Craniosacral articles and links for cranio sacral therapy information

[Guest guest]

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~

(~~)

[Guest guest]

,

Craniosacral therapy is non-invasive and very gentle. Dad uses CST and

other modalities when working on me. I first heard of CST at the EDNF

conference in Walnut Creek a few years ago. Meg Harmon and her CST

Practitioner, Maude Nerman gave a lecture on CST at the conference. I hope

I got those two names right. At the time, I thought it was pure nonsense.

However, since then I have changed my mind because I know it has worked for

me.

I find it fascinating that Dr. Rowe is interested in CST as it isn't

typically accepted by Western medicine. This is wonderful! I also suffered

from POTS, CFS, and EDS as a teen. The CFS ended years ago, but the POTS

and EDS are still present. The POTS has been significantly reduced in

recent months and I suspect that the thyroid medication has elevated my

blood pressure up to normal, which has reduced the occurrence of fainting

and dizziness. I wonder if the CST treatment played any role in it as well.

Impossible to know for certain, but it is interesting.

Dad can talk to you more about CST when he gets home later this week, if you

are interested.

-Barb

[Guest guest]

Sis, I think Mike Uggen might know something about this.? That's terrible about

! Be sure to keep us posted!