Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Dear Mike, You are truly a God send to our list. I thank you so very much for taking the time to reply to me, and to give me such truly valuable information on CST. I am really learning a lot, and I always welcome that. Dr. Fryer is actually the cardio we were sent to visit with about doing CST, and he is the one who said that sometimes multiple sessions are needed. How can I know what level of CST training he has? My EDS III (Hypermobility) is NOT mild. I also have Classical EDS, and some vascular components which include autonomic nervous system dysfunctions. My skin biopsy ruled out VEDS, thank God. I did tell Dr. Fryer, though, very carefully and in great detail about my spinal stenosis with spinal cord impingement (and at what vertebrae), my prior c-spine fusion, my POTS, my severe IBS, etc. He and his physician's asst. listened with great interest. Dr. Grubb (MCO, Toledo, OH--my Electrophysiologist) is also familiar with Dr. Fryer, and seemed ok with him doing CST on us from a Dysautonomia standpoint. I will take the matter up with Dr. Grubb in more detail when I see him next week, though, and will also seek the opinion of Dr. Clair Francomano at the NIA/NIH (who is doing the study on EDS and other connective tissue disorders which I am participating in). It was Brion who had the headache relieved by CST, not me. I do periodically have migraines, though. You are more than welcome to visit us here in Sulphur Springs anytime! We'd love to have you, and greatly look forward to meeting you! I've heard so many good things about you from my Sis, Lana (on the CEDA list). There is a very nice RV park very near my home, too. Love and many thanks, ~LoneStarRose~ (~~) Re: CST: To Brion/ > I have comments to make on several points raised in these emails. > > (1) " it is my understanding that CST requires multiple sessions > within a period of a few weeks/months order to achieve optimum > benefits. " > > This is categorically NOT true. It depends entirely on what is > involved. Yes, in some cases it will take weeks or months. But what > I have been told is that it is very common for someone to get 90 > percent of the total benefit of it in just one session. It also > depends on what aspect of CST is being done. If hard palate, inside > the mouth work is being done, the general recommendation is for at > least one, and preferably two, one-hour full body sessions to be > done first. But a blanket statement that weeks or months is required > for optimal results in all cases simply is not true. Look at > Brion's example of results in one 30 minute session. > > (2) " Because the unique problems that EDS patients have with their > spines, I would be careful about who you go to for Craniosacral > therapy. Maybe you could get a referral from a specialist who knows > you? I have seen some massage therapists advertise that they do > Craniosacral therapy, but personally I will only go to someone with > an MD/DO training just to be safe. There is a DO in Madison that > advertises that she does Craniosacral therapy- D.O. means " Doctor > of Osteopathy. " Not to knock massage therapists, they are a > wonderful resource. " > > Please, please, please read the post that I wrote yesterday on CST. > Being an MD or DO DOES NOT BY ITSELF IN ANYWAY qualify someone to > adequately do CST! Training in CST does NOT involve just taking one > course or class in it. There are several " levels " of training. You > need to know what level the individual has had. I have assisted > several people on the list in finding practitioners and I can > absolutely assure you that I have in many instances found LMT's or > PT's in an area who were far and away, hands-down, better qualified > than any doctor or DO on the list in that area. > > (3) " I had a constant headache in a very localized, precise area on > the right upper side of my head for two years, that started after a > roller coaster ride on the Texas Giant, a wooden roller coaster in > Dallas that whipped my head from side to side for several minutes " > > Without knowing the EXACT location of the headache, I can think of > at least two or three very probable causes that could easily be > addressed by CST. One would be a " jamming " of the right Parietal > and Temporal bone suture. A second could be a jamming of the right > Parietal along the Frontal suture. And, there are a number of > possible " lesions " involving the Sphenoid bone. The first two would > usually be " fixed " in one session as part of the basic " ten-step " > procedure that is taught in level one. If the Sphenoid bone was the > culprit, depending on the type of " lesion, " I would say either level > one or level two. If it affected the hard palate as well, then I > would be looking for someone at a level three, even though level two > gets training in doing