Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 08-09-2011, 03:24 PM #1
daniella daniella is offline
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This doctor should be sued. For not being ethical. First I have a problem with doctors selling products. Rsd and our pain is not a retail service but a serious medical condition. Is this Dr R a salesman or doctor? Then to sell it to you without taking you on as a patient is not ok. Then to talk about law suits when everyone should be open to giving back feedback both negative and positive is insane. I would think there is some medical board one could file a complaint
With RSD it is important to keep stress down. Which is like impossible but in ways you can anyhow. This just adds stress. Have you looked at other options for pain relief? Ketamine infusions,different meds,some other alternative like HBOT? Has you r husband seen a pain doctor? Is he on meds? Trust me i have times I beg to die from pain too and I know the heart break that has on my family. I know it must be hard for you to watch your husband as well. People do get to a better place with RSD but it takes finding the right treatment. Everyone is different so what impacts one may not anohter. I am very sensitive to weather as well so can relate as I sit hear swelling with high pain from humid/storms.
If I can help in any way I am an email away. Are you in the US?
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Old 08-09-2011, 04:30 PM #2
betsykk betsykk is offline
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My daughter would be given different protocols by Dr Rhodes every few weeks. He does not share this information with you but instead he will fax you the newest protocol to try. Have you tried calling his office and tell them that you have the machine? Maybe someone would send you some protocols but I tend to doubt it.

Like I said, my daughter was in agonizing pain. Ketamine infusions have given her great relief and are approved by the FDA for breakthrough pain. Has Dr Rhodes latest machine been approved for pain management? I would start looking into another method of treatment if you can't get ahold of protocols.
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Old 08-09-2011, 09:20 PM #3
meekobindi meekobindi is offline
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Originally Posted by betsykk View Post
My daughter would be given different protocols by Dr Rhodes every few weeks. He does not share this information with you but instead he will fax you the newest protocol to try. Have you tried calling his office and tell them that you have the machine? Maybe someone would send you some protocols but I tend to doubt it.

Like I said, my daughter was in agonizing pain. Ketamine infusions have given her great relief and are approved by the FDA for breakthrough pain. Has Dr Rhodes latest machine been approved for pain management? I would start looking into another method of treatment if you can't get ahold of protocols.
Yes we have tried but again we were told that without him being an existing patients it's against the law for him to help. We would have even been willing to see someone locally if he didn't want to share the information outside medical circles. So that was why he wondered if anyone who has used the machine & has RSD/CRPS particularly in their feet would be willing to share information regardless of whether or not it works. Since it seems so many doctors out there either refuse to believe, don't want to help or unless it comes down to the almighty dollar, no one but other patients & their families know the extent of the heartache it causes. Now it seems that there are those who are being gagged not to say anything especially those that have had a bad experience. But how can others make an informed choice without ALL the relevant information, that would be like going on a roller-coaster ride that isn't safe, how can one make that call when there are vital parts that are not allowed to be discussed openly. My partner & myself are not interested in why this kind of action came about all we would like is someone ANYONE who may be able to help me help the man I love. I have no idea whether or not this latest machine has approval yet or not. I guess that information is not privy to those who are either dissatisfied customers or not patients.
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Old 08-10-2011, 10:01 AM #4
elijjennings elijjennings is offline
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I've never heard of this before you mentioned this treatment, and I thought I had read everything. I have a tens unit that seems to be based on the same theory, of a small electronic pulse to help relieve the stress on the muscles. I just couldn't imagine the pain it would cause me to put this on an area with RSD. I am able to use it on unaffected areas, that get muscle pain from overcompensation, etc. As my RSD is spreading I am not able to use it much at all.
The articles I've been reading on the machine say it's very much based on acupuncture and reflexology points. These are very exact points on our body that take years of training for people to learn. I think it would be a little scary just hoping you get the right points and then allowing an electrical current to flow.
Also I had a spinal cord stimulator implanted about six months ago. I can not use it at all now. The electrical stimulation went to the wrong nerves and caused my RSD to spread to those areas quickly and intensely. And this was under the supervision of a neurosurgeon and a pain management doctor.
Is it possible to have your local pain doctor contact Dr. Rhodes about working out a protocol through him? I worry for your husband if electric currents are being sent through the wrong acupressure points. Have you tried contacting any physical therapists in your area that may have experience with this machine in the past? Also have you tried finding a used copy of the book on e-bay or a similar used site?
I wish you all the luck. You've peaked my interest as I've never heard of this before. I will write back if I find any information that may help you.

