Taking Control!

[lilmiss1999]

I had an appt with NL today to go over some recent tests she requested. I brought up my recent loss of gag reflex and she confirmed it (with a tounge depressor halfway down my throat)
lol

after going back over all symptoms (pressure head pain, full body tremors, visual disturbances, no gag, fatigue, neck pain, etc)and meds that have not helped at all....she said my 5mm unremarkable Chiari is not my issue and she truley thinks that I have some form of migraine.

ARE YOU KIDDING ME?

I imediatly called my insurance after leaving her office and confirmed that I dont need a referal to a specialist.

I have heard great things about Dr. E in Seattle and called his office. I will be sending all my medical records and MRI to him tomorrow for a review.

I know many of you have told me I may need to take this into my own hands....so here we go!

Thank you for all of your support and I will keep everyone posted on what Dr. E finds.

[lilmiss1999]

Not sure if you live in the Northwest. I am in Oregon. The drive for me will be about 6 hours but will be well worth it!

[lilmiss1999]

Dr. Richard Ellenbogen is at UW in Seattle. You can google him. Seemes to be a great Chiari NS. His office was absolutly wonderful when I talked to them. I am excited.

One of our members had surgery by him not too long ago and had great things to say.

Even though we are sometimes forced to get things done, at least WE are in control for once. There are too many days I feel that I have lost control of my life.

Have a great day!

[Sweetpea32]

Could you get the information on Dr E? I am too looking for a second opinon on my symptoms. I hope things go well with him and you find all the answers you need. So sad we have to take matters in our own hands but I know once we get to the correct people, things will get better. Keep you head up and keep up posted!!!

[lilmiss1999]

I know from everyone here (and from my research online) that the size of the herniation is not the deciding factor. It is just what I hear from both NL. Should have put it in " ". lol

That just adds to the frustration. I am very hopeful for learning about what Dr E has to say. I have still not had a CINE MRI so hopefully he will want one. I would think so.

I really appreciate all the support I have recieved on this forum. It means moe than words can describe.

[selmaS]

Hi...I have heard good things about Dr E as well.....and we all know too well how frustrating it is to deal with the medical professionals that do not continue to learn new ways to view and treat this condition which is not rare or asymptomatic until later in life...they have all the wrong info!!! U r doing the right thing...keep us posted on when U get in to see Dr E.

"selma"

[shanmomof3]

Don't ever say your herniation is borderline! The size of herniation is NOT the most important thing when looking at chiari. My herniation was 3-4 mm, but my csf was 90% blocked, and I had MAJOR overcrowding. Oh, and I had decompression surgery 6 weeks ago! Just make sure you get a Chiari Specialist!!!

Blessings ~ Shannon

[lilmiss1999]

I have realized that finding anyone that has true CM experience is the most important thing.

(this Neurologist was my second opinion)

Because of my borderline CM herniation no one so far has taken me seriously.

It is very frustrating when you hurt everyday and you are putting your well being in someones hands that makes excuses about your symptoms. I just feel like I am getting brushed aside. Might as well tell me I am crazy.

No more!

Thank you again.

[rod44]

It is important to find an NS with CM experience and even then you may want to get a second opinion. You are your own best advocate and know when something just is not good. Stay positive & strong


Ray