Cranial Osteopathy

[JulieS]

Hi, I am new here. I was diagnosed with POTS in Oct. and have responded poorly to all medications they have tried. Florinef, Midodrine, beta blockers, Paxil, Prozac. All these medications made me feel much worse.

So, my cardiologist wants my to try cranial osteopathy. He said this is actually where he has seen the most success with his POTS patients. His daughter actually recovered from POTs with the cranial osteopathy. Has anyone ever heard of this?

thanks

Julie

[MightyMouse]

Julie, I'll only take one guess that you and I have the same local cardiologist. (Dr. Goodkin, yes?)

He suggested the same thing to me. I decided not to get it done as I'd had quite a bit of cranial sacral therapy. Felt nice, but don't think it helped me much. Certainly there is no risk in doing so. Can't hurt. You just need to know going into it that there's no supportive research on POTS and cranial osteopathy.

Nina

[pamyla]

I also went for one session of cranial sacral therapy. It did feel good - I left the office feeling so relaxed! So much so that I went home and slept for a few hours. (That was unusual to me because usually I'm an insomniac and I've never been able to take naps) I found it too expensive to be able to continue long term, and didn't notice much else from the first session.

If you decide to try it, keep us posted

Pam

[ethansmom]

I have been wanting to try this for a long time- does anyone have more infomation? I live in the DC area but have no idea where to start looking for someone who could do this.

[Jackie]

Can the experienced people explain more what this is? TIA

[pamyla]

Jessica - the lady I saw is located in Arlington, VA. She's great! Cranial-sacral is not her main thing, but I'm sure she could give you a referral.

Dr. Marie Schum-Brady

(703) 527-5384

3500 14th St N

Arlington, VA

I think I paid $50-60 for a session.

And here's an article on what CST is all about -

http://www.consciouschoice.com/health/cran...sacral1406.html

[Jackie]

Pamyla - thanks for the link for more info.

It sounds interesting. I have also briefly considered acupuncture (but afraid of needles) and thought acupresure might be a good alternative.

If anyboody has tried these I'd be interested to hear of any benefits.

Geez what I just wouldn't give for a full body massage done by a professional massage therapist....but bills too high and money too tight since not working full time anymore, being off work for months, and even with insurance multiply 10 ER visits x 75.00 co-pays and 2 hospitalizations x 500.00 co-pay and you begin to see...but oh boy someday...just for the relaxation and body aches alone I think it would be wonderful!

[Jackie]

Also, if anybody knows how to find a doctor around where I live that does this that would be great (near Toledo, Ohio) (that is the cranial sacral therapy). What type of doctor are they considered? Wouldn't even know where to begin looking. Not like a chiropractor right? Don't want anything cracked or manipulated!

[JulieS]

Nina,

Yes, it is Dr. Goodkin that I see. I actually just had my first visit with him on Feb. 10. But he seems wonderful. Did he do anything that helped you?

Jackie

The dr. told me the cranial osteopathy is a form of manipulation ( but different that what a chiropracter would do.) Some people with POTS have brain stem compression into the spine.(or something like that), and if this is the case the cranial osteopathy would help to "fix this." I am hoping it helps me. I will keep you posted. I have been having a lot of neck pain, especially on days that I have to do alot to take care of my kids. Then my neck hurts so bad for a few days and I sometimes feel like I can't hold my head up. The dr. I'm going to see is a D.O.

Like Nina said, this is not a proven treatment for POTs, but none of the other treatments have helped me so far. Florinef, Midodrine, and SSRIs have made me worse.. So, I'm very hopeful that this will help me.

Julie

[MightyMouse]

Hi Julie. I really like Dr. Goodkin, mostly because he's pretty humble about what he knows/doesn't know. He's always willing to try something new if it's shown some promise in studies or reports. I think the best help he gave me was in the area of sleep. I need to stay on my sleep schedule or you can guarantee that I'll get sick and symptomatic. I mostly use Dr. G for my local management of POTS/NCS--but he's great about being willing to call other specialists who've worked longer with POTS/NCS folks if he needs help.

Nina

[Louby]

oooooh the therapy sounds wonderful... what i would do to feel relaxed and have a good nights sleep.

another item to mention, i am going to be in my doctors office for hours next time!

