_{Cranial Sacral Therapy}

I've heard and read conflicting things about CST, so I wondered if anyone has tried it. I initially heard that someone w/ IIH should never try it because it's a manipulation of spinal fluid flow. Then I was told that it wouldn't work for me because the practice is based on a closed system, but mine is open because of the lumbar shunt. Most recently, I had a practioner that travels the world to teach this technique tell me that she has helped many people w/ IIH and Chiari Malformation. I would really love some feedback.

Here's information on Cranial Sacral Therapy from Massage Therapy 101 , if you aren't familiar w/ the practice:

"Cranio-Sacral Therapy, or CST, is a gentle, hands-on manipulation of a physiological body system called the cranio-sacral system. This system is comprised of the soft tissue and bones of the cranium (or head), the spine and the pelvis. Massage therapists that perform cranio-sacral therapy also target the membranes and cerebrospinal fluids that surround and cushion the brain and spinal cord from injury during a therapy session."

"Cranio-sacral therapy is practiced by a plethora of health professionals most commonly physical therapists, massage therapists and chiropractors - who employ a touch equivalent to the weight of a nickel. As a result of this tender technique, many clients claim that they can fall asleep during their CST sessions.

The theory behind cranio-sacral therapy is that when blockages occur in spinal fluid, an unharmonious balance in the body can occur, resulting in muscle and joint strain, emotional disturbances and the improper operation of the bodys organs and central nervous system. Practitioners believe that until the spinal fluid is naturally allowed to move freely around the body, the central nervous system and the bodys other major organs and muscles will be put off balance and put at risk of sickness and injury.

During your cranio-sacral therapy session, you will lie facing upwards on a massage table. You can opt to be fully-clothed or you can wear a gown. The massage therapist will lightly manipulate various areas of your body including your bones, skull, spine, pelvis and soft tissues to clear any blockages of cerebrospinal fluid to allow the fluid to flow more smoothly and naturally.

A cranio-sacral therapy session typically lasts, at minimum, 20 minutes, but a session can last up to an hour, depending on the seriousness of your condition. CST has been known to aid various health problems such as migraine headaches, sinus disorders and immune deficiencies. CST has also been used as a preventative therapy in cases where a clients immune system is very low.

Minor health ailments such as chronic headaches can typically be treated with a few CST sessions. However more serious health conditions that cause severe pain or chronic disease should be conducted over a series of weekly CST sessions."

I had my first CST session yesterday and have sessions scheduled for Wednesday and Friday as well. I will post to let everyone know how it goes. I did notice a few interesting things during the session, one - my headache seemed to move from the back/base of my head to the top (it also lessened slightly) and the other was a significant reduction of tinnitus by the end of the session. Will keep you all updated as I continue.

Thank you for keeping us up to date Betsy, it sounds like a very interesting form of treatment and great if your looking for homeopathic treatment.

If anyone is considering doing this treatment don't forget to talk to your doctor or Neurologist about it before going ahead to make sure you are viable for it.

:flower:

My doctor and I had discussed this a while ago and this was the first time everything fell into place to be able to try it. Tinnitus level is still down this morning.

Last year when I was in shunt failure I went to a CST. For me it was miserable! I spent almost 2 weeks in pain - if you could picture having more pain then IH! It was so painful and only worsened things fr me. I went a second time but had the same results. I believe in trying everything to help with the pain - however this did not work for me. I hope you have better results. I do get acupuncture for pain now - it does help a bit. It makes me feel better than any meds can. I am on my second shunt that "no longer works for me". Frustrating. Keep your chin up and best of luck!

Betsy, as I have learned, sometimes we have to take a leap of faith and give it a try. I am keeping my fingers crossed!
Mel, glad to hear that acupuncture is helping

Guess we are all guinea pigs in a way!

Betsy I'm glad the Tinnitus is still low and CST is working for you,
Mel I'm sorry to hear your second shunt is not working I hope you get some relief soon and a new form of treatment.

Please keep us up to date the two of you xxx :flower:

I'm so glad someone has tried it and found some relief! I think integrative therapies are such a blessing. They're like any intervention though, they seem to affect everyone differently. I really appreciate the feedback and look forward to more updates!

Sorry I haven't updated for a while, got laid low by a respiratory virus. I'm doing CST twice a week now and the major difference I've noticed has been the decrease in tinnitus volume. It is the lowest it's been in several years, I hadn't realized how stressful that constant sound had been for me until it lessened. I started to notice fewer balance issues as well, which would make sense if yourelieve pressure on the inner ear.
At the end of May I am going outof town for 10 days and it will be interesting to see what happens during that time. I will try to post each week and at least once while I am in Chicago.

Betsy, I'm so glad to hear you're feeling better & IIH symptoms have improved with CST. I would appreciate any info you're willing to share. If you'd like to keep a record, you might try the Members Journal..it'a locked section, so access restricted to members. I hope you continue to find relief..thanks so much for sharing!

Take care,
Julie

I had a bad day on Friday, wacky weather and work was crazy, my head hurt terribly. When I went to my CST appt taht afternoon, one of the first things she asked was if the headache was worse on the right side of my head (it was) becasue she could feel the difference from how it was earlier in the week. I got some relief and laid low for the weekend. I'm feeling better tonight. At Tuesdays appt with my regular doctor we found another issue that is possibly negatively impacting the IH, my oxygen levels are low. She isn't sure if it is because of sleep apnea or something else, but it means more tests. Fortunateley they can wait until I get back from my trip to Chicago and they are none invasive, as well. Hope everyone is having good days

At least the CST seems to be helping..that's encouraging! Enjoy Chicago & hopefully they'll be able to sort it all out when you get home.

