Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
I've been "sick" (as much as I hate to use that word) for the last 12 years. There's been one diagnosis after another, but they've all eventually been disproven and I'm just left with a host of debilitating symptoms that can't be explained. All of my specialists are agreement that there's definitely something physically wrong that's causing all of my symptoms, but they just haven't been able to pinpoint what: neurological lyme disease, lupus, multiple sclerosis, fibromyalgia, sjogren syndrome, marfan syndrome, hemochromatosis, epilepsy, gillian-barre, connective tissue disorder...I could go on and on, as I'm sure many of you can as well.
A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation. I began researching Chiari and it's THE most perfect fit of all the diagnoses that I've had over the years! Looking back, it makes a lot of sense. I literally can't remember a day that I haven't woken up without a headache...and I'm in my early 30's. My mom -- who still has my pediatrician notes from the 1980s! -- sees that I was diagnosed with migraines at age 4. The headaches became debilitating following a concussion from a surfing accident 12 years ago...that's also when all of the other whacky symptoms began emerging. Over the last 12 years, symptoms have increasingly interfered with my life to the point that I've had to go on medical leave every other semester. I just completed by 6th year of what was supposed to have been a 3 year graduate program. Life is NOT how I'd ever imagined it would be. This recent MRI and learning of Chiari has given me great hope, but then I began to read about the controversy surrounding cases of minimal tonsillar herniation.
I don't have the time or money (and honestly, not the emotional strength) to go through another series of specialists that don't know what to do with me. So I'm writing for help. I've done tons of research (if only Chiari research could be a part of my graduate thesis, I'd be set!) and can find great Chiari neurosurgeons...BUT aside from a handful of comments here and there, I have trouble determining which surgeons "believe in" borderline Chiari cases like mine. Would anyone with similar experiences or knowledge about a specific surgeon's practices PLEASE post or message me with suggestions? Ideally, I'd like to find someone in the northeast (MA, NY, PA, NJ, DE, MD, DC, VA -- even NC would be okay). Would be appreciative for recommendations and warnings (i.e. don't waste your time with Dr. X because he won't even look at you unless your herniation is significant).
Thank you all in advance :)
A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation. I began researching Chiari and it's THE most perfect fit of all the diagnoses that I've had over the years! Looking back, it makes a lot of sense. I literally can't remember a day that I haven't woken up without a headache...and I'm in my early 30's. My mom -- who still has my pediatrician notes from the 1980s! -- sees that I was diagnosed with migraines at age 4. The headaches became debilitating following a concussion from a surfing accident 12 years ago...that's also when all of the other whacky symptoms began emerging. Over the last 12 years, symptoms have increasingly interfered with my life to the point that I've had to go on medical leave every other semester. I just completed by 6th year of what was supposed to have been a 3 year graduate program. Life is NOT how I'd ever imagined it would be. This recent MRI and learning of Chiari has given me great hope, but then I began to read about the controversy surrounding cases of minimal tonsillar herniation.
I don't have the time or money (and honestly, not the emotional strength) to go through another series of specialists that don't know what to do with me. So I'm writing for help. I've done tons of research (if only Chiari research could be a part of my graduate thesis, I'd be set!) and can find great Chiari neurosurgeons...BUT aside from a handful of comments here and there, I have trouble determining which surgeons "believe in" borderline Chiari cases like mine. Would anyone with similar experiences or knowledge about a specific surgeon's practices PLEASE post or message me with suggestions? Ideally, I'd like to find someone in the northeast (MA, NY, PA, NJ, DE, MD, DC, VA -- even NC would be okay). Would be appreciative for recommendations and warnings (i.e. don't waste your time with Dr. X because he won't even look at you unless your herniation is significant).
Thank you all in advance :)
Is anyone familiar with him?
I will see what he says at tomorrows appt and update my posts.
I did not believe him, I knew deep down this was the problem, because I had tried everything over the past 10 years to get rid of the headaches and they just got worse. When I was finally informed about chiari, all the symptoms I had made sense.
So I continued to look for a neurosurgeon that specialized in chiari. I found Dr,. Dan Heffez in Wisconsin. I filled out his forms and sent a copy of my scans up to him. within a week or two I received a call saying that he did believe it was chiari causing my problems and that he would like to schedule an appointment.
I was very happy that FINALLY I found a dr that would listen and believe me! So I made an appointment, flew up there in July of last year from Arizona. I met with him and a neurologist. They both believed it was Chiari, but before we went forward with surgery they asked me to try a occipital nerve block. When I did that and it didn't work, Dr. Heffez agreed to do the surgery.
I flew back up there January of this year for the decompression surgery. It has been 6 weeks since the surgery and I feel great! I have not had a headache yet! And I was having them everyday, and having to visit the hospital at least once a month for migraines. I also got more feeling back into my hand and foot.
I was afraid of the surgery but it was very simple. It is an inpatient surgery and you are there for about 4 days, but it was nothing like I expected. Of course the first day wasn't fun. There is some pain and you are drugged up, but after that I can't really say I was in major pain from the surgery. Yes the incision hurt and the muscles were stiff and sore, but I was not on any major pain killers, just a Tylenol/codine a couple times a day.
I would highly recommend looking into Dr. Heffez. He doesn't believe in the chiari having to be a certain size or any fluid blockage. If you have chiari there is always the chance that it is pinching on the spinal cord no matter the size.
Good luck, if you have questions feel free to ask
That said....
I am in the same boat as you. Went through 7 neurologist and 6 other docs in 4 years before I was finally officially diagnosed. My herniation is also borderline. Only 3mm. Vie also been at this about a decade. What Im finding is docs are now starting to believe that there is zero correlation between herniation and that "magic invisible line on the MRI" and symptoms. they are discovering (with much of the research coming out of the CHIARI INSTITUTE) that it has more to do with CSI flow and pressure than actual herniation numbers. I wish you lots of luck in your endeavors. Keep us posted on your choices!
MaineTuffChic