Since I love to ramble, I'm going to try to make this as short and sweet as possible! I had an MRI which revealed a hernia of the brain (and edema). The tech wrote, in his notes, that the size of the hernia suggested a Chiari I Malformation.
Went to my family physician and got no answers from him. He didn't seem concerned, but he also didn't seem to know anything about it.
I know some of you on here are doctors, and while I'm not looking for a diagnosis, I would really like some insight. I can give you more information if it's needed - I've got the printout from the MRI tech.
I'm really hesitant to see a neurosurgeon. I'm being told it's not a big deal, and I don't want to spend $$$ to be told I'm being silly. I've got a huge bills from the ER, vet, and school. I can't even begin to imagine what a neurosurgeon would charge me just to shake my hand, even with insurance.
I feel like I need some clarity before I take that step.
When I first read the report, I looked up all the symptoms, and I have some, like neck pain, vertigo, tinitis, headaches (usually start at the base of my neck), poor hand-eye coordination, trouble focusing, memory problems, weakness in my legs (which, I do have a pinched nerve in my lower back, but I've had this symptom for as long as I can remember). I sometimes have issues with breathing, but not sure if that's a symptom from swelling, or if it's not related (not asthma).
A family member has Chiari I malformation. This person gets episodes that are very disturbing and were initially diagnosed as panic attacks by a neurologist, even though the lab test showed a Chiari malformation. The episode would last a few days and sometimes include tingling in the hands, a headache, a heavy feel at the back of the head, and with a severe episode, chills and extreme thirst. After a visit to a top neurosurgeon, who said all the symptoms were typical, the family member was told that an operation could be done, that the surgeon had done many (hundreds) and because there was no fluid pooling in the in the spinal membranes, the prognosis was excellent.
Please excuse the loose use of terminology. I'm no doctor! But in some people, the Chiari malformation is so extreme that the cerebellar tonsils block a lot of the the normal circulation of spinal fluid which goes between the brain and the spinal chord, and a sort of hernia or bulge of fluid builds up in the spinal chord. This causes other problems. The doctor said that in those cases, the progression of damage would be stopped, but the patient could not always be brought back to 100%.
The doctor instructed no jogging, avoid excessive drinking during an episode because it could cause an increase in fluids, and ibuprofen during an episode. This person has chosen no surgery so far, and seems less freaked out, knowing what the problem is.
*raises hand* They won't call mine chiari, but instead call it low-lying cerebellum tonsil. So yes, I have symptoms. It is often down played b/c some people have it and don't have noticable symptoms. However, some may not look bad on film but yet are disabling to the patient. Interestingly, the size of the herniation does not correlate with severity of symptoms.
There is good info on www.prettyill.com as well about edema, or Intercranial hypertension, or Normal pressure hydrocephalus (NPH). There are some treatment options besides surgery, thought they tend to lessen symptoms, not relieve them.
Your brain trying to leave your skull is never to be taken likely. The brain and brain stem are very particular.
"You are a child of the universe, no less than the trees and the stars;
you have a right to be here." ~ Desiderata by Max Ehrmann
I have one too - diagnosed in college after a car accident required a CAT scan.
My aunt - my mom's twin sister - was suspected to end up pretty messed up from it (and some other things that were never diagnosed) before she took her own life.
I did have my films reviewed by a neuro and he said to not worry so long as the symptoms weren't severe or constant.
ETA - this was years ago, and now thinking about it, I am getting kinda freaked out by my vertigo that won't go away that I thought was flight-induced but I never had it before... and my headaches, and the feeling my throat has been swollen which I attributed to allergies, and the persistant cramp/pain thing in my left shoulder.
Last edited by Personal Champ; Nov. 8, 2012 at 01:42 PM.
good. i didn't read the whole thread, but just remembered it had been discussed before.
and not to make light of any cerebral condition, but i find it alarming that my brain has 'tonsils'....
but definitely get thee to a neurologist, and good luck!
With all due respect, DO NOT SEE A NEUROLOGIST, go to a neurosurgeon! This is based on my own experiences with this family member who went to two neurologists... neither of whom had a clue, EVEN THOUGH the second neurologist received the technician's MRI report diagnosing the low-lying cerebellar tonsils. Apparently, he just didn't pay attention or didn't know the symptoms. The first one didn't even run tests.
With regard to my family member, I give myself credit because his episodes would occur irregularly and the diagnosis by the neurologist just didn't make sense (specific head pain, extreme thirst, chills, vertigo, tingling/numbness in the arms or fingers or somewhere -- symptoms that all together didn't sound like a panic attack to me, especially when it went on for a few days). So I urged him to see a neurosurgeon. He did that and then got a second opinion from another top neurosurgeon who confirmed the first diagnosis. Both said he could benefit from surgery but stressed that his case would probably not progress, so he would have to make his decision by weighing the risks of surgery vs. the degree of pain/disruption of life caused by the condition.
What I learned from this, and I'm sure I'll get a lot of dissenters because two neurologists do not represent the whole profession, but I am firmly convinced that a neurologist just... ...ain't no brain surgeon.
Last edited by PeteyPie; Nov. 8, 2012 at 11:46 PM.
Reason: wrong word
I have it as well. My kids call it my "Jiggly Brain". First time it was diagnosed I had had a very slight fall and then mucked out the barn. Started getting the vision problems and the dizziness then my left side went numb and I really thought I was having a stroke. A friend took me to the Emerg and they diagnosed Chiari. That was about 6 years ago and luckily I've had very few problems since then.
The Dr. told me that anything that would make my brain swell in the least would bring back the symptoms, so of course I shouldn't ride. (As if!)
In fact I had a bad fall the other week and was really waiting for the shoulder/neck pain an headaches but I guess I got off easy that time.
I've been told that very often it doesn't progress and lots of people have it but don't even know t. In fact, I read a study that suggested that some people who are diagnosed with fibromyalgia actually have ACM but are never tested.
My point being, you can live a happy life with minimal problems with ACM. You just have to be a little more careful. No rollercoasters!
Your beliefs don't make you a better person, your behaviour does.