So I just spent a week in the hospital due to my left arm and leg loosing strength, vomiting everything I eat, massive headache, muscle spasm on my neck and back, and so disbalanced I kept falling, all this all at once. I still left the hospital feeling the same way I went in.
They have tried so many different meds but my body rejects them, so I am starting Cranial sacral therapy to ease off the pressure to head and neck.
I don’t know how effective this physical therapy is or if it will even work but I’m willing to try. Is there anyone who knows about this?
Shaylee,
Cranial Sacral is great. It's very gentle and you can feel the muscles in your face, neck and head relaxing. You can even feel the pressure drain out of your head some. They do this thing where they gently pull your ears and it's amazing. The first time I had it done I was so happy. It just pulls the tension and pain out of your head. The most important thing is choosing a good/experienced person to do it. Hopefully a Physical Therapist. My experiences with alternative therapy is that it is only as good as the person who does it. Too many times I gave myself over to someone that pushed me too much or did something too agressively and it would take me weeks to recover from a flair. So I would research and ask questions. It shouldn't hurt. I also don't want to over sell it either. The effects are not perminant and you need to keep going. It will help some and hopefully make you a little more comfortable. I hope it works out for you.
Wendy
Thank you so much ladies. I have been seeing a neurologist and she has been giving me medication after medicationand I would get crazy side effects. I decided to refuse any medication till she send Me for an MRI. She said it would come out clean but they found the chiari. Since then she’s only treated my symptoms but everything has failed and I just get worst. I finally got what I need to get seen at A special hospital that just deals with chiari and syringomyelia. There I’ll be able to get help from a NS and chiari specialist.
Hopefully that way we can deal with the issue,.not the symptoms.
Thank you so much for the advise on the therapy. It means so much to get to talk and get adviseadvise from people who know what I’m talking about and can really guide me the right way.
Shaylee,
I had Cranial Scaral therapy, before I was diagnosed with CM and it about killed me. Most PT's won't do them. Usually a massage therapist or Chiropractor preforms them. Does your NS know about this? They try to manually manipulate your spine and they believe the fused plates of your skull can be "adjusted" by "moving" them. As an adult our skull is fully fused. I was in bed for a week praying to die. Please talk to your NS before you have this done. It is also very dangerous for CM patients to see a Chiropractor. The people preforming Cranial Sacral manipulation aren't trained well or a Chiari specialist or a physiologist. It is so easy for them to hurt you & they don't know they are. I was told by my NS Cranial Sacral therapy can kill a Chiarian.
Shaylee,
I can only speak from my experiences with Cranial Scaral. I had it done dozens of times over the years before my surgery and after and before my diagnosis and after.
The first was done at a rehab hospital by a Physical Therapist and I saw her maybe 15 times over the course of a year. She was extremely gentle and backed off if anything felt uncomfortable. It helped with some of my face head and neck pain. I don't remeber if it helped my headaches or not.
The second person I saw was also a Pysical Therapist he also was trained by an Ostopath and did some other treatments along with the Cranial Sacral. I swiched to him because the doctor at the rehab hospital didn't want to treat me anymore. David helped me alot. He was close to my house and he became indespensable to me before I was diagnosed. I had no meds and he helped lessen the effects of my headaches. I would show up at his house with a towel over my head because I was in so much pain and by the time I left I could get in the car without the towel. I saw him for about 2 years once a week. I had some dental issues and having the dental work done sent me into a downward spiral and I was finally diagnosed and decompressed. I did see him a little bit after my surgery but not much.
The third person was also a Physical Therapist that I found about 5 years ago. My sypmtoms had steadily gotten worse and she came highly recommended. She combined CS with Zero Balancing and it has been the thing that has helped me the most out of anything I have done other than surgery. She is a highly regarded therapist. I saw her aprox.every other week for 3+ years. I still see her occasionally but I can't afford her right now because she doesn't take insurence. And since I found out that my CSF is blocked from scar tissue from my original surgery I have been concentrating on the things I need to do to get ready for surgery.
Tracy is exremely knowledgeable about everything to do with Chiari. I would definitely listen to her words of caution and advice. I can only speak to my experiences. I had very qualified people work on me but this is very important delicate areas when you have Chiari. Anything can throw stuff off and flair you up when you have Chiari so you have to be extremely careful. I have been messed up by so many well intentioned body workers in my desperation to find relief over the 16 years I have been dealing with this. Everything I tried prior to my surgery felt like a temporary fix that just held me over till the next time I saw someone, usually the next week. The only thing that made my symptoms better for any length of time was surgery and medication even with that I am still suffering and disabled.
As with anything like Tracey said you should speak to your doctor before you do it and when your having any type of work done you need to be able to speak up and stop it if it doesn't feel right or it makes you uncomfortable. Good Luck!
Wendy
Wendy,
I am glad it helped you. I was trying anything I could try. It took over 4 years to dx my CM. I had a very advanced case and maybe that is why It made me so sick. They never did anything to my face, just forehead. I totally agree with your thought of never having it done without the NS's approval.
Shaylee,
Have you tried Acupuncture or Clinical Hypnosis for pain mgmt? The Dr. that did my hypnosis was in a Rehab ctr.
The first was done at a rehab hospital by a Physical Therapist and I saw her maybe 15 times over the course of a year. She was extremely gentle and backed off if anything felt uncomfortable. It helped with some of my face head and neck pain. I don't remeber if it helped my headaches or not.
