Guest guest Posted March 17, 2001 Report Share Posted March 17, 2001 Dorothy, I know exactly what you are going through. I had been quite symptomatic for over three years. I was just diagnosed last October and had the decompression surgery in december. I have not had a headache since, the sleep apnea is gone, no muscle or coordination problems, no choking on liquids, etc.. I know that surgery is a scary prospect, especially when it is on your brain but the decompression surgery has a very very high rate of sucess especially with a competent surgeoun. Chip recently did a poll of the group to see how many had sucess with the surgery, 95% were pleased and had relief. I suspect that the actual sucess rate is much higher because most of the people who get better quickly drop out of the group because they do not need the support any longer. The surgery has given me my life back...we truly live in an age of miracles. If you have any specific questions please email me. Don McNeil Tucson, AZ chiari malformation > I am new to the group and was recently diagnosed with cm1. This is all so new and scary to me. I have suffered with several symptoms for since July 1997. I have been treatly for 3 different kinds of headaches. Now I am having swallowing problems, neck pain, memory, sight, back pain, walking and talking problems. I have been on disablity from my job of 22 years for 4 weeks now. The first 3 weeks I felt a lot better, but for the last week all the pain has returned. > I was finally diagnosed 2 1/2 weeks ago after going to several neurologists. I have suffered several mini-strokes and now suffering from hypertension. I am scheduled for cm surgery on 3/23/01. After reading so much over the internet about this disease I am having second thoughts about having the surgery, eventhough I know I can't go on like this anymore. I want my life back. > I met a young lady that had the surgery 2 months ago. She says she hasn't had a headache since surgery. I had prayer for an answer and after that I found my met this lady. > My nsg performed her surgery. > Is there anyone in Texas that I can communicate with by email? I would appreciate it very much. Today was a bad day and need to communicate with someone that knows what I am going through. > > love and many prayers > Dorothy > dharr18@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 There is surgery, I know a family who had the surgery in NY but there was no improvement in autistic symptoms. A while back on yahoo news there was a video of a child (not autistic) who would not sleep, eventually it was discovered he had a chiari malformation. > > Has anyone had experience with this. We want to check my daughter does not have this and are scheduled for an MRI. if she does have this what are the medical options for this, manipulation or surgery. We have done some work in her neck (chiropractic/feldenkrais) and brings speech and intellect gains. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 There is surgery, I know a family who had the surgery in NY but there was no improvement in autistic symptoms. A while back on yahoo news there was a video of a child (not autistic) who would not sleep, eventually it was discovered he had a chiari malformation. > > Has anyone had experience with this. We want to check my daughter does not have this and are scheduled for an MRI. if she does have this what are the medical options for this, manipulation or surgery. We have done some work in her neck (chiropractic/feldenkrais) and brings speech and intellect gains. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 There is surgery, I know a family who had the surgery in NY but there was no improvement in autistic symptoms. A while back on yahoo news there was a video of a child (not autistic) who would not sleep, eventually it was discovered he had a chiari malformation. > > Has anyone had experience with this. We want to check my daughter does not have this and are scheduled for an MRI. if she does have this what are the medical options for this, manipulation or surgery. We have done some work in her neck (chiropractic/feldenkrais) and brings speech and intellect gains. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Here is the video I was thinking of > > > > Has anyone had experience with this. We want to check my daughter does not have this and are scheduled for an MRI. if she does have this what are the medical options for this, manipulation or surgery. We have done some work in her neck (chiropractic/feldenkrais) and brings speech and intellect gains. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Here is the video I was thinking of > > > > Has anyone had experience with this. We want to check my daughter does not have this and are scheduled for an MRI. if she does have this what are the medical options for this, manipulation or surgery. We have done some work in her neck (chiropractic/feldenkrais) and brings speech and intellect gains. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Here is the video I was thinking of > > > > Has anyone had experience with this. We want to check my daughter does not have this and are scheduled for an MRI. if she does have this what are the medical options for this, manipulation or surgery. We have done some work in her neck (chiropractic/feldenkrais) and brings speech and intellect gains. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Hey my name is Joe. If you would please elaborate when you said, I "used" to have fibromyalgia. Is there a biomed protocol that you know of? To: nicolewallaceouaf@...; mb12 valtrex Sent: Fri, December 3, 2010 9:06:50 AMSubject: Re: Chiari Malformation Re: Chiari Malformation Posted by: "W" nicolewallaceouaf@... nicolewallaceouaf Thu Dec 2, 2010 9:54 am (PST) Here is the video I was thinking of That video was amazing. I’m sure lack of sleep plays a big part for some kids. I used to have fibromyalgia until I finally started sleeping and my body could heal. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Hey my name is Joe. If you would please elaborate when you said, I "used" to have fibromyalgia. Is there a biomed protocol that you know of? To: nicolewallaceouaf@...; mb12 valtrex Sent: Fri, December 3, 2010 9:06:50 AMSubject: Re: Chiari Malformation Re: Chiari Malformation Posted by: "W" nicolewallaceouaf@... nicolewallaceouaf Thu Dec 2, 2010 9:54 am (PST) Here is the video I was thinking of That video was amazing. I’m sure lack of sleep plays a big part for some kids. I used to have fibromyalgia until I finally started sleeping and my body could heal. