NeuroTalk Support Groups - View Single Post

meekobindi · 08-08-2011, 05:56 AM

Hello I am fairly new to this site. My significant other has RSD/CRPS along with diabetes & we are asking for help. Please forgive me for being so presumptuous I am wondering if anyone out there might be able to help me, after looking into the abilities of the STS machine this Dr Rhodes guy touted about, seeing at the time a lot of great comments both on the forum site & other websites all encouraging & virtually nothing of a negative nature especially after reading part of the book Pain Banishment, that is online that is selling on the Amazon site for $425.00 if that IS the price of this book we could never afford it at that price, that is outragous. But it was on this & other information we had found that got us both interested in the STS Machine in the first place, & the fact that we found information that stated Dr Rhodes was intending to see the STS rolled out so that you could see someone closer to you & via video linkup he would tell the phyisian what to do what protocols to use on the patient, so armed with all of that we felt it was something worth pursuing but as yet to my knowlege this has not been done. So we don't know what to make of that.

For at that point in time he was staring down the barrell of reluctanly getting a pain pump & he didn't want to go down that path, he had a bad reaction to the pump trial injections, both physically when the morphine wore off & unlike the slow release morphine meds he currently takes there was no residue left in his system, so when it wore off the pain just hit & came back with such forceful vengence it left him reeling both mentally & phyically, it also gave him panic attacks & bought on nightmares that he would rather keep dead & buried, made him feel like something was eating his flesh,so he was considerably upset by all of this & in no hurry to repeat the process, & it greatly concerned him that he would lose all sense of himself become hooked on this stuff hence rendering him an addict, & that's all others would see, & morphine is something that binds him up & for some reason until he has used the bathroom that adds to pain that's already so bad, so armed with the knowledge we had that was before us we decided to give the STS a go figureing we had nothing to lose & possibly everything to gain.

Although because of where we live & didn't have the kinds of funds to go see Dr Donald Rhodes, it's not like one can just hop in the car & drive to see the man when you live on the other side of the world, we found that with a perscription from a doctor we were able to get the STS Machine from the company that sells them. Since getting the machine & with nothing but the manual that came with the machine my sigfificant other figured out how to use it, but although he has had some success without knowing which protocols he needs for his feet he feels like a sitting duck as the book doesn't say which protocol is for which area. Now he feels that any benefits he has recieved & any ground he made he now feels that the treatments are at a stand still & the weather being what it is here & without knowing what he needs to be doing, he feels like he is regressing fast. Some days he will wake up in so much pain that the meds don't kick in fast enough, & he is reeling with such intense pain that in that moment he feels he wants to end his life rather than endure one more day in this kind of intolerable pain, yet I have never seen anyone who wanted to live more. He has had RSD/CRPS for almost 9 years now & in that time almost everyone he held dear has abondoned him due to this hidious condition, he feels like a lepar & it makes him feel unwanted & unloved by those whom he thought were his loved ones be it friends or family.

Although he understands that the exact placement of the pads is crucial, & to look at the book that came with the machine it seems that the potocol diragrams themselves seem like they are backwards which at times when pain is intense makes for a fuzzy mind & little patience, gets extremely frustrated, which isn't helping him, for my boyfriend it's more heat than cold that makes his RSD/CRPS a living nightmare.We have spoken to someone who either has been or knew someone who was either a patient or an associate with this Dr Rhodes guy on another site but have been told that unless he is an established patient he can't be helped, but as this person didn't have RSD/CRPS they were unable to help all we wanted was to know if someone could clarify which protocols he needs to try, so that's out of the question. We feel like any door that gets opened is suddenly & brutally shut & no one is willing to help.

We also became aware after getting the machine that anyone saying anything negative about Dr Rhodes or the STS were being targeted by his lawyers & I am assuming threatened with legal action. It seems that there is nowhere that is safe to discuss the pro's & cons of a treatment, so that people can make an informed choice, there was something written on this forum site from a converastion between two women that I would liked to have spoken to one of them being in the massage or reflexogy industry I can't be certain but I think, from memory that was the case, but when I tried to find that particualr conversation I could no longer find it & I had wondered it it was removed for fear of litigation charges, or if these people were no longer members, like any other tpye of treatment one seeks for anything nothing has an iron clad seal of success attached to it, so when we go see a doctor & an operation is required are we each one of us taking a calculated risk the same with medications not all medications work for everyone.

So if anyone out there has had some experience with the machine I am wondering if you could see your way clear into helping a fellow sufferer,I am just trying to help the man I love. I have no wish to get anyone into trouble nor get into hot water myself, which is why I ask if anyone would be willing to help & you would rather not put the information forward on the public forum just send me a private message, if anyone can find their way clear to help it was be more than just appreciated, but If you feel unable to help that's understandable & I certainly hold no ill will, thanks for taking the time to read my letter either way.

Sincerely yours

meekobindi