Open for suggestions :)

Lori Hackett-Shanks said…

Running on 7hrs sleep in the last 48hrs :( Had to drive all day today for work and my head hurt so bad (it was like dragging a dull knife into a raw chuck roast) the pain ran all down the right side of my neck and head into my jaw, ear and up the side of my head - ouch!!!! Actually thought about going to the ER but decided not to due to the fact that one of my best friends from h.s. mom passed away and then had a school Spring Fling to attend. No time to be sick today!! In short an ER doctor found my chiari almost 2yrs ago and I was sent to a N.S. he spent all of 5 min with me to tell me to return in 2 yrs for a follow up MRI. My symptoms got worse at 1.5yrs (thought I was having a stroke). Returned to the N.S. who tells me he can't do anything for my headaches to see a neurologist - I remind him that I had an MRI he looks at it tells me the chiari is better and come back in a yr. The office nurse calls me and tells me I have a pituitary tumor and to come back in 6 mo. which the neurologist tells me its a cyst guess its been there for 2 yrs also (N.S. didn't tell me this the on the first visit). In between all of this I asked for the radiologist reports which I find lots of info that no one told me!!! The neurologist says all the symptoms that I checked off of the chiari symptom list and made little notes on means nothing - that the symptoms I have are due to lack of sleep not my chiari - hmmmm - so I have an appointment to see another doctor for a sleep study and have been put on 900mg of gabapentin daily for the headaches. I know its early in the game but does this get better - God Bless You Crystal (Thank you for all your input)!!!!! I also have a mental health diagnosis but that doctor now says its neuro not mental - I think any neuro at this time would cause a mental (lol)!!! I live in central Illinois and my resources are very limited, I'm not afraid to go out on a limb to try to get the help I need just kinda lost and feel lost in the system. I realize that symptoms of one thing could be another but when does the merry go round end??

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Abby is right! They do contradict each other and we are left feeling like they are crazy! What they see as treatable and we we need treatment for are often two different things as well. The right neurologist is out there for you. Unfortunately, it may not be easy to find. Stay positive! and become a subscriber to 'whatever works.' Things will look up.

You’re very welcome Lori:) Like I’ve said before, DON’T GIVE UP! I know how it feels when your doctors don’t listen and don’t take your pain/symptoms seriously. I was treated like a hypocondriac, a crazy person, and a drug seeker…I am none of those things. I finally found a great doctor that can help me and you will too! You are in my thoughts and prayers:)