The second person I saw was also a Pysical Therapist he also was trained by an Ostopath and did some other treatments along with the Cranial Sacral. I swiched to him because the doctor at the rehab hospital didn't want to treat me anymore. David helped me alot. He was close to my house and he became indespensable to me before I was diagnosed. I had no meds and he helped lessen the effects of my headaches. I would show up at his house with a towel over my head because I was in so much pain and by the time I left I could get in the car without the towel. I saw him for about 2 years once a week. I had some dental issues and having the dental work done sent me into a downward spiral and I was finally diagnosed and decompressed. I did see him a little bit after my surgery but not much.
The third person was also a Physical Therapist that I found about 5 years ago. My sypmtoms had steadily gotten worse and she came highly recommended. She combined CS with Zero Balancing and it has been the thing that has helped me the most out of anything I have done other than surgery. She is a highly regarded therapist. I saw her aprox.every other week for 3+ years. I still see her occasionally but I can't afford her right now because she doesn't take insurence. And since I found out that my CSF is blocked from scar tissue from my original surgery I have been concentrating on the things I need to do to get ready for surgery.
Tracy is exremely knowledgeable about everything to do with Chiari. I would definitely listen to her words of caution and advice. I can only speak to my experiences. I had very qualified people work on me but this is very important delicate areas when you have Chiari. Anything can throw stuff off and flair you up when you have Chiari so you have to be extremely careful. I have been messed up by so many well intentioned body workers in my desperation to find relief over the 16 years I have been dealing with this. Everything I tried prior to my surgery felt like a temporary fix that just held me over till the next time I saw someone, usually the next week. The only thing that made my symptoms better for any length of time was surgery and medication even with that I am still suffering and disabled.
As with anything like Tracey said you should speak to your doctor before you do it and when your having any type of work done you need to be able to speak up and stop it if it doesn't feel right or it makes you uncomfortable. Good Luck!
Wendy
Thank you ladies. I’ll take your advises to heart. I’ve learned so much about this condition in the last few Weeks here than the months I’ve spent with my neurologist.
I have yet to talk to a NS. I’m actually suppose to get the paperwork I need to go to the specialty hospital today in the mail.
I’ve been suffering from the symptoms for years but just recently got diagnosed with Chiari.
My neurologist is NOT very helpful. I find myself telling her about treatments and medications.
Tracy,
I am so grateful that you wrote your post and added the words of wisdom and caution. I would never want someone to suffer from something I recommended. The thought brings tears to my eyes. It took me 4+ years to get diagnosed also and I went to so many people in my desperate quest to find out what was wrong with me and so many of them made me worse. I would never want that to happen to anyone. Thank You.
Wendy
TracyZ said:
Wendy,
I am glad it helped you. I was trying anything I could try. It took over 4 years to dx my CM. I had a very advanced case and maybe that is why It made me so sick. They never did anything to my face, just forehead. I totally agree with your thought of never having it done without the NS's approval.
Shaylee,
Have you tried Acupuncture or Clinical Hypnosis for pain mgmt? The Dr. that did my hypnosis was in a Rehab ctr.
The first was done at a rehab hospital by a Physical Therapist and I saw her maybe 15 times over the course of a year. She was extremely gentle and backed off if anything felt uncomfortable. It helped with some of my face head and neck pain. I don't remeber if it helped my headaches or not.
The second person I saw was also a Pysical Therapist he also was trained by an Ostopath and did some other treatments along with the Cranial Sacral. I swiched to him because the doctor at the rehab hospital didn't want to treat me anymore. David helped me alot. He was close to my house and he became indespensable to me before I was diagnosed. I had no meds and he helped lessen the effects of my headaches. I would show up at his house with a towel over my head because I was in so much pain and by the time I left I could get in the car without the towel. I saw him for about 2 years once a week. I had some dental issues and having the dental work done sent me into a downward spiral and I was finally diagnosed and decompressed. I did see him a little bit after my surgery but not much.
The third person was also a Physical Therapist that I found about 5 years ago. My sypmtoms had steadily gotten worse and she came highly recommended. She combined CS with Zero Balancing and it has been the thing that has helped me the most out of anything I have done other than surgery. She is a highly regarded therapist. I saw her aprox.every other week for 3+ years. I still see her occasionally but I can't afford her right now because she doesn't take insurence. And since I found out that my CSF is blocked from scar tissue from my original surgery I have been concentrating on the things I need to do to get ready for surgery.
Tracy is exremely knowledgeable about everything to do with Chiari. I would definitely listen to her words of caution and advice. I can only speak to my experiences. I had very qualified people work on me but this is very important delicate areas when you have Chiari. Anything can throw stuff off and flair you up when you have Chiari so you have to be extremely careful. I have been messed up by so many well intentioned body workers in my desperation to find relief over the 16 years I have been dealing with this. Everything I tried prior to my surgery felt like a temporary fix that just held me over till the next time I saw someone, usually the next week. The only thing that made my symptoms better for any length of time was surgery and medication even with that I am still suffering and disabled.
As with anything like Tracey said you should speak to your doctor before you do it and when your having any type of work done you need to be able to speak up and stop it if it doesn't feel right or it makes you uncomfortable. Good Luck!
Wendy