Preventing syrinx & discomfort sleeping-if I could only drill a hole in my skull

Hello! I am just starting my research on Chiari and I wonder how much time do Chiari patients have before a possible syrinx can develop (there is probably no good answer for this right?)?
I hit my head at work 2 months ago and, after having progressively worse migraine? headaches (along with other symptoms of Chiari), was diagnosed 3 weeks later with post concussive syndrome. My doctor (and apparently radiologist) does not believe that my low lying cerebellar tonsils found on CT and MRI are Chiari, just ectopia. I was not given the report (so no measurements). I am not going back to this doctor, I will get a second opinion. She told me the MRI will also check to see if I have a syrinx. I remember asking if it will be of my entire spine (because L5,S1 is herniated and has flared up almost daily for 3 years). She said no. I asked for a cd of my MRI before leaving and my neck was not scanned at all (maybe it doesn't need to be but I see other MRI images online and they have the neck). Not that I want to be diagnosed w/CM1 but if I don't get a second opinion from a specialist I will always wonder (especially if this continues).
So, now that I will research which doc to see next and it may be a wait, the little research I did so far leads me to believe a syrinx would be really bad and I wonder if Chiari patients are always in fear of developing one. Besides surgery, can a syrinx be prevented?

My biggest discomfort, besides the daily migraines, is the pressure in my head when I try to sleep. I wish I could put my head in a vise at night because if my head falls to either side I don't sleep, hurts too much. I try rolling towels and putting them on both sides of my head. I can't sleep on my side anymore, which is how I always slept so that my lower back didn't hurt. Oddly enough, during the day I can lay on my side on the couch without too much discomfort. I do feel that If I hold my chin up too long, pointed up at a 45 degree angle, that makes things worse.
I've attached (or am attempting to attach) one of only 3 sagittal views of my cerebellum. If you have a similar MRI view and can give my more info it would be appreciated.
Thanks for listening
Cali
633-MRI1.jpg (50.4 KB)

Hi...

1st wanted to say that ectopia is the same as Chiari....tonsils are not to be out of the skull......That is what I have learned anyway...Can you get the written report ???? It would be interesting to see what the radiologist says....as far as measurement of herniation...but one must keep in ind that studies are now showing that in the case of Chiari...size does not matter...mine was only 5-6mm...and cased me MANY problems.

I do not understand why your neck was not scanned....I would get another doctor....You should have a full spine MRI to rule out a syrinx...IMHO.

Good luck and let us know whats going on.

Peace,

Lori

Thanks Lori, you are the second person on there to say that ectopia is Chiari. I am in the processes of faxing a letter to my dr asking for the report to be faxed to me. I also asked for something to help me sleep. I agree about getting another dr, I’m googling the ones in Philadelphia. There is a academic headache clinic at Jefferson hospital, maybe I’ll start there. Thank you and Happy Halloween!

Cali, I am from Philly and had my surgeries there. I could hook you up with great Dr's. They are amazing!!

Cali said:

Thanks Lori, you are the second person on there to say that ectopia is Chiari. I am in the processes of faxing a letter to my dr asking for the report to be faxed to me. I also asked for something to help me sleep. I agree about getting another dr, I'm googling the ones in Philadelphia. There is a academic headache clinic at Jefferson hospital, maybe I'll start there. Thank you and Happy Halloween!