I got my MRI report today. I decided to request a copy when my doctor told me the cerebellar tonsils were a little low lying and that it wasn't a problem. I got home and googled it to see it is a problem and I have a lot of the symptoms. So, I decided to do my homework and get a copy and this is what it reads:
The cerebellar tonsils appears somewhat low lying about 7 mm inferior to the foramen magnum. No masses, mass effect, or midline shift is seen. No extra axial fluid collections or evidence for intracranial hemorrhage is see. The ventricles, sulci, and basal cisterns paper to be within normal limits. There is mild mucosal thickening of the right ethmoid sinus (which I already knew). Minimal T2W hyper intensity is seen in the left mastoid. The orbits appear to be within normal limits.
Impression:
Low lying cerebellar tonsils
Mild right ethmoid sinus disease
Possible mild left mastoiditis
Now, I'm mad. He didn't even diagnose me with Chiari, when clearly, I have it. Not only that, but he FAILED to tell me that I may have an infection of the mastoid bone, which can get very serious if not treat immediately. I'm getting a second opinion from a new neurologist tomorrow. But right now I am so mad at the stupid neurologist that calls himself a doctor. How did he ever get through med school?
It's so important that we all read and look at all our tests. It is inconceivable that doctors don't inform us of everything that is going on. 7mm is significant and he/she should have told you that you had Chiari. I have never had good luck with neurologists. They always seem to minimize the effects of Chiari. I hope you have better luck tomorrow. There is no harm in being a stong advocate for your health and your quality of life. There is harm in not being one.
I am at a 7mm and am looking at surgery. I do have a ton of the side affects of this and they get worse all the time. You need to look at the Neurosurgeons, the ones who specialize in this. I live in Texas and go to Colorado for mine and I have met with several here but when it comes to this surgery, you need to go to the one that does it all the time, not just a handful a year. I think that the problem is that most neurologists still dont understand Chiari all the way. I was lucky when I got diagnosed. It was actually by my family dr. He had never heard of it but I spent about 2 hrs in his office as he got on the computer and looked up what all he could and then did the best he could to call around and try and get me in with someone that understood it. Keep looking, you will find the right one. Also post on sites like this where you are from and maybe someone can give you a good ref.
I am from Texas as well, in the Houston area. But i'm afraid that I won't be able to get much help soon. My pregnancy medicaid will run out in about a week from now and after that I have no insurance, do not qualify for medicaid without being pregnant, and can't afford doctor visits especially surgery. Although I have a lot of symptoms, they are not that bad, or debilitating. I still do stuff around the house, i'm so active with my kids, and the only reason I haven't driven in a long time is because I just hate driving, but i'm about to have to in order to get my son to school. I'm never bed ridden unless I have what I call a "throw up migraine" and even that only happens at the most 2-3 times a year. For the most part I just have headaches here and there and they are more annoying than painful. I don't feel bad enough to want a major surgery like that. Not to mention I just had a baby 2 months ago. I don't want to spend time recovering from a surgery and not be able to pick him up and hold him and take care of him.
Ugh, I feel for you, retromommy! I am *still* waiting to see a neurologist/neurosurgeon and it's been a MONTH since I was first tentatively diagnosed at the urgent care/radiology department. What are these people doing?!
My measurement is 16mm and I’m waiting to see a n/s in Melbourne. I went to see my dr thinking I had a brain tumor, so when he suggested a ct scan for CM, I was a bit relieved!!! I hadn’t heard of it and went straight home, looked it up on Google and found I had so many of the symptoms. Be patient and it will happen.
I had thought the same thing. I was so scared I had a brain tumor. But i'm really scared that I have this too. I'm only 23. I don't know if you can die from it. Or what serious risks go along with surgery for me, or if the surgery is even nessecary. I'm so overwhelmed and I'm freaking out.