it. > > > (4) " Mike, another EDSer and father of Barb, yet another EDSer and > both list members of our several EDS lists is a trained massage > therapist who has special training in CST. He says that he has had > good results with using CST in some EDSer's. I'd simply love to > have Mike work on me and both my sons (both of them are EDSer's, > too....we have Classical and Hypermobility Types, with some vascular > components), but he is in Seattle, I think. I'm not opposed to > traveling there (I fly everyplace else for medical help, so why not > there, too? Since I'm in Sulphur Springs, TX, flying to Seattle > for weekly sessions is a bit of a stretch for my pain tolerance and > motherly duties.....especially during the school year. " > > A couple of comments. I did a quick check for Sulphur Springs and > only found one CST listing and that was for level one. I can't tell > enough about the individual from the listing to be comfortable > recommending them. There are, however, over 2000 practitioners > listed for Texas with varying levels of training. But, you are not > that far from Dallas and there are at least 3-4 I would be more than > comfortable recommending. One is Dr. Fryer. Another is > Sally Fryer, who is a PT. Of the two, Sally Fryer actually has a > better CST/bodywork background than Fryer. I would suspect > that the going " rates " might be less with a PT than a full MD. > > For mild type III EDS, I would have no qualms recommending a level > one practitioner, although I would prefer at least a level two. My > own training is through level two. My hesitation is NOT because of > concern of causing injury. My hesitation is whether they know enough > to be able to do any good. I would have far greater concerns about > someone seeing a " fully qualified " PT or DO who didn't understand > EDS than I ever would about someone with EDS seeing someone with > just the basic training in CST, if all that was being done was CST. > Once again, CST is an extremely gentle, non-invasive modality. A > perfect example of what I mean by this is that, even though I highly > recommended to Cindy that she try a couple of sessions of CST on > Dylan, I did not do them myself. I have absolutely no fear or > concern that I was going to hurt him or in any way make anything > worse. My basis was that I felt he should be seen by someone with a > higher skill level than mine to be able to get the most out of it. > But the main reason I didn't was time. I can (and did) find her a > very highly trained CST practitioner fairly close by. I felt our > time could be more profitably spent by concentrating on > those " things " that I do that she can't find locally and then > helping her find someone there for the other stuff, even if I did > feel comfortable doing the " other stuff " myself. > > And that leads right in to your comment about " I'd simply love to > have Mike work on me and both my sons. " If you called me and said > you wanted to come out and have me do CST on you or your sons - I > would tell you right up front that you could do far better right > there in your area. You have practitioners fairly close by who are > far more qualifed in CST than I am. On the other hand, if you > wanted someone who could do the CST, balance it out with lymphatic > drainage, add whatever Myofascial Release work was necessary, and > then throw in some acupressure, polarity and directed energy to > round it all out ... That's a different matter. My " strength " isn't > in being a " specialist " in any particular modality. My " strength " > is in having a working level competency in an unusually broad range > of modalities that allows me blend them and integrate them in a > single session as necessary without having to resort to three or > four specialists to get the job done. > > And to wind this one up - I keep saying " Be careful what you ask > for. " If I can figure out how to operate all the systems on our RV > in the next few weeks (now that we finally have it back from the > accident), I intend to start laying out some trip plans for the > year. We are tentatively looking at about three weeks on the road in > March to run down through the southwest (specifically to Oklahoma so > my wife can see where her family comes from) and then another three > weeks in April to go through the Dakotas to visit where I came > from. Then, sometime after the middle of June, we are looking at a > much longer trip. It could run anywhere from 30 to 90 days on the > road. On the short end, it would be back to the mid-west (Wisconsin, > Michigan and Indiana). On the long end, itt could be full cross > country and back, with zig-zagging detours along the way, depending > on how many replies I got to a Post that simply said " Anybody want > me to stop by? " > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Dear Mike, You are truly a God send