I am glad I found this site, and already had a warm welcome after posting my bio. Thank you!
A little background for me. I am 31 and have two boys that are 8 and 10. Both had complicated medical issues at birth and 11 surgeries total between both of them. My oldest has a really rare genetic disorder. My youngest one was born with Pierre Robin (cleft palate, small recessed chin) so he had something completely different then my oldest. When L (my 8 year old) was around 10 to 12 months old and started to pull up on things to stand we noticed his knees would lock and we would have to push them from behind to get him back down. His PT at the time noticed his legs were not the same length and the amazing doctors at Riley ordered an MRI and that is when we were told he had a Chiari. He was having the "baby break downs/baby headaches" and we had no idea. He would always lay his head down on the floor in the middle of crawling but we assumed it was just low muscle tone and he had a larger head :) We had no idea why he was really doing it. He also had swallowing and excessive drooling with acid reflux and constipation issues going on. With the feeding issues we assumed it was due to the cleft palate as that is very common even the drooling.
We met with a neurosurgeon at Riley the next week and before we knew it he was having the decompression done. It had to be done before they would repair his palate. All in all he had 3 surgeries in 32 days. But the chiari surgery was a miracle for him. He was crawling up the stairs 4 days after surgery! He also didn't have reflux any longer and was a completely different baby! It truly was amazing and still 7 years later he is doing amazing!
My oldest son T was then referred to neurology for other issues of his own and had just a CT Scan which showed an arachnoid cyst that in 7 years hasn't changed or caused any issues for him.
I started having migraines about 4 years ago. Severe migraines landing me in the ER or immediate care for shots of nubain to shots of toradol with phenergan. I have tried sooo many preventatives and abortive medications and none of helped, or have caused too many side effects, or even allergic reactions to. The only thing I can do for my migraines is narcotics, vicodin, and if the vicodin doesn't work or I start to lose vision I use percocets, and if that doesn't work, its a trip to Immediate Care which thankfully has only happened a few times lately.
I had asked my PCP awhile back about the possibility of Chiari but was always told that it was a slim chance or it isn't hereditary etc. I did have a CT Scan a few years ago which was "normal" Well finally when I went to my doctor in December I pretty much demanded an MRI. She of course was mainly cautious to order one because of the expense, but I have been telling her for a year that my company has awesome insurance, and any tests including MRI's I get done at a specific hospital are no cost or out of pocket to me. Yes I am very fortunate in that aspect. So she then ordered the MRI of the brain and cervical spine which I had done last Thursday. (without contrast)
I got the call yesterday with the report. (and got my copy today) and this is what it says
"Diffusion weighted images show no evidence o restricted diffusion. Sagittal images show presence of low lying cerebellar tonsils consistent with Chiari 1 malformation. Flow-voids are noted within the vertebral basilar system and both internal carotid arteries. No areas of abnormal signal are noted within brain parenchyma. Gradient-echo images are unremarkable."
"Impression: Chiari 1 malformation, examination is otherwise unremarkable"
Another section states this:
"Coronal localizer shows no evidence of significant Scoliosis. Saittal Images show no evidence of subluxation or dislocation. Low-lying cerebellar tonsils are noted and consistent with Chiari 1 malformation. Normal marrow signal is present. Cervical Spinal cord is normal in size and signal intensity. Axial images demonstrate the following:
C2-C3: The spinal canal and neural foramina are patent
C3-C4: The spinal canal and neural foramina are patent
C4-C5: The spinal canal and neural foramina are patent
C5-C6: Mild disc bulging is noted. The spinal canal and neural foramina are patent
C6-C7: The spinal canal and neural foramina are patent Mild disc bulging is present
C7-T1: The spinal canal and neural foramina are patent"
So I understand the chiari is present, but I remember when I got my son's report it was a lot more detailed with the severity and the MM length of the tonsils. Could that be because it was from the neurosurgeon? I assume I won't get a lot more information until I find a doctor. Which I have been researching to find one here in Indy or around here that specializes (truly specializes) in Chiari. I even called my son's neuro and asked them and they gave me one name, but that doctors bio does not mention Chiari. I do not want some one that isn't extremely familiar with this ya know?
So what symptoms am I having other then severe migraines? Vision, I have always had 20/20 vision and even when I do not have a migraine or headache some days my vision is blurry, and some days it seems perfect. Which I already have an eye appointment made for next weekend (before knowing about the chiari) Also hearing, some times I hear the ringing noise in my ears, and some times it is like people are talking in to a well, or I have to ask them to speak up. But this is also not all the time or every day. Muscle tenderness which I have asked my doctor about for months and I don't know if it could have anything to do with the chiari or not. My thighs and arms specifically, if I push on them (or say a kids elbow right on my outer thigh) sends a sharp shooting pain down and up my body. I have noticed some balance issues at times. And weakness, mainly in the mornings until I "get going" I feel like mush! Fog brain as I like to call it.. some times I just can't focus on what people say, so I have to have them repeat it or reword it in a different way. Something I have never had issues with.
Any suggestions or input on my novel would be greatly appreciated. I have not looked at the scan myself yet since I am at work but I will be tonight. Don't know how much I will be able to tell or if they put notes anywhere on it but I would really like to know more details about the actual results. I assume when I do find a doctor they will order another MRI too which is fine.
The thought of surgery is scary BUT at the same time, the thought of what all it could cause in the future is worse. And I know surgery isn't an automatic thing but if I could be migraine free I would be a very very happy person lol
I look forward to getting to know everyone!