CST: To Brion

[Guest guest]

Dear Brion,

I am sharing your very well worded response with our fellow EDSer's on the

CEDA (Canadian Ehlers-Danlos Association) and the EDS Today group, as they

have some list members in common with ours as well as some who aren't.

Those folks will greatly appreciate your information and experiences with

CST, and you might consider joining those EDS lists if you aren't already a

member. I am highly blessed and consider myself very privileged to know

these people, some of whom God has allowed me to meet face to face. They are

an awesome support group, and a lifesaver for me. One, in fact, has become

truly my " sister of choice " (she and I both lost our sisters several years

ago, and ironically, her sister was named like me...her name is Lana).

She even flew to TX from Omaha last May for my wedding (at the Botanic

Gardens in Ft. Worth). Another, my dear Sue, was in serious condition

(VEDS), having been careflown from NY to s Hopkins last Oct. She called

me scared and in need of moral support and some drs' names and phone #'s. I

was all too happy to have an opportunity to return just a small portion of

Sue's kindnesses to me and other EDSer's. Lana and I wound up flying to JHH

in Baltimore to visit Sue while she was hospitalized there to lend love and

moral support. Sue wound up blessing me and Lana far more than we blessed

her, I am sure.

Dr. Grubb, Cardiac Electrophysiologist at the Medical College of OH in

Toledo, Dr. Lee Ann Pearse, Pediatric Cardiologist at Medical City in

Dallas, and Dr. Rowe of s Hopkins Hospital in Baltimore all

recommend a Dr. Fryer, cardiologist, (also at Medical City in Dallas.

Dr. Fryer is a cardiologist trained in CST, and my son, and I have

visited with him. I see Dr. Dan Heffez (as does another EDSer CEDA list

member whom Dr. Heffez recently did cervical fusion on with good

success--she also has POTS like me and my sons), Neurosurgeon, in Chicago,

for my c-spine issues (many, and complicated...have had one extensive

cervical fusion and now am facing an upcoming laminectomy). I will run CST

by Dr. Heffez before going ahead with it for myself. For my son (18),

we can go ahead. Thus far, he manifests so spinal stenosis. Dr. Grubb,

Dr. Pearse, and Dr. Sperry (pediatric neurologist at Medical City, Dallas)

and Dr. Rowe are all very acquainted with EDS and its many attendant

medical problems, including Dysautonomia. 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?, but it is my

understanding that CST requires multiple sessions within a period of a few

weeks/months order to achieve optimum benefits. 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.

Your friend who went to Baylor University who was trained in CST...Baylor is

in Dallas. My ortho practices there. Great hospital, great medical

school...one on the best I've ever been in, and that is really saying

something! I'm a native northeast Texan. All my life (I'm 43), anytime

a person was said to be " in Baylor " ...we just knew that poor person was bad

sick....Baylor is where they send folks round here for really serious

problems. In fact, when Lana and I were in Baltimore at JHH visiting Sue in

Oct., that just happened to be when my son, , had his dramatic and

attention-getting horrific episode (clonic tonic seizure & convulsive

syncope)....the high school RN called me on my cell phone to tell me and ask

what I wanted done till I could fly home. I said, " Three words,

Lou....CAREFLIGHT TO BAYLOR! "

How I'd dearly love (honestly) to be able to go to Six Flags and ride the

Texas Giant, Judge Roy Scream, The Shockwave, The Mine Train, etc. once

again! I LOVED riding roller coasters, and was so sad when the old wooden

Comet was finally torn down at Fair Park in Dallas several years back! I

rode that thing every Oct. as many times as I could when we went to " the

Great State Fair of Texas " ....as Big Tex would drawl. It's the small

things like that which I miss most. And silly as it sounds, I miss being

able to stand on my head! I was darned good at it, and could reach that

position from a completely supine start without bending my knees! Ahhh,

well, there are still plenty of things for me to enjoy and plenty of people

for me to love.

Love,

~LoneStarRose~

(~~)

[edsaware] Craniosacral articles and links for cranio sacral

> therapy information

>

>

> Yesterday, and I both saw our Dallas Cardiologist. Upon

> interrogating 's Medtronic Reveal Plus Loop Recorder, it was

> discovered that last Friday (the second day in a row he felt horrible and

> wasn't able to go to school) he experienced no less that 4 SVT's

> (ventricular tachycardia--more serious than his previous " events "

> recorded)) which occurred within a 45 minute timeframe. His heart

> actually stopped or " paused " for about 20 seconds, then accelerated to

> >175-180 bpm. There was one similar recorded event on the recorder on

> Saturday. Needless to say, this got the dr's attention, as well as the

> Medtronic representative's. Dr. Pearse put a call in to Dr. Grubb, who we

> will be seeing in about 3 weeks, and hopefully, she will hear something

> back from him quickly. If not, I'll give him the disc the Medtronic

> representative gave me with the downloaded interrogation information.

> Also, Dr. Pearse called Dr. Rowe at s Hopkins (who is not

> currently seeing patients, but doing research only) about 's

> scenario. Dr. Grubb has mentioned Dr. Rowe's name to me a number of

> times, and I do also know and have read at least one article which Dr.

> Rowe has had published establishing a link between Ehlers-Danlos Syndrome

> and various forms of Dysautonomia (Neurocardiogenic Syncope, POTS, etc.)

> Dr. Rowe discussed with her (Dr. Pearse) that his research indicates

> conclusively that CranioSacral Therapy, which used to be considered a

> rather " alternative form of treatment, mostly done by osteopathic drs "

> (this is no longer the case) does help some patients with various forms of

> dysautonomia. It is not meant to replace other forms of medical or

> diagnostic treatment, but to go along with it. He gave her the names of

> two Cardiac Electrophysiologists in the Dallas area (Dr. Fryer at

> Medical City, and Dr. Levine at Presbyterian Hospital) who are very

> familiar both with Ehlers-Danlos Syndrome as well as dysautonomia, and are

> trained in CanioSacral Therapy. Dr. Pearse sent us immediately upstairs

> to visit with Dr. Fryer, who both gave me a wonderful handout (I'll

> happily mail a photocopy--it's several pages long--to anyone who wants to

> send me their mailing address by private email) and visited with

> and me at length. Dr. Fryer also told me that CranioSacral Therapy is

> very gentle, very non-invasive, and there have been documented cases of it

> relieving the generalized muskoskeletal pain which many EDSer's (including

> me) suffer from. I described to him Dr. Heffez's findings that my spinal

> column is congenitally significantly narrowed (an EDS thing) from about

> c-3 to t-1, which is definitely a contributing factor to my POTS and

> syncope. I further explained to him fully about my spinal cord

> impingement and spinal stenosis at those locations, and my need for a

> laminectomy with posterior incision (to " web " with my 1999 cervical fusion

> with anterior incision to better stabilize my c-spine). Dr. Fryer said

> that while CranioSacral Therapy is not a " miracle cure " and does not work

> for every patient, it certainly does no harm which has been documented

> thus far, and just might help alleviate some of my discomfort with my

> c-spine as well. I'm willing to give it a try and so is . Will

> keep you posted as to any result, good or bad. Anyone else familiar with

> this?

> http://jeffreyburch.com/home/jb1/multilist/36/0

> ~LoneStarRose~

> (~~)

>

>

> The views and opinions expressed in this email are those of the author.

> Always consult your physician before trying any treatment, therapy, or

> exercise program.

>

>

>