Take care.
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Old 08-11-2011, 06:22 AM #5
meekobindi meekobindi is offline
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Quote:
Originally Posted by elijjennings View Post
I've never heard of this before you mentioned this treatment, and I thought I had read everything. I have a tens unit that seems to be based on the same theory, of a small electronic pulse to help relieve the stress on the muscles. I just couldn't imagine the pain it would cause me to put this on an area with RSD. I am able to use it on unaffected areas, that get muscle pain from overcompensation, etc. As my RSD is spreading I am not able to use it much at all.
The articles I've been reading on the machine say it's very much based on acupuncture and reflexology points. These are very exact points on our body that take years of training for people to learn. I think it would be a little scary just hoping you get the right points and then allowing an electrical current to flow.
Also I had a spinal cord stimulator implanted about six months ago. I can not use it at all now. The electrical stimulation went to the wrong nerves and caused my RSD to spread to those areas quickly and intensely. And this was under the supervision of a neurosurgeon and a pain management doctor.
Is it possible to have your local pain doctor contact Dr. Rhodes about working out a protocol through him? I worry for your husband if electric currents are being sent through the wrong acupressure points. Have you tried contacting any physical therapists in your area that may have experience with this machine in the past? Also have you tried finding a used copy of the book on e-bay or a similar used site?
I wish you all the luck. You've peaked my interest as I've never heard of this before. I will write back if I find any information that may help you.

Take care.
As Dr Rhodes is a podiatrist he would well know & understand the use of both acupuncture & reflexology, there are two sides to this machine, the one I speak of here & the other side is a T.E.N.S unit. No we haven't contacted a physical therapist to see if anyone has had anything to do with the STS machine, you bring up a good point thank you. We did eventually gain a copy of the book & from my opinion it's more of a outline of the capabilities of the machine & a kinda thank you from the author to Dr Rhodes. There are those that this machine has undoubtedly helped, but without the kinda money that would be needed & I have no doubt it could send someone to the wall, very few people have that kinda money just laying about, by the time many hear of this or some other form of treatment they more than likely have drained whatever savings they may have had. Thank you for your kind words & thoughts they are appreciated

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Old 01-21-2012, 02:24 AM #6
aweickgenant aweickgenant is offline
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Exclamation RSD, Dr. Rhodes and STS machine

As a new member am not sure if there are more current posts regarding this topic but having arrived in Texas about 1 1/2 months ago (today:1/20/2012) and my daughter being a new patient I can tell you briefly what led us here and what we have learned since arriving. Though a new acquaintance we contacted several people who had been seen by Dr. Rhodes and either were in remission or a much lower level of pain that they were able to rebuild their lives. We have been running out of options, having used both inpatient and outpatient at top rated RSD programs, numerous meds and read all the research (my husband and I both PhD researchers specializing in pain), suffice to say short of the coma and ketamine infusions, we tried everything we have come across, to no avail. We arrived in Texas to rave reviews from unbiased & impartial people who have never met the man, but new firsthand patients of Dr. Rhodes. For example, here at the Ronald McDonald House (reputable charity housing critically ill children & families), where we're living, 1 long term employee has seen at least 5 kids leave either in remission. My daughter has had full body RSD from start & is too sensitive for the electrodes, so doc is using magnets to do similar treatment as the STS/VECTTOR machine, until her sensitivity decreases. We're not a success story yet, but I can speak about the doctor himself to say, rarely have a met a more personable & caring person, let alone a doctor - and I have been around doctors my entire life (e.g., father, ex-husband, past/present coworkers, and all those I have seen personally for my large family & daughter w/RSD).
So “meekobindi”If you have bought the machine, then being his patient will cost you substantially less )1st exam = $850 & each office visit is $100/day (you’ve already paid for machine = $4500), and who knows maybe your husband will be one of the lucky ones who leaves in a few weeks a new man. Besides, I know you if you call he will return your call within a few days & he will talk your ear off!
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Old 01-21-2012, 06:49 AM #7
gabbycakes gabbycakes is offline
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Quote:
Originally Posted by aweickgenant View Post
As a new member am not sure if there are more current posts regarding this topic but having arrived in Texas about 1 1/2 months ago (today:1/20/2012) and my daughter being a new patient I can tell you briefly what led us here and what we have learned since arriving. Though a new acquaintance we contacted several people who had been seen by Dr. Rhodes and either were in remission or a much lower level of pain that they were able to rebuild their lives. We have been running out of options, having used both inpatient and outpatient at top rated RSD programs, numerous meds and read all the research (my husband and I both PhD researchers specializing in pain), suffice to say short of the coma and ketamine infusions, we tried everything we have come across, to no avail. We arrived in Texas to rave reviews from unbiased & impartial people who have never met the man, but new firsthand patients of Dr. Rhodes. For example, here at the Ronald McDonald House (reputable charity housing critically ill children & families), where we're living, 1 long term employee has seen at least 5 kids leave either in remission. My daughter has had full body RSD from start & is too sensitive for the electrodes, so doc is using magnets to do similar treatment as the STS/VECTTOR machine, until her sensitivity decreases. We're not a success story yet, but I can speak about the doctor himself to say, rarely have a met a more personable & caring person, let alone a doctor - and I have been around doctors my entire life (e.g., father, ex-husband, past/present coworkers, and all those I have seen personally for my large family & daughter w/RSD).
So “meekobindi”If you have bought the machine, then being his patient will cost you substantially less )1st exam = $850 & each office visit is $100/day (you’ve already paid for machine = $4500), and who knows maybe your husband will be one of the lucky ones who leaves in a few weeks a new man. Besides, I know you if you call he will return your call within a few days & he will talk your ear off!
So sorry to here about how your daughter is suffering. I hope the STS Treatments continue to help her. I can not give you any input on the treatments I have never done one, but I can say I have attended the RSD Walk in NYC for the past 3 years and there's always a group of people who support him and the treatment.

