First neurologist appt....5 weeks post op

I had my first neurologist appointment since my surgery today....it has been 5 weeks already!!

This was not with the on-call hospital assigned neurologist....yeah - the one who walked into my room for no more than 5 minutes at a time and generously billed $300+ per visit AND not the one who could not fit me in until December 19th....... I am not playing a game when it comes to my brain tumor.  Why/How should a patient who just had brain surgery wait to be seen for two months after surgery?!?!?  seriously.....um, no!

Anyways - I found a neurologist at Moffitt Cancer Center.  Moffitt is outstanding in every aspect - from the moment you drive onto the property to have your car parked by valet to the moment you check out from your appointment.  I am so at peace with being under the Moffitt healthcare covering now.

As I waited for my name to be called - I looked at all of the others around me.  Not many people being that it was only 7:30 in the morning.  You could tell that some of the people were really sick..... like cancer sick.  There was one lady in a wheelchair who obviously was under the treatment of chemotherapy.  It was sad, but the atmosphere was a happy one.  The staff is so nice and they know the patient's by their first name.

I realized - no matter what we look like on the outside - you never know what is going on on the inside.  No one knew I was there for a brain tumor.....no one knew I had a scar and a bald spot on the top of my head the size of a man's hand. No one knew I was shaking and having uncontrollable tremors on the inside.

I had my hair in a ponytail this morning, but as always - it was giving me a headache (they make my hair hurt.....).  I was in a place where if someone noticed my scar and bald-velcro crown head - it did not matter.  No one is judged there. When I go out in public - I am very self conscious about my scar and bald-velcro crown head showing - always asking - "can you see it" "can you see it"? ......At Moffitt - you can let it all hang out and not worry about it.... so I did!

Actually - once I was in the room with the neurologist - he could not even tell that I had a scar and a bald-velcro crown head until I flipped my hair over my face. He was like "oh - wow".

After discussing my symptoms and concerns - he left the room to view my MRIs and CT scans from the ER, and before/after the craniotomy.  Well..... I must have really downplayed my tumor size.  When he walked back into the room  - he said "you had a very large tumor young lady!"  He was shocked at the size that it was and said that it had to have been growing for a very long time.

I had a list for the neurologist a mile long of questions and concerns regarding why/what/when/how.  He took the time to answer me.......and I will have you know - even though I had a list..... I still forgot to ask him about a few of them.  That is ok.  I am still one who is washing a load of laundry without putting clothes in the washer or.... going to the closet that was my former pantry to get food.....yeah - well.....


He is a very serious doctor and I respect that.  I tried cutting up with him a few times and when I did not get a smile..... I knew he meant business.... that is a good thing.  I am here for a brain tumor - not to make a friend.  He had a very worn out, zip up, leather style doctors bag - you know the one that a house call doctor would carry.  As soon as I saw that - I knew he was an experienced neurologist.

Long story short -

• My anti-seizure medication was increased. ugh.... I was hoping I could stop taking it since it makes me feel so bad.....  He says that my tremors/shaking are from the residual tumor.  We can't take any chances on me having another seizure - especially since my superior sagittal sinus vein is occluded......look that one up. 
• I still can't drive for at least another 4 months....he said that we will wait and see.  
• The lump on the right side of my neck is probably drainage from my brain or lymphadenopathy from the Dilantin (which gave me a horrible, nasty skin reaction).  If the lump is not gone or has increased in size - he is going to order a soft tissue MRI.  
• He is sending me for an EEG (a brain test that measures electrical activity) to see if I have had any recent seizure activity.  
• He is sending me to a neurosurgeon at Moffitt for follow-up and to discuss radiation therapy.  
• I asked him when I could go back to work and all he said was "as tolerated"......ok....well then.  
• Not sure if my memory loss is temporary or if it will get better with time.  He said we have to wait and see..... ok.  
• He does not recommend physical therapy for my right-sided weakness. I guess I shall lace up the Rebooks and hit the pavement..... one mile at a time.  
• I am sure there is more........... anyways - I go back in four weeks.  My calendar is loaded with doctor visits, EEG, MRIs.... one day at a time Carm - one day at a time!!!  

All-in-all  = very happy with him so far.  LOVE Moffitt.  I was a volunteer there about 10 years ago..... LOVED it.  I need to "pay it back" so as soon as I am well enough to volunteer again - I am going to give my 4 hours a week.  If you have 4 extra hours in your week - volunteer at Moffitt.  I was in the infusion center with the chemotherapy patients.  I would make sure they were comfortable, give them a fresh warm blanket, a magazine, a cup of broth, a glass of juice or a book/magazine.....or just sit and talk.  I made friends with so many of those that I saw on a weekly basis.  We would laugh, cry and I would even just listen and hold their hand.  It was very rewarding.  

As always - thank you for all of the texts, phone calls, and messages today asking how my appt was.  I so appreciate your concern for my well being.  Thank you for your encouragement and kind words!!