Quote:
Originally Posted by Nanc
I agree with Rae. In addition to myself, I am sure there are others who do not appreciate being on your list. A revision could be necessary for any reason, not just for equipment failure. My revision was not due to equipment failure, leads migrate - that can be because of human anatomy. RSD spread could be caused from a number of reasons. I have had spread, from injuries and a shoulder surgery.
Everyone comes here for input and support and appreciates what all have to offer. I think that when you post information, it should be current and not outdated. The FDA letter is old, companies make improvements and upgrades when there are problems. St Jude has. My rep told me about the battery problem and that it was fixed. You shouldn't scare people with old info. You also shouldn't tell people that they should find a new doctor if their doctor doesn't recommend the same treatment that you feel is the correct one as you have in other posts.
I finally have a great doctor who I am very comfortable with, he recommended two SCS to be implanted as the last resort for me after many other failed treatments. Never recommended tDCS. I did my research on everything and I am fine with my choice and my doctor. I am able to continue working as I regained use of my hands...this is far from failure.
Nanc
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I am sorry you are unhappy with being so listed. Once again, I merely listed what folks reported regarding Spinal Cord Stimulators being used to treat Complex Regional Pain Syndrome resulting in failure, revision and or spread of the CRPS. The reader of the posts may decide for themselves the level of risk they are willing to take. My list is only a partial list since I only spent a few minutes searching.
Regarding my posts about the equipment failures, many folks would like to be as thorough in researching medical devices put into their bodies as they would the safety rates of cars they are buying.
It is not surprising that your physician did not suggest tDCS prior to SCS implantation. Hopefully it was not due to financial consideration but rather ignorance of the procedure. There is now training in the administration of tDCS available to physicians.
The Institute for Noninvasive Brain Stimulation of New York, Beth Israel Hospital
www.newpaintreatment.org/
I was impressed when I recently checked the website. Now they are actively seeking patients for tDCS treatment of pain. When I sought treatment there this time last year I had to work to get in. Now they are offering training in tDCS to physicians, which includes its application for CRPS.
2) There is a brand new Brain Stimulation Clinic in Atlanta, that just opened this month.
www.transcranialbrainstimulation.com/
This is offered through a private pain treatment clinic operated by Dr. James Fugedy, who, interestingly enough at one time recommended SCS for CRPS but stopped doing them because of the high failure rates. He might be a good resource for any physician seeking to learn about tDCS.
3) The Brenson-Allen Center for Noninvasive Brain Stimulation, Harvard Medical School.
http://tmslab.org/
This facility offers specific physician training in the application of tDCS to Complex Regional Pain Syndrome and related form of neuropathic pain.
Do I think CRPS patients should be informed of and offered all non-invasive and effective treatments prior to SCS implantation? You bet! Do I think if all options are not exhausted first CRPS patients should seek the opinion of another doctor? You bet!
It is not that I don't feel SCS is a "correct" treatment for CRPS. When I called the manufacturers and ask for research demonstrating the safety and long term effectiveness of their product in the management of CRPS, they could not provide that to me.