to our list. I thank you so very much for taking the time to reply to me, and to give me such truly valuable information on CST. I am really learning a lot, and I always welcome that. Dr. Fryer is actually the cardio we were sent to visit with about doing CST, and he is the one who said that sometimes multiple sessions are needed. How can I know what level of CST training he has? My EDS III (Hypermobility) is NOT mild. I also have Classical EDS, and some vascular components which include autonomic nervous system dysfunctions. My skin biopsy ruled out VEDS, thank God. I did tell Dr. Fryer, though, very carefully and in great detail about my spinal stenosis with spinal cord impingement (and at what vertebrae), my prior c-spine fusion, my POTS, my severe IBS, etc. He and his physician's asst. listened with great interest. Dr. Grubb (MCO, Toledo, OH--my Electrophysiologist) is also familiar with Dr. Fryer, and seemed ok with him doing CST on us from a Dysautonomia standpoint. I will take the matter up with Dr. Grubb in more detail when I see him next week, though, and will also seek the opinion of Dr. Clair Francomano at the NIA/NIH (who is doing the study on EDS and other connective tissue disorders which I am participating in). It was Brion who had the headache relieved by CST, not me. I do periodically have migraines, though. You are more than welcome to visit us here in Sulphur Springs anytime! We'd love to have you, and greatly look forward to meeting you! I've heard so many good things about you from my Sis, Lana (on the CEDA list). There is a very nice RV park very near my home, too. Love and many thanks, ~LoneStarRose~ (~~) Re: CST: To Brion/ > I have comments to make on several points raised in these emails. > > (1) " it is my understanding that CST requires multiple sessions > within a period of a few weeks/months order to achieve optimum > benefits. " > > This is categorically NOT true. It depends entirely on what is > involved. Yes, in some cases it will take weeks or months. But what > I have been told is that it is very common for someone to get 90 > percent of the total benefit of it in just one session. It also > depends on what aspect of CST is being done. If hard palate, inside > the mouth work is being done, the general recommendation is for at > least one, and preferably two, one-hour full body sessions to be > done first. But a blanket statement that weeks or months is required > for optimal results in all cases simply is not true. Look at > Brion's example of results in one 30 minute session. > > (2) " Because the unique problems that EDS patients have with their > spines, I would be careful about who you go to for Craniosacral > therapy. Maybe you could get a referral from a specialist who knows > you? I have seen some massage therapists advertise that they do > Craniosacral therapy, but personally I will only go to someone with > an MD/DO training just to be safe. There is a DO in Madison that > advertises that she does Craniosacral therapy- D.O. means " Doctor > of Osteopathy. " Not to knock massage therapists, they are a > wonderful resource. " > > Please, please, please read the post that I wrote yesterday on CST. > Being an MD or DO DOES NOT BY ITSELF IN ANYWAY qualify someone to > adequately do CST! Training in CST does NOT involve just taking one > course or class in it. There are several " levels " of training. You > need to know what level the individual has had. I have assisted > several people on the list in finding practitioners and I can > absolutely assure you that I have in many instances found LMT's or > PT's in an area who were far and away, hands-down, better qualified > than any doctor or DO on the list in that area. > > (3) " I had a constant headache in a very localized, precise area on > the right upper side of my head for two years, that started after a > roller coaster ride on the Texas Giant, a wooden roller coaster in > Dallas that whipped my head from side to side for several minutes " > > Without knowing the EXACT location of the headache, I can think of > at least two or three very probable causes that could easily be > addressed by CST. One would be a " jamming " of the right Parietal > and Temporal bone suture. A second could be a jamming of the right > Parietal along the Frontal suture. And, there are a number of > possible " lesions " involving the Sphenoid bone. The first two would > usually be " fixed " in one session as part of the basic " ten-step " > procedure that is taught in level one. If the Sphenoid bone was the > culprit, depending on the type of " lesion, " I would say either level > one or level two. If it affected the hard palate as well, then I > would be looking for someone at a level three, even though level two > gets training in doing it. > > > (4) " Mike, another EDSer and father of Barb, yet another EDSer and > both list