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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Can anyone help us (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/154990-help.html)

daniella 08-10-2011 01:40 AM

I think you are a very supportive person to him. That is the best you can do for him. Did you do the search at the top of the page here on this STS? That is what I would do.

meekobindi 08-10-2011 05:50 AM

Quote:

Originally Posted by daniella (Post 794473)
I think you are a very supportive person to him. That is the best you can do for him. Did you do the search at the top of the page here on this STS? That is what I would do.


Thank you I do try to be, after all isn't the act of love meant to be a selfless one, wanting & doing all that you can for the other while asking nothing in return, getting more joy from the fact that we have bought a little joy into someone's life. He is my everything, his happiness is my happiness, without him there is no me it's that simple.

I started to search some time back before I became a member here, & there was a conversation between two woman, one wanting to know the pros & cons of the STS & the other lady who knew someone who was licensed to use it, I recall her saying that this woman who was licensed to use the machine was I think either a masseur or a reflexologist but I can't be certain I kept the link but when I went to find it although I found the link the conversation was no longer there, I had hoped it was just moved but maybe the lady stopped being a member or maybe the fact that she had publicly said that she knew someone who was licensed to use the STS put her in the firing line of lawyers I don't know, & although there is many great stories out there there are just as many bad ones too. Which is why I believe that there needs to be some honest & open discussion about the pros & cons of this or any other procedure so that people can make informed choices for them. meekobindi

elijjennings 08-10-2011 10:01 AM

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.

elijjennings 08-10-2011 10:14 AM

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

meekobindi 08-11-2011 06:22 AM

Quote:

Originally Posted by elijjennings (Post 794561)
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 :)

Meekobindi

aweickgenant 01-21-2012 02:24 AM

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!

gabbycakes 01-21-2012 06:49 AM

Quote:

Originally Posted by aweickgenant (Post 843435)
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?

Gabbycakes

ginnie 01-21-2012 11:59 AM

Re: Back to the Dr.
 
Hello Meek, I am so sorry things have been difficult. I would not do anything that seems to make a condition worse. Also to have some device with no directions in its use, would make me very cautious indeed. You do not want anything that would increase the level of pain experienced. I would hope that you would seek another opinion, and maybe go in a different direction. I also had a friend who had the morhpine pain pump. Technically, you are to receive fill ups, before the machine is totally empty, thereby elimating that period of time, where the pain can come back in full force, until the machine is re-filled. The gal that I know who has one is a Vets wife. She never had to experience that between time that was otherwise horrible.
please consider another evaluation, and keep posting here with your concerns. I also consider the cost of that book rediculas. Somebody is asking alot of money for just one book it seems. That sounded fishy to me.
I hope and pray there is a solution to the pain. I know also that you worry about the possibility of having to take morphine. I may have to be on this the rest of my life, and I don't like it eithor, but truely, it is a blessing which I am grateful for. I try to think of it in a possitive way, much like a diabetic that needs insuline for a good quality of life. I really do wish that there is an answer to the pain with another neruologist. The RSD forum here is fantasic too. Take care and I wish you all the best. I am just another member who travels between the boards to try and offer support. ginnie

rsdno 01-22-2012 03:24 AM

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

Dubious 01-22-2012 08:13 PM

Quote:

Originally Posted by meekobindi (Post 794402)
[COLOR="Navy"]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.COLOR]

If you are looking for cheaper pads, I went on Dynatronics website and looked at a picture they have of the STS being used. The pads appear to be a standard 1" round gel-type pad that is commonly used for EMS units. If that is so, then all one needs to do is contact their chiropractor or PT and order a package or three of generic pads (they are cheap and work just fine) from a company like Meyers Distributors. For just pads, you might even be able to get the distributor to sell directly to you.

Now when it comes to buying a machine or getting instructions to use one, it is true that most if not all chiro's or PT's will have to physically see you to legally dispense a machine. It is not a "gimmick" but it is the law for which the doc or PT can go out on the malpractic plank by not doing so!


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