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Old 07-20-2015, 11:52 PM
Pythagoras Pythagoras is offline
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Join Date: May 2013
Posts: 2
10 yr Member
Pythagoras Pythagoras is offline
New Member
 
Join Date: May 2013
Posts: 2
10 yr Member
Default RSD/CRSPS/Remission

Hi All
I've never posted before but my experiences may provide some insight as I am a RSD/CRPS sufferer who is now in remission. I also attended Dr Rhodes clinic and used his vecttor treatment.
Firstly, the vecttor machine did not cure or have much effect on my CRPS.
By the time I saw Dr Rhodes in 2012 I had had CRPS for 3 years. Despite the many doctors I saw it went undiagnosed a long time and progressed rapidly following an injury to my arms. I had aggressive full body CRPS (wheelchair bound) by the time I attended Dr Rhodes clinic. He seemed a knowledgeable and compassionate clinician however the treatment had little effect on my pain and I believe my CRPS was just too severe and widespread for the treatment to be significant. I did however see other patients in the clinic who were having positive effects. Most of them seemed to have CRPS which was localised to a small area (ie limb).
Prior to Dr Rhodes I had tried everything. Pain meds, neuropathic pain meds, magnesium infusions, physio, graded motor imagery, acupuncture, meditation...the list goes on. In retrospect, any attempt to do physio & push through the pain only exacerbated the CRPS.
My situation deteriorated until I was in 9/10 level pain and could not move or feed myself & now had severe depression. I knew a radical treatment was required. With the help of family I researched and came across an article - 'Treatment of CRPS with ECT' by Wolanin & Schwartzman. It sounded very similar to my case and I found many research papers detailing cases where electro convulsive therapy had rapidly reversed neuropathic pain.
Due to the severity of my CRPS and given I had no other options, I made the choice to undergo bilateral ECT. My doctor and specialist were reluctant given the controversial nature of the treatment but eventually consented due to my physical deterioration (severe muscle wasting by this stage).
I initially had 9 ECT sessions over 3 weeks. The effect was dramatic. By the second treatment my pain dissipated dramatically. Level 9 pain down to level 2. I could feel the pain disappearing from my limbs immediately after treatment. Over the next year I had maintenance ECT every 4-6 weeks. My last ECT treatment was in 2013 and the CRPS has been in complete remission since then. It seems as though the ECT has completely rewired the way my brain processes pain signals - back to normal.
I am now mobile and I no longer get those terrible burning flare ups any more. I still have some wasted muscles though and this is gradually improving with physio.

I should say that although this treatment worked miraculously for me and I had the full support of my doctors, I am not advocating that this is the right solution for all CRPS sufferers. The progression of my CRPS bore a striking resemblance to that of the patient in the Wolanin article, and subsequently the treatment had a similar effect. Also, ECT is a radical treatment and there are side effects involved. Fortunately I had no pre exisiting medical conditions and only had some minor memory loss from the treatment which has now rectified. The treatment itself is painless and is still an effective and frequently performed treatment for depression. Interestingly, when I spoke to the ECT nurses, they told me that many of their patients who had ECT for depression also noticed a decrease in chronic pain levels. They also mentioned ECT was used frequently in geriatric patients due to its reversal of Parkinson's symptoms.
I really believe that effective treatment of CRPS/RSD involves changing the way the brain processes pain. I have heard that there are some positive results for neuropathic pain being seen during trials of trans-cranial magnetic stimulation. Similar principal to ECT but far less invasive and more localised treatment. Hopefully there will be some advances in this area
I will try to check the forums on a regular basis and if anyone has any questions for me feel free to ask.

P
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"Thanks for this!" says:
happygirlpa (07-23-2015)