members of our several EDS lists is a trained massage > therapist who has special training in CST. He says that he has had > good results with using CST in some EDSer's. I'd simply love to > have Mike work on me and both my sons (both of them are EDSer's, > too....we have Classical and Hypermobility Types, with some vascular > components), but he is in Seattle, I think. I'm not opposed to > traveling there (I fly everyplace else for medical help, so why not > there, too? Since I'm in Sulphur Springs, TX, flying to Seattle > for weekly sessions is a bit of a stretch for my pain tolerance and > motherly duties.....especially during the school year. " > > A couple of comments. I did a quick check for Sulphur Springs and > only found one CST listing and that was for level one. I can't tell > enough about the individual from the listing to be comfortable > recommending them. There are, however, over 2000 practitioners > listed for Texas with varying levels of training. But, you are not > that far from Dallas and there are at least 3-4 I would be more than > comfortable recommending. One is Dr. Fryer. Another is > Sally Fryer, who is a PT. Of the two, Sally Fryer actually has a > better CST/bodywork background than Fryer. I would suspect > that the going " rates " might be less with a PT than a full MD. > > For mild type III EDS, I would have no qualms recommending a level > one practitioner, although I would prefer at least a level two. My > own training is through level two. My hesitation is NOT because of > concern of causing injury. My hesitation is whether they know enough > to be able to do any good. I would have far greater concerns about > someone seeing a " fully qualified " PT or DO who didn't understand > EDS than I ever would about someone with EDS seeing someone with > just the basic training in CST, if all that was being done was CST. > Once again, CST is an extremely gentle, non-invasive modality. A > perfect example of what I mean by this is that, even though I highly > recommended to Cindy that she try a couple of sessions of CST on > Dylan, I did not do them myself. I have absolutely no fear or > concern that I was going to hurt him or in any way make anything > worse. My basis was that I felt he should be seen by someone with a > higher skill level than mine to be able to get the most out of it. > But the main reason I didn't was time. I can (and did) find her a > very highly trained CST practitioner fairly close by. I felt our > time could be more profitably spent by concentrating on > those " things " that I do that she can't find locally and then > helping her find someone there for the other stuff, even if I did > feel comfortable doing the " other stuff " myself. > > And that leads right in to your comment about " I'd simply love to > have Mike work on me and both my sons. " If you called me and said > you wanted to come out and have me do CST on you or your sons - I > would tell you right up front that you could do far better right > there in your area. You have practitioners fairly close by who are > far more qualifed in CST than I am. On the other hand, if you > wanted someone who could do the CST, balance it out with lymphatic > drainage, add whatever Myofascial Release work was necessary, and > then throw in some acupressure, polarity and directed energy to > round it all out ... That's a different matter. My " strength " isn't > in being a " specialist " in any particular modality. My " strength " > is in having a working level competency in an unusually broad range > of modalities that allows me blend them and integrate them in a > single session as necessary without having to resort to three or > four specialists to get the job done. > > And to wind this one up - I keep saying " Be careful what you ask > for. " If I can figure out how to operate all the systems on our RV > in the next few weeks (now that we finally have it back from the > accident), I intend to start laying out some trip plans for the > year. We are tentatively looking at about three weeks on the road in > March to run down through the southwest (specifically to Oklahoma so > my wife can see where her family comes from) and then another three > weeks in April to go through the Dakotas to visit where I came > from. Then, sometime after the middle of June, we are looking at a > much longer trip. It could run anywhere from 30 to 90 days on the > road. On the short end, it would be back to the mid-west (Wisconsin, > Michigan and Indiana). On the long end, itt could be full cross > country and back, with zig-zagging detours along the way, depending > on how many replies I got to a Post that simply said " Anybody want > me to stop by? " > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > > Quote Link to comment Share on other sites More sharing options...
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