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 I would like to know the answer to this, also.sallyTo: mb12 valtrex Sent: Fri, December 3, 2010 7:42:03 PMSubject: Re: Re: Chiari Malformation Hey my name is Joe. If you would please elaborate when you said, I "used" to have fibromyalgia. Is there a biomed protocol that you know of? To: nicolewallaceouaf@...; mb12 valtrex Sent: Fri, December 3, 2010 9:06:50 AMSubject: Re: Chiari Malformation Re: Chiari Malformation Posted by: "W" nicolewallaceouaf@... nicolewallaceouaf Thu Dec 2, 2010 9:54 am (PST) Here is the video I was thinking of That video was amazing. I’m sure lack of sleep plays a big part for some kids. I used to have fibromyalgia until I finally started sleeping and my body could heal. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 I would like to know the answer to this, also.sallyTo: mb12 valtrex Sent: Fri, December 3, 2010 7:42:03 PMSubject: Re: Re: Chiari Malformation Hey my name is Joe. If you would please elaborate when you said, I "used" to have fibromyalgia. Is there a biomed protocol that you know of? To: nicolewallaceouaf@...; mb12 valtrex Sent: Fri, December 3, 2010 9:06:50 AMSubject: Re: Chiari Malformation Re: Chiari Malformation Posted by: "W" nicolewallaceouaf@... nicolewallaceouaf Thu Dec 2, 2010 9:54 am (PST) Here is the video I was thinking of That video was amazing. I’m sure lack of sleep plays a big part for some kids. I used to have fibromyalgia until I finally started sleeping and my body could heal. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 I would like to know the answer to this, also.sallyTo: mb12 valtrex Sent: Fri, December 3, 2010 7:42:03 PMSubject: Re: Re: Chiari Malformation Hey my name is Joe. If you would please elaborate when you said, I "used" to have fibromyalgia. Is there a biomed protocol that you know of? To: nicolewallaceouaf@...; mb12 valtrex Sent: Fri, December 3, 2010 9:06:50 AMSubject: Re: Chiari Malformation Re: Chiari Malformation Posted by: "W" nicolewallaceouaf@... nicolewallaceouaf Thu Dec 2, 2010 9:54 am (PST) Here is the video I was thinking of That video was amazing. I’m sure lack of sleep plays a big part for some kids. I used to have fibromyalgia until I finally started sleeping and my body could heal. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Some people are using Low Oxalate Diet for fibro. Hey my name is Joe. If you would please elaborate when you said, I " used " to have fibromyalgia. Is there a biomed protocol that you know of? To: nicolewallaceouaf@...; mb12 valtrex Sent: Fri, December 3, 2010 9:06:50 AMSubject: Re: Chiari Malformation Re: Chiari Malformation Posted by: " W " nicolewallaceouaf@... nicolewallaceouaf Thu Dec 2, 2010 9:54 am (PST) Here is the video I was thinking of That video was amazing. I’m sure lack of sleep plays a big part for some kids. I used to have fibromyalgia until I finally started sleeping and my body could heal. Marcia -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 Joe,I used to have fibromyalgia too. When I started getting adequate sleep, my own body fixed the problem.Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 Joe,I used to have fibromyalgia too. When I started getting adequate sleep, my own body fixed the problem.Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 Ok thanks. To: martinezjoe1978@...; mb12 valtrex Sent: Sat, December 4, 2010 9:54:06 AMSubject: Re: Chiari Malformation Joe, I used to have fibromyalgia too. When I started getting adequate sleep, my own body fixed the problem. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 Ok thanks. To: martinezjoe1978@...; mb12 valtrex Sent: Sat, December 4, 2010 9:54:06 AMSubject: Re: Chiari Malformation Joe, I used to have fibromyalgia too. When I started getting adequate sleep, my own body fixed the problem. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 Ok thanks. To: martinezjoe1978@...; mb12 valtrex Sent: Sat, December 4, 2010 9:54:06 AMSubject: Re: Chiari Malformation Joe, I used to have fibromyalgia too. When I started getting adequate sleep, my own body fixed the problem. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2010 Report Share Posted December 7, 2010 I no longer have fibromyalgia. My recovery came from long term antibiotics. These have been prescribed for chronic lyme disease. I cannot say that lyme caused fibro, but I can say that long term zithromax or clarithromycin has eliminated it. > > Hey my name is Joe. If you would please elaborate when you said, I " used " to > have fibromyalgia. Is there a biomed protocol that you know of? > > > > > > ________________________________ > > To: nicolewallaceouaf@...; mb12 valtrex > Sent: Fri, December 3, 2010 9:06:50 AM > Subject: Re: Chiari Malformation > >  > Re: Chiari Malformation > Posted by: " W " nicolewallaceouaf@...  nicolewallaceouaf > Thu Dec 2, 2010 9:54 am (PST) > > Here is the video I was thinking of > > >  > That video was amazing. I’m sure lack of sleep plays a big part for some kids. > I used to have fibromyalgia until I finally started sleeping and my body could > heal. > Marcia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2010 Report Share Posted December 7, 2010 I no longer have fibromyalgia. My recovery came from long term antibiotics. These have been prescribed for chronic lyme disease. I cannot say that lyme caused fibro, but I can say that long term zithromax or clarithromycin has eliminated it. > > Hey my name is Joe. If you would please elaborate when you said, I " used " to > have fibromyalgia. Is there a biomed protocol that you know of? > > > > > > ________________________________ > > To: nicolewallaceouaf@...; mb12 valtrex > Sent: Fri, December 3, 2010 9:06:50 AM > Subject: Re: Chiari Malformation > >  > Re: Chiari Malformation > Posted by: " W " nicolewallaceouaf@...  nicolewallaceouaf > Thu Dec 2, 2010 9:54 am (PST) > > Here is the video I was thinking of > > >  > That video was amazing. I’m sure lack of sleep plays a big part for some kids. > I used to have fibromyalgia until I finally started sleeping and my body could > heal. > Marcia > Quote Link to comment Share on other sites More sharing options...
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