Appointment with "New" Neurologist ~ Finally...

On Feb 9th (I think) I made an appointment with the Neurologist my Neurosurgeon referred me to, Her name is Dr. Andrea De Leo.  Her Office is in Munster, IN. Her first available appointment was not until Monday, March 28, 2011 "NOTHING" earlier, I thought I'd die when I heard the receptionist say that! So I waited weeks, and had a few more surgeries!

My husband started his new job with the Boilermakers the week prior to my appointment. He was called out on a job that was 5-12hr shifts, and then it would be done, he would have to wait to be called out on another job... Someone was looking down on us that Monday morning of March 28th, because thankfully he did NOT get a call to start another job that day, and he was able to accompany me to this new Dr's appointment. (He did get called on Tuesday to start on Wednesday thank God!!) It's not that I didn't have a way to get there, it's just NOBODY knows you better than your spouse, and my brain is so screwed up that I can barely remember what I did yesterday, let alone going through my whole history, again... with a new Dr.

It's a short drive to Munster, THANK GOD! Lol... I have horrible Anxiety in the car!

Dr Munoz sent over an letter to Dr. De Leo, introducing me to her (re: my history), and she got my records from my prior neurologist, that I only saw about a dozen times, and I brought my most recent Head CT & MRI for her to review. To my surprise when she walked into the room, she was either my age or just a bit older... She is a Vascular Neurologist, and SHE was totally blown away while I'm telling her my story. She sat with my husband & me for almost 2 hours, and she never rushed us!!!

She did the "regular" Neuro Exam after I told her my very lengthy story, but she performed some things I've never seen or had done before. I don't even know what they were to tell you! I really liked her, for a first visit. I guess I will need to see her a couple of times before I have a true opinion of her... BUT so far, so good! : ) My last Neurologist treated me like all I wanted was drugs, even though I NEVER once asked him for anything, except a spinal tap when I knew I was having Shunt Malfunction. He didn't believe me in May 2010 when I told him something was going on, then in September 2010 (still having issues) I told him I needed a Spinal Tap and that my shunt wasn't working properly, and he told me that there was nothing wrong with my shunt, and that he couldn't help me any longer. Later, I got a letter from his office in the mail, they cancelled all my future appointments, and told me he would no longer see me as a patient! Then in October 2010, I had a spinal tap ordered by my NeuroSurgeon, and sure enough, my pressure WAS elevated... Dr. De Leo was blown away by his actions, and she seems VERY sincere, and interested in getting me better...

These are the tests that she ordered for me...

CDP ~ Computerized Dynamic Posturography- balance test
VNG ~ Videonystagmography - for testing inner ear and central motor functions
ABR ~ Auditory Brainstem Response - a screening test to monitor brainstem response and hearing loss.
VEMP ~ Vestibular Evoked Myogenic Potential - is testing on the inner ear. (Balance & Dizziness)
TCD ~ Transcranial Doppler - measures the velocity of blood flow through the brain's blood vessels.
EEG ~ Electroencephalograph - records the electrical activity of the brain.
Neuro-Rehabilitation with an Occupational Therapist, due to balance & dizziness issues.

~A new Sleep Study - Apparently, when you have Sleep Apnea, you should be tested once a year! I haven't been tested since the original test in August 2009. I developed Sleep Apnea because my Chiari Malformation narrowed the space in my neck.

~Referral to my Ophthalmologist ~ Dr Scott Cory, I have Papilledema in both eyes, Right eye is worse, due to Chronic Intracranial Hypertension, she ordered a bunch of tests for him to perform.

~Referral to a Neuro-Ophthalmologist for possible Optic Nerve Sheath Fenestration surgery, to relieve the Papilledema. Dr. James Goodwin @ UIC in Chicago.
And lastly~ a referral to a therapist for my depression... : (  Ughhhh... Tried it once before, & HATED it.

Lastly - Dr De Leo wrote me off work for another 8 weeks while I get all these tests done! My new return to work date is May 16, 2011.


Quote of the day from a FB friend.
To feel pain, is to have feelings.
To cringe at the light, is to see,
To run from the noise, is to hear.
To have a bigger brain than most, is a heavy medal to wear, yet we think deeply!


I am very thankful for all my new friendships, especially the ones who are right in my own back yard!!!

NOBODY can relate you my problems like a fellow IH'r & Chiarian...