If you don't mind me asking as pain researchers I was wondering what your opinion was on ketamine?

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Old 08-10-2011, 10:14 AM #8
elijjennings elijjennings is offline
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Not sure if this is the book you are looking for but perhaps will help you find some answers. Best of luck to you.

http://www.rmrsd.org/Bookstore.html
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Old 01-22-2012, 03:24 AM #9
rsdno rsdno is offline
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Default In Oregon There Is Help

Hi is your husband on SSDI and there are Doctors that take it in Tennessee i had to pay $100 each visit but got Avinza (best Time relief Morphine)if a good doc would help I know of good ones in many states and Imagine other people here know many more I have had RSD for 43 years if I can help write me I think my addy is on here or if not just answert me and I will give it to you your husband is very lucky to have you
Gentle Hug rsdno
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Old 08-09-2011, 08:57 PM #10
meekobindi meekobindi is offline
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Quote:
Originally Posted by daniella View Post
This doctor should be sued. For not being ethical. First I have a problem with doctors selling products. Rsd and our pain is not a retail service but a serious medical condition. Is this Dr R a salesman or doctor? Then to sell it to you without taking you on as a patient is not ok. Then to talk about law suits when everyone should be open to giving back feedback both negative and positive is insane. I would think there is some medical board one could file a complaint
With RSD it is important to keep stress down. Which is like impossible but in ways you can anyhow. This just adds stress. Have you looked at other options for pain relief? Ketamine infusions,different meds,some other alternative like HBOT? Has you r husband seen a pain doctor? Is he on meds? Trust me i have times I beg to die from pain too and I know the heart break that has on my family. I know it must be hard for you to watch your husband as well. People do get to a better place with RSD but it takes finding the right treatment. Everyone is different so what impacts one may not anohter. I am very sensitive to weather as well so can relate as I sit hear swelling with high pain from humid/storms.
If I can help in any way I am an email away. Are you in the US?

Please let me stress one thing here this Dr Rhodes guy was NOT the one who we got the machine from, we purchased it with from the company who makes or at least retails them. To have seen this Dr Rhodes guy it was goin' to cost us well over $10,000.00US & we just didn't have that kind of money we used every dime we had just to purchase the machine at $4,000.00US & the pads alone are not cheap & I know of nowhere else that sells them apart from the company who makes them, & if they did they would more than likely cost a whole bunch more.
My significant other has tried virtually everything available to him, bar the Ketamine Infusions, & pain infusion pump, & of course the Ketamine Coma procedure which is out of reach financially, or he would even take that risk even though the stakes are high, the pain infusion trail he had he had a bad reaction to where once it wore off unlike the slow release morphine he takes now, left no residue so when the pain kicked back in it did so very swiftly & violently. He was having a lot of nightmares too of things that are better left buried, it made him feel like something was eating his flesh alive, & gave him intense anxiety attacks, the sweats & the shakes.

He has seen many pain doctors & this last one told him that liquid morphine is NOT addictive if that's the case then why is it NOT available to just anyone.Why are there so many addicts the world over if it is so harmless. All in all we are getting nowhere fast.
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