newly diagnosed and looking for options

[alexajoelle]

Hello all, I have been reading through some of the Q and A's here and had some for myself. I am having debilitating headaches and migraines continuously for about just over 2 months. I have constant insomnia and get really groggy if I take a nap in the day time. I'm not sure how big the herniation is but I. See a. Neurologist tomorrow. In just want to know any good (nonaddictive/ nonnarcotic) meds I should see about.

Was also wondering if anyone could recommend anyone good around the Ithaca, NY area.

Thank you!!

[selmaS]

  We have a list of "unoffical symptoms" since even the Chiari specialists do not accept ALL the symptoms we deal with....but there are many more then what the official lists include.

U can use the search this community feature to locate that older thread...and compare some of ur symptoms to those on it,,...

Blurry vision is deff a Chiari issue...but that is just the tip of the iceberg....

[alexajoelle]

Ugh haha I'm 19 and in college so this is incredibly frustrating. I appreciate the help and am so grateful for your comments making me feel better about my situation.

Now that you say something I realize the only other symptom the ns asked about Was blurry vision. I really need to find another dr haha

[selmaS]

  It took me years to find out ...MRI's were not around and then not routinely done to DX issues like this once they were being used....so, for many of us older Chiarians it may have taken a longer time to get a DX....but once we did, then we have to look for a Dr that is well informed with ALL the related conditions so it can take up to another year to fully research everything and know you have the right Dr.

[alexajoelle]

Thank you Selma! I appreciate your input. I will definitely keep you posted. Nice to know I'm not the only one who can't seem to get it figured out!

[selmaS]

  Many of us have been told the Chiari is not the cause of the symptoms and then we get the "royal Chiari run around" from one Dr to the next....with one DX after the other....I too was DX'd with migraines...funny how I feel better now after having had the decompression surgery then I ever did with meds for migraines.....

Only time will tell how u will do with the meds....good luck and do keep us posted.

[alexajoelle]

I have been diagnosed. I have the brain and cervical spine MRI. The Neuro I saw today said it was a small herniation and he thinks I'm just having migraines and they are not caused by the chiari. I'm not so sure because he did not ask about any other symptoms I was having. I am going to see another doctor at some point (they are making an appointnent) and am going to be treated for migraines rather than for my chiari.

I'm skeptical because I have a ton of chiari symptoms but the ns said because I can feel a headache coming it isn't from my chiari.

Thank you all for responding!!

[Elisaandbucky]

Hi alexajoelle,

I can recommend The Chiari Institute in Great Neck. I was impressed at my first appointment with the concern of he staff, and most specifically with Dr. Bolognese, who will be doing my surgery on 7/29. I am not sure of the geography between Ithaca and Great Neck, but I am in Charlotte, North Carolina and I am grateful to those who suggested that I find a surgeon who specializes in treating chiari malformations.

I am new (today is my first day) so I hope this response gets back to you.

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, have you had a brain MRI and a cervical spine MRI?......Make sure you request copies of the MRI and the report as this will make going for another opinion faster and easier....Ask where you had the studies done, not from the Dr as they will charge you and the facility that did the study should not.

As Frankie mentioned we do have a list of Drs and it was compiled by the members here of Drs they have been to, treated by and liked, that does not mean they ALL are Chiari specialists...so you do need to research them.

I am not familiar with NY state, but know there is a place in Great Neck on Long Island....and several others in NY....start with researching them and go from there....you may not find a Dr close to home, many of us do travel to get to a Dr that is well informed and experienced with Chiari and all the related conditions,.

Know you are not alone <3

[frankie_rush]

I bumped up the doctors list.  Remember these are not referrals, they are Dr others have used and consider.  Here is the name of the list  

List of Chiari Drs USA ~~~2013-2014