So glad to see this!

[Lcmill]

I was diagnosed with a cerebellar tonsil (9mm) about 3 years ago.  I have a neurologist who is not very supportive and thinks that my symptoms are in my head. (no pun intended) :)  He prescribed tramadol for my headaches, and now I am weaning off of that med and experiencing withdrawal symptoms.  I know I need to find a better neurologist.  Where do I begin?  My GP is the one who recommended this particular neurologist.  Thanks for listening. :)

[littleadjustments]

Hi Lisa, check out my blog - I was recently diagnosed and have been doing a ton better since starting this new treatment :)

http://*****************.********com/2010/12/30/could-a-headache-be-a-brain-herniation/

Good luck!

[selmaS]

AS of now we have not had the pleasure of having a Chiari dr on our site....we r trying to get one to pop one once in a while...if ur dr is interested, please contact me as they have to sign in with MedHelp as a Dr in order to participate.

I am not sure I understand the illness part of ur post, it was a long day for me and I am not comprehending...will try again in the AM

"selma"

[not_all_tonsils_are_in_your_throat]

we have experiened the same run around (even by"famed" neuosrgeons!)  I am starting to believe if it isn't a Chiari specialist, it isn't worth the consult.  My questions for the group..... do Chiari DRS ever log into this site to monitor what patient are going through?  Is there  PTSD for Chiarians?  I hear from many DRS and have read many individual Chiaran bogs "it is all in your head"  That makes me think the chiari may be causing a form of mental illness. I'm not talking about a problem that needs years of psychotherapy... I am talking about a possibility of an additional symptom that can be relieved along with the headaches and painful neck, the central sleep apnea, and tinitus,and gastro-dysmotility, and balance problems...  Because the term "mental illness": carries a negative stigma, we run away from that diagnosis.  If it IS an illness, and it is CAUSED BY the chiari and it can be fixed with surgery....maybe it should be included as a symptom to watch for?

[selmaS]

Hi Lisa....I am so glad to hear u r feeling better.

I have not tried the chiari pillow, but my DD bought me a homedics  memory foam pillow...it looks like a log that was cut in half...one side is rounded and the other is flat....I found this to be the best pillow for me and I still use it. I even had it in ICU......everyone is different as to what will work.

Good luck
"selma"

[Lcmill]

Thank you, all, for your support!  I plan to take things into my own hands and not be led blindly anymore by so many uncaring doctors.  Thankfully, my withdrawal from Tramadol seems to be waning, so I am feeling better.  I really want to try to deal with my pain without a prescription pain killer.  I have seen an article about a chiari pillow.  Has anyone tried one?  I was hoping that the pillow might help me sleep better.  
Thanks again for your encouraging words!  I really appreciate it!
Lisa

[WeddingJean]

Selma & Ray are both so right when they suggest a Chiari "specialist." My NL is not & the NS I've seen is 'experienced' with Chiari, but not a specialist. Both of these drs have given me the run-around. The NL I have been seeing for the past three yrs (first for possible MS & now Chiari as I was just dx'd in Sept of this yr) believes that my 10mm herniation is "incidental" & thinks alot of my symptoms are as you put it "in my head." He recently had me on Lexapro for two months & I totally lost track of my life & he's given me Tramadol for my headaches which I've only taken once because I'm afraid of the side effects after the Lexapro nightmare. I am looking into several Chiari specialists in my area in hopes of getting better answers & if I'm not successful with area specialists then I will travel.

As Selma said, you are not alone in this, most of are or have been in the same boat & and it appears that this is a very large boat. Good luck with your search  -Jean

[selmaS]

Hi...must agree with what Ray is telling u.....and ur experience is not that uncommon, most here have had the same thing happen to them.

Please read the poem at the top of the forum by Dr Oro to see that there r drs out there that do understand.
This is Y I mentioned getting a true chairi specialist to see u, as the other drs be they a NL or NS u will get someone that just not accept this condition can cause the symptoms...

....Please research the drs on our  list and see if u can locate one u want to try.

And know u r not alone
"selma"

[rod44]

Hi Lisa,
there are other illness that can arise due to Chiari that you need to be aware of such as Syringomyelia and tethered-cord syndrome...there is also the possibility that your herniation may cause an obstruction of CSF flow so the NS should send you for a CINI MRI to rule this out....

Ray

[Lcmill]

Thank you for your messages.  I will check for a Chiari specialist NS.  I feel so duped by my own neurologist.  I always had a feeling that he downplayed my symptoms.  I guess I was willing to believe him because I had never heard of this before I was diagnosed.  Thanks, again, for your support. :)

Lisa

[selmaS]

Hi and welcome to the Chiari forum.

As Ray has mentioned, a NS (Neurosurgeon ) is who u need once u have been dx with chiari....but not just ne NS as not all r as well informed or experienced in chiari treatments.

The NL (Neurologist) makes the dx and can follow care after surgery and may offer other more conservative treatments...such as meds.....

Depending on where u live u may need to travel to get to a Chiari specialist...see our list of drs compiled from members drs they have liked...please research all drs.

The list is in the Health pages here on MedHelp...see the icon top right of this screen.

If u need help navigating let us know.

Good luck
"selma:"

[rod44]

Hi and welcome...

From my experience as a Chiari/syringomyelia patent the person to treat Chiari is a Neurosurgeon (NS) and the only treatment is surgery to prevent the illness from progressing.

Neurologist (NL) deal with Nero Medical issues.

Ray