I went to Dr. Rhodes
 

Hi all,,,Just tought I would tell you about my trip to doc rhodes in TX. First I have to tell you he in not a quack. He understands RSD more then any other doc I have met. He Vecctor stimulator is doing great things for MD population and some RSDers. While I was there I met 2 RSDers who had great success with his tx. So far, for me it has not worked but I still have the machine and I am plugging away. If it does not work I can return it for almost the full amount. I am glad I went to see him. Now I will know if this is the tx for me. If you want to learn about his theory you can get the book Pain Banishment on Amazon.
I am continuing to deteriorate at a rapid pace, Muscle wasting in just frightening..I dont' know what will become of me and I am very scared...

Debbie

Very sorry to hear you are not feeling well Debbie, hang in there and be patient and calm. I've talked to doctor Rhodes sometime ago. Very nice fellow but my wife who has RSD and I were skeptical about this machine. Please keep everyone here updated on your progress using this device. I pray it works wonders and delivers you major relief! :)

Hi Debbie,
Thank you for the information on Dr. Rhodes. I am so sorry you are deteriorating with your muscles. Do you have full body RSD? I'm 15 years with full body and internal. I'm working harding on my muscles. For 2-3 months now, am at 2 hours of exercise. It's very slow with weight loss, but is a little progress at a time. I use 1# weights. My Dr. reminded me Monday that swimming was best for me. I used to swim every day and do remember progress. I'm thinking of going back to it.
I know it's scary Debbie. But please don't give up You can make progress. I can't afford it right now, but I used to do massage therapy 1 1/2 hr a week. I know it helped a lot along with physical therapy. Live in Arizona, and when it get's to 80's am going to start walking dailey. Are you mobile?
I have one hand that is crippled-kinda like a claw. Was misdiagnosed, so got pt late.
What do you see to slow down deterioration? I'm doing research for anti-inflammatory foods and vitamins. My Dr. is making up an anti-inflammatory cream for parts of my body that are hot, which indicates inflammation.
Debbie, please know I'm thinking about you along with rest of our rsd family. How long have you had RSD? And when did you notice a faster deterioration of your muscles? Please let us know how we can be of encoouragment to you. Your friend, loretta with soft hugs :grouphug:

TY
 

Thanks so much for your response,,,I have had RSD for about13 years now. It spread following a hip replacement in 2003 and has been relentless since. I do swim but less and less as my muscles get weaker. I also go to massage once a week. I am still working but now have to use a scooter to get around. I can't walk more then about a city block,,,,,I hate this so much~ I know I am singing to the choir here but I feel like WHY WHY WHY did this have to happen to all of us????

Dunno why
 

I am sure we've all asked/screamed this question at the top of our voice toward the heavens, but I've yet to receive a satisfactory answer. I wanted everyone to know though, I was researching a bit and found something that said that vitamin C has some anti free-radical action and the inflammation was due to the free radicals. I've been taking a nuclear power strength vitamin B complex for a while which has a side of vit C and I have not had as much swelling. Give it a try. It's Vitamin World's Stress B Complex with C500. Has 833% of the C you need and a ton of B vitamins. I can really tell when I have forgotten to take them.

We went to Dr Rhodes at his urging to get to Texas as quickly as possible to help my daughter with her RSD pain. Wow, were we shocked at the shabby clinic. His website promised much more than he offered including a special cream and magnets. When we got there, these items which were exclusive to him and important for the success of treatments (according to the website) were 'no longer in use due to supply issues'.
We had to buy the machine with no promise of money back, pay $20 for each protocol change and told to wait wait wait, these things take time.

After speaking to several other former patients I am most unimpressed. We were not offered our money back. Only told we could trade it in for the latest and greatest machine. He has taken RSD of his board and not touts Muscular Dystrophy. After doing 30 min worth of internet research, I see that the MD community is upset with him as well. I went to his Facebook page but you cannot make any comments or start discussions there. It seems like he will only let those patients speak up who have had good results.

He repeatedly would not answer my calls and Texas Blue Cross complained about his repeatedly late filing of claims. I am so sorry to be out so much money for treatment that did not work. As I understand it per the Muscular Dystrophy site, Dr Rhodes now has lawyers going after people who have anything negative to say about the treatment. Sad, with conditions as serious as this, that we are not able to share our experiences, both positive and negative without fear of legal action.

Nice guy, not so great treatment.

Quick note
 

Rhodes is a podiatrist - yeah, a foot doctor - who has been hawking his modified TENS unit since the late 90s. There is a lot cheaper snake oil to be purchased elsewhere.

To those who never went but have comments
 

i completely understand someone posting
a negative experience if that's what they had. What I have trouble with is peolpe who use words like quack, snake oil, just a tens unit, if they've never been there. I went to Dr. Rhodes twice and he saved me from the worst pain I have ever known in my life.

I am so sorry to hear that you are suffering so much! I have had RSD/CRPS for 14 years and struggle daily with weight loss and muscle wasting! I am on 2 and a half times the recommended amount of morphine equivalents of Fentynal and Dilaudid daily. I still have pain! I had 27 blocks until they quit working and caused RSD/CRPS in my back at the injection sites! I am sensitive to light, noise, smell and TOUCH! I don't know what we are supposed to do about the wasting away! I will keep you posted if I find anything out that can help us with this! I was just telling my husband how terrifying it is to be getting so weak that I have a hard time lifting a pan of dinner out of the oven! Oh, I got it in 2001 and I am now 47. It has stopped my life!

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