I really can’t take any more of this immense pressure in my head. Along with the ringing in my ears, the headaches, the balance issues…the symptom list goes on and on. Why does God allow us to suffer like this? Sorry for the whining, just need to find a way to make it stop.
I'm sorry you are feeling so terribly. Did you get the report from your CINE MRI back? No matter what the report says if your current NS isn't helpful please don't give up! Seek out another doctor until you find one who understands what you are going through!
Have you talked to your primary care doc about some pain management for the interim while you wait to get another NS? If your pain is really out there consider the ER too. they should be able to get the pain down to lower level to get you some relief from it and catch your breath. I know, this pain is no joke. Why??? If someone really knows I want to know to! I think life can have really amazing parts, really painful parts, and the grays in between. This is a really painful stretch right now but it’s not going to last forever, just keep that in the front if your mind. The deeper the valley, the higher the hilltop. I hope it helps a little that your not alone.
Jenn
Finally got the written report in the mail that I requested from my NS of the final radiologist report from the CSF flow study…
- Cerebellar tonsils lie 2 mm below foramen magnum with peg shaped cerebellar tonsils and crowding of the foramen magnum.
Ok, so my first MRI in May showed 5 mm herniation. I know the difference may just be that the MRIs were done at different hospitals and read by different radiologists but I was kinda surprised at the difference.
- “Phase contrast CSF flow sequences demonstrate appropriate CSF flow at the level of the cerebral aqueduct. Additionally, there is appropriate CSF flow seen at the anterior and to a lesser degree posterior foramen magnum below the level of the cerebellar tonsils. There is CSF flow pulsation seen just inferior to the cerebellar tonsils. No definite flow is seen immediately adjacent to the cerebellar tonsils between the cerebellum and the opisthion.”
So if I’m reading this right, on the back side of the cerebellar tonsils there is no flow at all. To me, that doesn’t sound like a good thing. Am I wrong? How much can your CSF flow be compromised and you still be ok, even being in excruciating pain? And he thinks my symptoms aren’t chiari related? He thinks I wouldn’t benefit from surgery? Or is it just because he doesn’t want to deal with the risks of operating on a fat girl? I’m just frustrated. Don’t know whether to follow his suggestion of seeing a NL first and ruling out everything else, or trying to find another NS and try the process all over with them. Ideas/suggestions/thoughts? Thanks!
Your symptoms sound all to familar, I was diagnosted with a 9-10mm herniation in July of this year. My headaches, balance and vision imbalance have gotten progressivly worse since then. I finally found a neurosurgeon that listened and ordered the right test. MRI-CINE and I had a significant CSF flow blockage. I am scheduled for surgry in Dallas next Tuesday.
Finding a Dr that has experience with this condition is imperitive. I have seen 3 NS since July and 2 NL that just wanted to medicate. I am praying the decompression surgery will alleviate the headaches.
Praying for a good outcome from your upcoming surgery Edwin! Glad you were able to find a good NS! Keep us posted on you’re doing.