:-/ A good friend of mine is a MT and also does Accupuncture. He practices Cranio Sacral Therapy and offered to do it on me. I did not accept but instead asked for more information. He did some research and ended up coming back to me telling me that after better understanding what Chiari is he will not touch my with Crainal Sacral.
Hi Ray. As you know I emailed a few therapist about this.
Here's the latest answer I got.
Thanks for your email. I have heard of Chiari 1 Malformation and it's seriousness. I'm very sorry but I feel I would not be able to treat your son. Chiari Malformation is a high alert for cranio-sacral and anything that concerns a change in inter cranial pressure can be a contra-indication. I just feel that as I haven't treated this condition before I would not feel comfortable undertaking to treat your son.
I am truly sorry I cannot help you, I can't even begin to imagine what your son or you are going through in dealing with this uncommon condition.
Please let me know if you have any other questions,
Hi Selma, I was unsure, Jackie did some research but most web-sites warn that it is not suitable for people with intra-cranial fluid problems, was unsure if this applied to us with CM....
I am doing OK, sleeping quiet a bit lately but I guess that beats being awake all the time lol, How are you, how are the wedding plans going?
Thanks Jackie, I guess that rules this form of treatment out. It seems that awareness is not just about knowing what treatments are good but the ones that can harm us as well.
Rod, I will say my oldest son sees the MT mentioned above. He gets very bad migrane (migraine) headaches. Meds don't touch the HAs but with this type of massage [if you see it done it doesn't really appear to be massage at all] his HA is gone within about 15 mins of starting the procedure.
I've asked why it is dangerous for Chiari. He didn't really know but he had called the instructor that taught him and was told not to touch me with this type of treatment. He has no problem doing a normal massage with or without accupuncture but that just seems to make my shoulder worse not better.
Hi CW, looking at at how this massage is done you would wonder how it could hurt as it looks quiet gentle. I however will go with the advice of your friend and the advice Jackie got from the ppl she contacted. It is good that it works for your son, I hope it continues to help.
The Doctors I have encountered since I was DX dont inspire confidence, I wish to avoid surgery for as long as possible but I do not wish to make thing worse either :)
Hi Selma, I am glad you are OK, I hope you are not overdoing things with the wedding, I appreciate your DD lives and works miles from home so you are tasked with organizing some aspects of the big day but take your own good advice and "listen to your body".....rest and dont over do things :)
hey guys. I just wanted to say I have been treated in cst and it made me feel horrible. I would throw up several times after each session and I just felt bad. So I ended up stopping it. In my own opinion I would not recomed this to chiarians.
Just wanted to say..thanks for posting this question!!
I have been thinking about whether this treatment would be ok for me or not, looks like I got my answer!! No one in Canada seems to know anything regarding Chiari so I was nervous that if I asked they would say it was ok..just b/c they didn't really know about it.
Selma- I agree with Ray..I hope you are feeling well, take care of yourself.
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