[Timbo]

Jessica,

What city in the DC area do you live in? I am from Gaithersburg, MD

Tim

[michiganjan]

I just looked up cranial osteopathy on the internet. It seems to be limited to the manipulation of the slight movement of the cranial bones. The impression that I have is that Cranial Sacral Therapy is an offspring of cranial osteopathy and uses the same principles only applied to the whole body as opposed to just the head. Please, someone, correct me if I have this wrong.

I have chronic fatigue, hyperadregenic POTS, and exercise intolerance, as well as some form of Nephretic Diabetes Insipidus, Multiple Chemical Sensitivities, asthma and other allergies, and extreme heat sensitivity. I have had these problems since I suffered through a long and vicious unexplained viral illness 25 years ago. I have still not given up getting better. And I have tried various therapies, including Cranial Sacral Therapy and Acupuncture.

MY EXPERIENCE WITH CRANIAL SACREAL THERAPY

I have been doing cranial sacral therapy for a few months now. The practicioner was trained at the Upledger Institure (search for Upledger to learn more) and she is a licensed physical therapist who comes to my house once a week for treatment sessions. She pumps up her Upledger air mattress and I lie on it on the floor. She sits on the floor beside me and works on my body. I am fully clothed for the sessions. It is a kind of lying on of hands. She always starts out by holding my head and she "asks" my body where she needs to work that day. Then when she has her answer, she asks me what my ideas are about where she needs to work. It is rare that we have different answers, but that has happened. The treatments are gentle and relaxing.

HOW IT HAS BENEFITED ME

So far, the cranial sacral work has helped my posture and helped me release pent-up feelings.

HOWEVER, I have not seen any improvement in my exercise intolerance or POTS. Because there are still some areas that need work, I am going to continue treatments until we get through all the areas.

MY EXPERIENCE WITH ACUPUNCTURE

I have been having acupuncture sessions at least weekly (twice a week at first) for more than a year. My practicioner is a Chinese Dr. and 7th generation acupuncurist--she started working with the needles at age 5.

HOW IT HAS BENEFITED ME

It has helped with depression, anxiety, irritible bowel and acid reflux. I also have two fibroids and an ovarian cyst that were growing, and I asked her to stop them. She has worked on them and they did not continue to grow when viewed by ultrasound 6 mo later and yet I have continued to take the HRT that was most likely pushing them. I have also had "cupping" for colds and that seemed to have the effect of stopping the cold quickly. Cupping is where they heat the air inside glass cups and stick them to your neck and back by the suction that is created.

HOWEVER The acpuncture has not helped my POTS or exercise intolerance. It has not helped my constipation. Everytime I am there she asks "Do you have constipation?"

I am going to continue as she has recently changed the points where she is using the needles. After trying to explain POTS to her for a year, she finally came in one day with a Chinese-English medical dicitonary and said, show me what it is. I couldn't find most terms pertaining to POTS but I did find the word, "Dysautononia" and pointed it out. She read the Chinese definition and now has been puting needles right down the sides of my spine to work on "nerves."

MY EXPERIENCE WITH NEUROMODULATION TECHNIQUE

I have also been doing yet another alternative therapy this past winter called neuromodulation technique for allergy elimination. (To learn more search for neuromodulation technique and Dr. Leslie Feinberg.) I go to an alternative clinic and see a licensed RN. She uses muscle testing to ask my body questions, then runs this sort of vibrating thingy with two bumps on it down my spine three times while I breathe in, out, and then in and out quickly.

HOW IT HAS BENEFITED ME

I haven't been doing this one too long, so don't know yet, however the muscle testing indicates that my allergies and asthma, chemical sensitivities, and extreme reaction to the sun have all been fixed. I am still on my allergy meds and there is no sun right now. So don't know. I did, however, navigate the perfume aisle in a dept. store on a busy Saturday where they were spraying passers by and was not bothered, which is unusual.

MY EXPERIENCE WITH EXERCISE

I have been exercising regulary for at least 2 years. A year ago I started doing 2 cardio sessions a day for five days of the week. I managed to ride my bike in the mornings and walk at least a mile in the evenings and also go to the gym 3 times a week to work weight machines.

HOW IT HAS BENEFITED ME

I have muscles you can actually feel (and see) in my arms. I can walk a bit longer before the gawd-awful symptoms set in.

HOWEVER it has not really improved my stamina or exercise intolerance or POTS. In fact, I am slowing the exercise program down a bit because the last year that I have stuck religiously to this schedule, I can't manage any other activity on the same day such as going to the grocery or fixing my dinner. I am just too **** symptomatic from doing all that exercise. And if I shop too long, I can still get severe symptoms that take 2 days in bed to recover.

