is it chiari

[1lizzy1]

Hi just got back from seeing neurologist He said I  dont have chiari
just low lying tonsills within the normal range asked him what could be causing my balance, vertigo, light sensitivity, chronic neck ache  and various types of head ache fatigue etc and now is saying no chiari present  said ive to see ENT about my vertigo  on the scale 39.5mm is this chiari or not sounds like it I dont know what to do advises physio therapy

[n40066]

lmao!  tell him he needs to go to a few more meetings!!!  lol!  get another dr, darlin!  don't waste anymore time with this quack.

[1lizzy1]

Hi Lizzy here the Dr /NL I saw wouldn't tell me exactly how low the tonsils were but looked about 5-6mm he was quite officious claimed he was a chiari dr as he went group meetings every six months LOL so I  still dont know where I am told me I need to take my symptoms back to GP

[n40066]

some specialist will review your films for no cost.  and once you have that dx, it may be easier to move forward with your insurance!

[selmaS]

HI .....our other "Lizzy" is right in what she is telling u regarding herniation size...too many drs look at size instead of CSF blockage and overcrowding...which are the main issues.

Since u have symptoms, and this does not fit this drs understanding of Chiari u r getting what I like to call the Royal Chiari Run Around.....we all tend to have the same thing told to us when we go...even those with a 5 mm or larger herniation,...on my report it said herniation size was comprable (sp) for age....???? meaning at my age this is normal?....I have no idea where that dr went to school, but I never went back to him.

U will want to get other testing and mayb the ENT or ur PCP will help u get them ....a CINE MRI to check CSF flow....and u should be evaluated for Ehlers-Danlos....tethered cord.....sleep apnea....a syrinx.....

I am not sure if u can get copies of ur MRI's where u r, but if u can, try to get all copies along with the reports so u can send them off for review.I  am aware this may be difficult with the insurance and they way things r done where u live, but it is one thing u can try to do to help move things forward.

"selma"

[n40066]

ummm...i don't think you typed that right...you're saying your herniation is 39.5mm?  did you mean 3.5mm maybe?  the dr you are seeing is not well aquainted with cm.  anything below the level of the fm is a chiari malformation.  but what you have, drs consider to be a chiari 0, as it is less than a 5mm herniaiton.  recent studies have shown that size is not as important as once believed to be...that blockage of csf and overcrowding of the brainstem are what is important in dxing chiari.  many people with chiari 0 have as many and in some cases even more symptoms than someone with a large herniation!  i would strongly suggest that you not waste anymore of your time or money with local drs that are not current with or specialist in the field of cm.  send your films to a specialist for review.  not only will they be able to better care for and direct you in your care, but will also know to check you for other things like csf blockae, eds, syrinx, .....
good luck and keep us posted!!
elizabeth