Hi Beth, I’m so sorry that you and your daughter are going through this. One mom to another, it sucks. Now having said that, may I throw out a few thoughts for you to consider and chat with your doctors about?
First, the ocular (eye) pressure has nothing to do with the intracranial pressure. So you can relax there.
Two, I agree about your daughter’s subarachnoid space EXCEPT in the space above her cerebellum (do you see that space above the hind brain?). That area makes me wonder if it could be trapped with fluid, pushing down her cerebellum and adding to the crowding of her brain stem area. CERTAINLY before any invasive procedure, I can’t believe there would be a doctor out there who wouldn’t be willing to try Diamox. If it lifted that area of her brain and took out some of the fluid in the cisterns around her brain stem, she may be home free, or drastically improved. It does worry me about the changing vision when she moves her head. I was to the point, though, that I felt like I was passing out when I moved my head (although I wasn’t). It was horrible. I could tell an immediate difference with Diamox, but it took weeks to months to get the full benefit. Things just continued to improve.
Finally the mast cell stuff – again, the beginning treatment is fairly benign — especially compared to Chiari surgery, neck fusion, etc. Again, two days of double dose Zyrtec/Zantac (ask your doctor first) started to turn us around (my son and I). Two weeks — even better. Two months – even better. We are now going to start the Gastrocrom (by prescription). If you go to http://mastocytosis.ca/ and look at the “Patient Experience” letter, it will explain how treatment even without testing is working well for so many of us. It appears that the tests for it are very lacking (and too stringent). That will change.
So that’s my personal 2 cents. My son and I were headed for neck fusions and brain shunts, but I knew they were missing something. We were both triggered by a virus, so I knew it couldn’t all be anatomical.
If you get some relief with medical management, great. If not, then surgery will always be an option. I just like to think of it as a LAST option… I hope this helps some.
Big hug,