Chiari pain description not understood by doc

Hello all.  I was at the local neurologist today.  I know he doesn't believe the chiari has anything to do with my pain.  I have been to NY to the chiari Institute and been dx'd with chiari and cranial instability, and hyper mobility with messed up CSF flow.  Yet when I described this inner bulging pain from mid neck up to the area around my right ear from the inside out he always redirects me to the occipital nerve pain, which I do also have.  How can I best communicate that this is internal?  The are three areas that to me feel like a hatchet in my head when I have bad headaches.m On the occipital nerve pain which is clearly on my scalp are there any suggestions to protect this sensitive area from the cpap harness?  I am getting no where with my supplier or doc?  Thanks!

[Rylanesmom]

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

[selmaS]

  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.

[Trishahers]

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!

[selmaS]

  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.

[Trishahers]

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.

[Trishahers]

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?

[actressmouse]

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}}

[Trishahers]

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!