Thank you to all who offered suggestions and understood! The champagne cork description is one that I keep telling the doc, except that I feel a pop to it after a while. I have a fresh mri this week which shows the tonsils have descended a little more, just like I thought, but I just dread the hassle of going thru a reevaluation. It does correlate to the increasing symptom like you said Selma. Again thanks!
I described this type of pain (which I had pre-surgery for about 2 years) like this: "I feel like my head is a champagne bottle with a cork ready to pop". OR "I think I would feel better if I had a few holes to let off the pressure inside my head". My local NL still does not believe I had anything other than "typical migraines" (I don't see him anymore!); however, the pain NL at Columbia knew exactly what type of pain I was describing. I would go to a Chiari specialist...sometimes docs only use the "tools" they have in their "toolbox". {{gentle hugs}}
I guess I should ask, I am not the only one to be sure the pain is IN my head, not on the surface of the skull?
Will check out the list. Yes pains in head are more abrupt and higher on the pain scale. I have had the pain come on from a slight turn in my neck or a small tightening in the abdomen area, like a gush of pressure in my neck with a fluid feel and white hot pain up to in my head. It has always hurt but not with this intensity. NL is doing a MRI of the brain and a cat scan of the neck. In the past two months I have had my child roll off the sofa onto my shoulders, a lady in bleacher seats tumble down on to my shoulders, and a lab jump on my head as he was jumping in the pool and I was rising out of the water. Who needs car accidents. :-). Any way yes that and a lot have changed. So I guess after these results come back I will have to find time and a doc to reevaluate. Alo I have had kidney stones from taking diamox.
Have ur symptoms changed? Have u had a more recent MRI? Since changes can occur, symptoms r the first indications and a reason to have a new MRI other then at least once a yr to monitor it.
U have the old ones to compare to....
I know there were a few Drs on the list for TX not sure if they were right in Houston, do check out our list and research the Drs on it.
Thank for your suggestions. I do have the letter from NY on file with NL. I keep it handy but now it is about five years old. My NL believes there is no progression of a chiari- like a birth mark doesn't change. Funny- my birthmark changed over the years. Any way I guess I will always have frustrating conversations with him- but he is local and does take care of the occipital neuralgia. Maybe I should try harder to find someone in Houston which isn't far away. I will take a look at NovaSom. Thanks again!
Hi and welcome to the Chiari forum.
As for ur CPap there r new masks and ways to get the air delivered to u........check out comps like NovaSom they should be able to help,
U may want the NS's at TCI to copy info to ur local NL so they r on the same page and u get the help u need when at home....
Rylanesmom made a good suggestion in mentioning that.
Do check out some of the new C Pap devices that r out there, u do not need those cumbersome harnesses nemore....
I am sure u will be able to get this issue resolved.
NL is not a chiari specialst and most treatment doesn't help...you could have NS from chiari institute wite NL a letter specific to you