I'm back, I didn't actually fall off the face of the earth, it just felt that way! Chicago was wonderful, I saw amazing things, met fantastic people and learned a lot. IIH was under control for most of the trip and the feww problems I had were minor. Thankfully the CST is nelping enough to keep me sane for now. It is doing great reducing the tinitus, I only have a day or two a week that it bothers me. My therapist has taught me some things I can do myself to help the tinnitus and headaches, which has lessened one stress in my life. Shortly after coming back from Chicago I began having housing problems, which led to a couple weeks of camping in a friend's livingroom. I have been in my new place for two weeks now, but I'm still "camping" because my stuff is still in storage( I have an airmatress, a folding chair and some thrift shop dishes). Next week I should be able to get a crew to move my storage stuff into my place.

Knowing that I will have the CST once a week has helped me keep it all together, or at leasting faking it well. ;)

Hi Betsy! Thanks for the update! It's really awesome to hear that CST is help you. I haven't heard of a lot of others in the IIH community who have tried it, so I'm following your experience. Sorry to hear about the housing stuff, but hopefully it all gets worked out soon ... sounds like you have a good attitude about it. *hugs* Keep on keepin' on, sweetie!!

Cranio Sacral Therapy uses light touch to enhance the function of the craniosacral system, which is comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord. To learn more and to find a therapist click on the links below.


Craniosacral Therapy Association of the United Kingdom

The Irish Association of Cranialsacral Therapists

Biodynamic Craniosacral Therapy Association of North America

Cranialsacral Therapy Association of Australia

Hi All, new to the group.

Craniosacral has been a huge part of pain management for me. I do not have a shunt, but I get one every-other week. It tends to give me about 3 to 4 days of no light sensitivity, increased flexibility, reduced tinnitus, and a regained sense of "normal-ness". (Which is a misnomer because my IIH is more normal that "normal" at this point.) If I could afford it I would do it every week.

I get a LP every 4 weeks, on months that I skip my Craniosacral my opening pressure averages about 3 to 4 points higher. 

So while this may not be the best route for everyone, I could not live without mine.

Thank you so much for sharing your experience! Alternative (Integrated) Therapies are becoming more readily accepted and available, so I hope more members are able to experiment and find some relief! I encourage you all to ask questions and look for practitioners in your area. I have found that most of these people are very kind, gentle souls that just want to help, so tend to be very open to payment plans, discounts, trading goods/services, etc. They also have to make a living, but I've never been turned away if really suffering and needed a treatment..that includes massage, reiki, and acupuncture. I've always been a little afraid of CST because I'm not sure how it would affect an open system (w/ a shunt), but keeping it in my back pocket as an option if one of the others stop helping.

I'm so glad it's helping!!!

my son has IIH and does not have a shunt.  he is 7 years old and has autism.  he gets cranial osteopathy every 2 weeks.  before we started, his sensory disorders were so bad that his aggressive responses to them were about to get him expelled from school.  with the osteopathy, he stopped getting citations or even "yellow" slips.  he said to me "is this how other people feel all the time, the way Dr. ____ makes me feel?"  which made me want to cry to think he realizes that he never feels normal.  his energy is so much better with the treatments.  recently he started developing a tic, and guess what, it's worse when he lays down!  and his head hurts when he does that.  it was so bad on Monday that I thought he had opsoclonus which is bad news.  but after the osteopathy treatment, it's nearly gone.  

the thought process is that adjusting the cranial bones can allow better cerebrospinal fluid flow.  with my son, it takes about 24 hours after a treatment, for his ICP to come down and for him to feel better.  I'm assuming that's what happens.  they think they don't know what's causing autism.  I do.

cranio sacral therapy is sort of like a less skilled form of cranial osteopathy.  a massage therapist can learn to do it.  but cranial osteopathy is done by D.O. doctors.  you can find one in your area at cranialacademy.org.  it doesn't seem to work for me, but for a child with more malleable skull bones, my son, it seems to work wonders.  I would recommend anyone try it.  my mother has all the same stuff (without knowing that's what it is because she refuses to get an LP) and she is absolutely dependent on her osteopath.

I do not have a shunt and received cranial sacral therapy- it was a mind blowing experience! During the session I had nausea, my ringing in my ear got louder, and I broke out in a sweat. Then All the sudden the pressure began to dissipate. I was so exhausted afterwards I could hardly walk.. Even after the session I continued to improve. My pressure went away by over 80% the first session alone and my peripheral vision returned. I go once a week and have very little pressure at all. My doctor is weaning me off meds and all is well so far! I did see another therapist and did not have the same result. You must go to someone who is well qualified!! My therapist is a chiropractor, Jin shin jitshu instructor, cranial sacral therapist among other things. Not all practitioners are created equal. I could go less often but she helps me with my rheumatoid arthritis as well. I do not know if it is safe if you have a shunt but you should definitely look into it! It changed my life.

I'm so glad to hear people are having positive results! I'm always in favor of natural approaches before medication, if you can afford it or insurance allows. I've still been too chicken to try this one, but I'm so sensitive I usually get what I need from reiki or acupuncture. Of course, I have a VP shunt that seems to be working, so that also helps ;)