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In Remembrance
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Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
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In Remembrance
Join Date: Nov 2006
Location: SE Kansas.
Posts: 374
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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
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