Please post your own experiences with these therapies.

Michigan Jan

[hilfgirl33]

Okay, I see Dr. Goodkin and I see/saw the man he recommends for cranial osteopathy. Has he helped me - yes I believe so. I don't know how or why, but I know when it's been a while since I've seen him my symptoms are worse (like now and I haven't seen him since November). There was one time when I had been really dizzy for like two days and I went in to see him and was worked on and I wasn't dizzy when I left. That is the only time I've had results that I saw immediately.

He has also helped with neck and back pain.

The thing is, he is so darn expensive and my insurance doesn't cover it, so when things are tight, unless I'm really not feeling well, I usually don't go. But I'm needing an appt.

Hope this helps. I would definitely give it a try if you can swing it.

[Jackie]

Wow, I am interested in this cranial therapy thing and also have been considering doing acupunture (though afraid of the needles so thought maybe acupressure might be an alternative). The thing, finding somebody around here that does the cranial sacral therapy will probably be a challenge though I've located a person who does chinese medicine and she is the wife of my GYN/ONC who I highly respect. The drawback to all of these alternative treatments of course for me is the money too. Since I got sick we are really struggling financially, but I am going to keep these things in mind for a future time so I really appreciate people posting the information. It is very helpful to hear about your experiences.

[hilfgirl33]

Jackie - from what I understand, craniosacral therapy is just the tip of the iceberg in comparison to cranial osteopathy. Craniosacral therapy can be performed by massage therapists who have undergone special training. Cranial osteopathy is actually only performed by D.O.'s, who have undergone more training. I don't know, craniosacral therapy may help as well, but I just wanted to let you know what I have done is cranial osteopathy.

[Jackie]

hilfgirl33 - Can you please explain what they do in cranial osteopathy then? I'm sorry if I missed it in the posts on this subject...I'm getting confused!

[hilfgirl33]

Jackie- I'll do my best to explain what he has explained to me and what happens. I am by no means an expert but the way he explained it to me was that there are pulses all throughout the body beyond the hr pulse. He works on the body as a whole to get everything back in motion and rhythm, so things flow the way they should - you get better blood flow and motion throughout the body so things don't hurt, function the way they should, then your body is able to fight disease and work at its best capacity.

For example, my tailbone used to bother me tons and he gently applies pressure, it doesn't hurt, to get it back into correct alignment... My tailbone rarely bothers me now. But the bigger picture according to the D.O. is that if the tailbone was injured and out of alignment, it is like some weight pulling down on my spinal cord all day long and could affect my neck motion and even blood flow to the brain.

He says these things over years can cause real illness, and I do believe the basic philosophy of the body being in optimal working condition. Another example, he said he could help me with my endometriosis and pelvic adhesions I have from prior c-sections (which cause me a great deal of pain). He works at restoring motion in the pelvis. I didn't think he could actually help with adhesions but he says that if things are moving and flowing properly, the body could actually flush some of this away... I know it sounds crazy.

I just wanted to say after all this POTS stuff happened I became way more paranoid about everything , and I was really nervous to go here but I did because I wanted to get better. Well, I'm not better 100%, but I have noticed improvement and maybe that's all I can get but I'll take it.

He has also helped with chronic neck pain (I would often feel like my head weight 10,000 pounds and was too hard for my neck to carry around). I really don't have that feeling much anymore.

Anyway, I'd be happy to answer any more questions.

By the way, he has never hurt me, it's very relaxing actually and not manipulation, more like gentle pressure.

Hope this helps. I may google this and see if I can post a link for you.

Elaine

[Gemma]

Hi everyone. I know this is an old post but i was just recently referred to see Dr. Bellew. Dr. Goodkin says he helped some patients. I want to try him, but he is really expensive so I wanted advice if it is worth the money. Also, does anyone know if any ostheopatic doctors accept insurances or all of them just take cash. I live in philla area and found other ostheopatic doctors, but not sure if any of them accept insurance. Thanks.

[Patti]

I have been getting cranial sacral therapy for several years now. Not for POTS, but for other health issues.

I took me 3 treatments before I really started to notice the change in my overall health. I no longer require chiropractic care (used to go 2 x per month for over 20 years) and I find that my immune system is much healthier. Better sleep, more energy - overall I would recommend this treatment :)