed to be a neurological disorder.

I’m gonna use your question to add another suggestion for Bruce: Take a look at Linnmarie’s thread Aldolase, in which she mentions that it is a glycolytic enzyme; which means it is possibly the result of glycolysis (anaerobic metabolism), which only occurs when cells are deprived of oxygen (such as during ischemia).

In fact, I hope others here will have their aldolase plasma checked. If it is higher than “normal”, that is evidence that that my hypothesis about the nature of RSD may be correct.

I hope this clears up the confusion I caused…Vic

Thanks for the explanation but...

I just wanted to clear up that i have great insurance.. and yes it even paid for me to see a vasc surgeon!!! even with the diagnosis of RSD. I saw a vasc surgeon early on in my RSD bc of the spasms in my legs and the drastic color changes and my pm doc thought maybe he could do somethng... I am on medicare with a bcbs suppliment now, but at that time had a HMO which im sure you know that they can be jerks about letting pt's see diff docs but just thought it wasnt right of you to assume that just bc attorneys make good money that they have better insurance or that they have the extra to see a specialist.. im sure any of us on this board would pay out of pocket to see a doc that would help thier RSD!!

"that RSD is ischemia-reperfusion injury" how do you explain this to RSD'ers that got RSD from like a surgery or even a stubbed toe or a blood draw?? RSD is the brain sending off wrong signals... how do you get this ??

All.. ok most RSD patients have ischemia.. bc thats what causes our color changes and bone changes. Im not sure what you are saying when you call it ischemia-reperfusion injury. Are you saying that RSD isnt a disease or shouldnt be ?? I am just trying to get what you are saying in your post so it doesnt confuse us... bc its confusing me and i am or was in the medical field.


Amber

Hi Amber,

I'm not quite sure where you're coming from when you talk about your insurance, but I do see what you mean about the implication that someone with RSD wouldn't have an essential test just because they can't afford it: Unfortunately, it's true. There are some medical tests and procedures that might be helpful, but that we can't afford.

As far as picking a lawyer, I'm a pragmatic former social worker and know that atty's have more money than most of us; enough, even to see a specialist or have a test that counfirms IRI. I suspect most health companies would resist paying a vascular surgeon without some tentative diagnosis. I'm hoping Bruce will be able to read the 2nd post on my thread Facts you...about RSD, and become agnostic enough to bet some money on my hypothesis: and him possibly getting better.

"that RSD is ischemia-reperfusion injury" how do you explain this to RSD'ers that got RSD from like a surgery or even a stubbed toe or a blood draw?? RSD is the brain sending off wrong signals... how do you get this ??

What I'm doing is a sort of Gestalt method of persuading some of the most important people in the world to me: people right here, you, that RSD is IRI. Back at BrainTalk I wrote thousands of words explaining the entire IRI process, and people gave up trying to understand because I hadn't given anyone a reason to want to learn about IRI; this time I'm trying to give the reason's first.

The first post on my Facts thread described exactly how ischemia can cause allodynia in RSD. My next post will describe in precise detail why ischemia is the only "quiet" cause of cold skin and painful hypersensitivity to cold that makes moderate temperatures feel almost like frostbite. Then I will show how ischemia can cause every other sign and symptom of what I'm gonna refer to from now on as RSD/IRI.

After that I will begin to explain IRI: How it was first identified as resulting from surgical trauma, and thought only to involve internal organs; to the point that it has now been identified in skeletal muscle. I'll show why no one has yet noticed how similar RSD is to IRI: IRI people are thoracic surgeons; they're not interested in RSD, and vice-versa.

I hope that as my posts continue, more people will start thinking outside the neurological box. One reason I'll give for getting out of that box is that RSD "experts" won't say cyanosis. Most of us know that this disease comes with cyanosis, so why won't the "experts" talk about it. Yup, conspiracy theorists, I'm with you on this one:

They're hiding something. What are they hiding? The fact that there is no neurological explanation for cyanosis. That is an inconvenient fact they would rather conceal than confront. Cyanosis is proof of RSD and it isn't caused by nerve damage; it's just too much for them to bear.

Once outside that box, you may begin to think that if some of RSD isn't caused by nerve damage, maybe none of it is. Maybe whatever causes the rest of RSD also causes the nerve damage.

You have already seen one way that ischemia causes nerve damage, keep reading my posts and I think I can convince you.

IRI is a disease process that begins with a physical trauma, which is followed by the non-specific immune response (NSIR): They immune system's response to pathogens and to cell debris in the blood. If you want to learn more about the NSIR, just type those letters into a search engine.

IRI involves an increasingly widening area of inflammation that can end suddenly or can eventually cover the entire limb. This inflammatory stage is followed by cyanosis that can approximate the size of the inflammed area. This change doesn't come suddenly, but over time almost all of the formerly inflamed skin becomes cyanotic.

IRI is an NSIR gone out of control, and it is only known to happen when cell debris alone is found. It took more than two years of systematic research before I learned of, and enough about IRI to begin posting about it at BrainTalk. I bored everyone to tears. It will take a while this time; but I hope I can capture your attention first.

I'm hoping that this change in tactics, showing why RSD could be IRI, will lead some to look into IRI more fully. If you do, I know that you'll reach the same conclusion I did: RSD is IRI.

The ultimate point of all this is that RSD isn't treatable; IRI is...Vic