Chiari 1 Malformation, Mitochondrial diseases (podcast)
The first edition of the Headache and Migraine News podcast. Learn more about Chiari 1 Malformation, or read more about the different types of Chiari Malformation at the Mayo Clinic. If you missed it, be sure to catch the post Fight Migraine: Be nice to your Mitochondria.
(If for some reason you can’t see the podcast above, you can download the mp3 here.)
12 February 2009 @ 2:40 am
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
23 February 2009 @ 4:45 pm
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!
16 August 2011 @ 7:56 pm
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.
13 June 2018 @ 11:53 am
I have syringomyelia, but no chiari malformation, but I still get the cape area pain and migraines starting at the base of my skull. One of my syrinx is located right there though, so I am not sure if that is the cause, or if anyone with syringomyelia can experience those migraines even without chiari malformation. It’s very hard to find Dr’s who have any knowledge of this condition. I get an annual MRI to see if the syrinx have grown and then meet with my neurologist and neurosurgeon. They want to avoid surgery as long as possible because it is risky, not a cure and has a lot of complications (shunts move etc), so they are waiting until the syrinx are too large or my symptoms are unbearable. I’m worried that by that time it will be too late though, and life will be miserable, since symptoms can’t be reversed. It’s a complicated tightrope.