Comments on: Chiari 1 Malformation, Mitochondrial diseases (podcast) http://headacheandmigrainenews.com/chiari-1-malformation-mitochondrial-diseases-podcast/ Thoughts and information about the latest news in the world of migraine, cluster headache and other headache treatment around the world. Mon, 06 Feb 2012 17:36:29 +0000 hourly 1 http://wordpress.org/?v=3.1.3 By: Tiffany Reed http://headacheandmigrainenews.com/chiari-1-malformation-mitochondrial-diseases-podcast/comment-page-1/#comment-124066 Tiffany Reed Wed, 17 Aug 2011 01:56:15 +0000 http://headacheandmigrainenews.com/?p=863#comment-124066 Thank you for sharing this my baby was diagnosed at 18 months with aquired chiari 1 and now at 27 months was diagnosed with mitochondrial disease. Thank you for sharing this my baby was diagnosed at 18 months with aquired chiari 1 and now at 27 months was diagnosed with mitochondrial disease.

]]> By: James http://headacheandmigrainenews.com/chiari-1-malformation-mitochondrial-diseases-podcast/comment-page-1/#comment-3747 James Mon, 23 Feb 2009 22:45:27 +0000 http://headacheandmigrainenews.com/?p=863#comment-3747 Thanks Beth! I'm looking forward to the next podcast. :) Well, the bad news is that an MRI is really the way to go to confirm the diagnosis. And I would think this is something that you'd really like to know - especially since there are so many indications for you. Give it some thought! Thanks Beth! I’m looking forward to the next podcast. :)

Well, the bad news is that an MRI is really the way to go to confirm the diagnosis. And I would think this is something that you’d really like to know – especially since there are so many indications for you. Give it some thought!

]]> By: Beth http://headacheandmigrainenews.com/chiari-1-malformation-mitochondrial-diseases-podcast/comment-page-1/#comment-3342 Beth Thu, 12 Feb 2009 08:40:29 +0000 http://headacheandmigrainenews.com/?p=863#comment-3342 James, I loved your podcast and personally think its a great addition to the website! Thank you. When I first started getting migraines 14 years ago, I was diagnosed with Syringomyelia, which can be a symptom of Chiari malformation, but there was no mention of a Chiari malformation. Is this a relatively new diagnosis or should the neurosurgeon have seen the malformation if it was present. My syrinx is "small" and is located in my cervical spine, but at the time, the neurosurgeon assured me that it was NOT the reason for my migraines. Again, by the time they discovered the syrinx, this was about 12 years ago. The feeling of extreme pressure that you described in the back of the head is exactly what I feel, as if it were "congested like my sinuses". I tried to explain this to my primary care doctor many years ago, and he said, since there are no sinuses back there, it was most likely muscular, ordered a series of X-rays, and prescribed muscle relaxers. I really notice this extreme pressure when I get up from sitting down. I just really appreciate the information you provide through this website and wish you migraine free days as well. Based on this new study, I would definitely like to make a follow up appointment with a neurosurgeon who is familiar with this particular study, as I don't have any insurance and MRI's are extremely expensive. However, if there is a chance that this cyst in my spinal cord is the cause of my misery for the past 14 years, I will do whatever it takes to get it taken care of. It is frustrating that at the time of my original appointment and MRI's, I was so young and otherwise healthy, weighed 75 pounds less than I do now, my quality of life was polar opposite of what it is now and I had excellent insurance coverage which could have taken care of the problem. I am not complaining or bitter, (ok, maybe a little) but I am hoping , armed with this "new" information, I could be close to finding a possible "cure" to my migraine disease. Thank you again, James, I will keep you posted. Beth, Orlando, FL James, I loved your podcast and personally think its a great addition to the website! Thank you.
When I first started getting migraines 14 years ago, I was diagnosed with Syringomyelia, which can be a symptom of Chiari malformation, but there was no mention of a Chiari malformation. Is this a relatively new diagnosis or should the neurosurgeon have seen the malformation if it was present. My syrinx is “small” and is located in my cervical spine, but at the time, the neurosurgeon assured me that it was NOT the reason for my migraines. Again, by the time they discovered the syrinx, this was about 12 years ago. The feeling of extreme pressure that you described in the back of the head is exactly what I feel, as if it were “congested like my sinuses”. I tried to explain this to my primary care doctor many years ago, and he said, since there are no sinuses back there, it was most likely muscular, ordered a series of X-rays, and prescribed muscle relaxers. I really notice this extreme pressure when I get up from sitting down. I just really appreciate the information you provide through this website and wish you migraine free days as well.
Based on this new study, I would definitely like to make a follow up appointment with a neurosurgeon who is familiar with this particular study, as I don’t have any insurance and MRI’s are extremely expensive. However, if there is a chance that this cyst in my spinal cord is the cause of my misery for the past 14 years, I will do whatever it takes to get it taken care of. It is frustrating that at the time of my original appointment and MRI’s, I was so young and otherwise healthy, weighed 75 pounds less than I do now, my quality of life was polar opposite of what it is now and I had excellent insurance coverage which could have taken care of the problem. I am not complaining or bitter, (ok, maybe a little) but I am hoping , armed with this “new” information, I could be close to finding a possible “cure” to my migraine disease.
Thank you again, James, I will keep you posted.
Beth, Orlando, FL

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