Quote:
Originally Posted by ballerina
Hi all, I have been lurking for about a year and must now post to share the success of a deep brain stimulation treatment that I recently had. Writing is extremely difficult for me due to cognitive impairment by CRPS so please bear with me. After the frustration of one more physician suggesting I see a psychiatrist for what I, through my own research knew was autonomic and limbic dysfunction directly related to CRPS, I did what I have done for two years, my own research to help myself. Since I am already doing mirror therapy and graded motor imagery to address cortical reorganization, I began looking at ECT and related treatments. I came upon a clinical trial on tCDS (transcranial Cortical Deep Stimulation. Since I was too late to join the clinical trial I requested to receive the treatment on an outpatient basis. I went to Beth Israel in New Your City the first week in February and received the treatment for five days. The down side is that my health insurance did not cover it because it is experimental). The up side is that I had a dramatic positive response to the treatment: Increased mental clarity, decrease in daily pain range from 5 to 8 out of ten to 2 to 6 out of ten, increased range of motion, improvement in balance and coordination, decrease in ice cold limb, elimination of tremors, bladder problems returned to normal and many more subtle improvements. This treatment is non-invasive, painless and there are only minimal side effects (fatique, headache) which quickly vanish after treatment. There are no long term side effects and the treatment may be repeated indefinitely. I was cautioned that this treatment, like ketamine and blocks, wears off over time. I jokingly told Drs. Knotkova and Cruciani that I should get a 9 volt battery, some electrodes, sponges and saline solution and treat myself. My plan now is to either convince my PM physician to become trained and offer the treatment in his practice (in my dreams) or purchase the equipment and treat myself. The Research conducted by Dr Helena Knotkova and Dr. Ricardo Cruciani is due to be published in March. When I asked how soon this treatment would be routinely available to patients I was told 5-10 years. That's not good enough for me.
Getting very tired so I must go. Will post other non traditional and experimental treatments that have greatly help me. Many thanks to the useful info I have received from this community. I feel like I already know mike and greatly miss the input of Vic who is deceased. Hope this helps!!!!!
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Dear Ballerina -
My goodness, you
have been hanging around for a while! So how far back do we do go, as in, does the name John Lester mean anything to you? In any event, we are honored by your (re?)emergence.
You raise the matter of cognitive impairment by CRPS. In that spirit please forgive me for having literally overlooked your post Monday afternoon. I swear, I didn't see it earlier, which is too bad because it is a very small world. In late 2007, I was working on an article on the use of RUL ECT for CRPS when Jim Broach suggested that I speak to Dr. Knotkova about her work on tCDS. She was very kind and provided me with some articles on the subject - please see the attached - but to which I made only passing reference in my piece, which Jim was kind enough to arrange to have published. Right Unilateral Electroconvulsive Therapy Treatment for CRPS, Michaels F Jr.,
Pract Pain Manage. 2008 March, ONLINE TEXT @
http://www.rsds.org/2/library/articl...haels_CRPS.pdf
Smaller world still, over the last few months I’ve been trying to get an fMRI to fully access the neurocognitive hit of nearly 10 years of CRPS, which I perceive as an almost complete loss of executive functioning - on top of preexisting "pure" ADD - and a lot of short term and working memory loss. See, Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, et al,
J Int Neuropsychol Soc. 2010 May;16(3):566-73, Epub 2010 Mar 19, ONLINE TEXT @
http://www.rsds.org/2/library/articl...ychol_2010.pdf So, my doctor suggested a radiology practice affiliated with a local neurologist who is now using a T-3 fMRI to calibrate his rTMS treatments: repetitive transcranial magnetic stimulation.
http://en.wikipedia.org/wiki/Transcr...ic_stimulation Unfortunately, because their fMRI “protocols” were designed to locate only areas of pain activity, as opposed to cognition, the radiology practice told me that it would be unable to perform any functional analysis of cognition. And where they claimed only that 60% of those undertaking the (experimental and uninsurable, except for depression) rTMS treatments received a 50% reduction in pain lasting approximately 14 months, I took a pass where I had once been quoted better odds on a 5 – day Lidocaine infusion that did nothing for me. And note that, at least, based upon the attached correspondence to the
British Journal of Psychiatry from Fregni et al (2005), TMS is significantly more expensive than tCDS.
I have no idea whether the rTMS would have had cognitive effects, where the magnetic force would have been precisely “aimed” only at those cortical areas associated with pain. Maybe I made the wrong call. As it is, I’m attempting to have the fMRI set up at UCLA instead.
And of course, I’m thrilled by your report, as well as knowing that after at least five years of effort, Drs. Knotkova and Cruciani’s work will be published next month. That’s really great, especially with the promise of affordable care in tCDS. Good times!
It’s funny, I’ve gotten more mileage out of some recent “stretching” PT with an emphasis on “nerve gliding” than anything else I can recall in the last few years. [If anyone in LA wants a reference, drop me a PM.] Sometimes it’s the subtle tweak that makes all the difference. And as interesting as it to speculate that one day we will be able to harness the Large Halcyon Collider in the pursuit of the ultimate mysteries of CRPS, it is so much more comforting when something on a human scale can make all the difference. (Suddenly, I am reminded of watching Nureyev from a distant balcony, thirty years ago and then past his prime, holding the hall spellbound with a perfect turn of his ankle.)
Mike