Not false hope

Monday, November 24, 2008

Today was the new neurologist appointment.  The second opinion appointment.  The extremely long awaited appointment.  The I-was-so-nervous-I-had-dreams-about-showing-up-naked appointment.  Sorry, I'm done now.

I showed up 10 minutes late because I forgot to grab my MRIs this morning and realized that it would be fairly worthless to see a neurologist without any imaging.  After breaking a multitude of driving laws (that's not including my expired tags (I have the new ones, I just keep forgetting to put them on) or total lack of a brake tag), I got from work, to my house, to the doctor in under 30 minutes.  Yes, I am impressed with myself.

I waited very briefly (one of the benefits of arriving late?), and was taken back.  And get this y'all, he did a neurological exam.  Holy shit.  Who knew neurologists did this?  My fired former neurologist didn't, um, like ever.  Everything was essentially fine (still have the upward Babinski, still have no grip strength in my left hand) so we talked about the headaches for a while.  He indicated that having headaches for 9 weeks is unacceptable.  Who knew?  

He looked at my MRIs himself (again, practically revolutionary compared to the former neuro) and said that the one thing he observed is that unlike a lot of people who have the chiari surgery, my cerebellar tonsils haven't lifted up at all.  It's not the main goal of the surgery, but it happens in a number of successful surgeries and didn't in my case.  

I also have a large accumulation of CSF in the back of my head, which may or may not be why my tonsils haven't retracted, and which isn't completely abnormal, just something to watch.  He's ordering all my previous MRIs to compare and even my EMG test results because also, the fact that I still have no grip in my left hand is also of apparent concern.  Again, I say, who knew?

So what we're doing is trying another prophylactic headache medication called Neurontin, similar to Topamax in the mechanism of action and the way you taper up, but of which the graduated dose is so large it could tranquilize a seizing elephant.  It is also supposed to have far fewer side effects, which is good because oddly, I don't want to have to buy a new car battery for leaving my headlights on 400 days in a row.  He also prescribed Fioricet, which is a mix of Tylenol, caffeine and a tranquilizer (hello!), and which is supposedly wonderful.

I am going back to see him in January to see how things are going, but have been warned that the Neurontin takes a while to work and to not expect any miracles.  He's going to track down all my records and see if he can't come up with some sort of reasonable differential diagnosis for why I've been in pain for 9 weeks.

I know I swore I wouldn't get my hopes up about doctor's appointments anymore, as it has only led to great disappointments, but well, I'm hopeful.  And I can honestly say that in the last 9 weeks, moments of hope have been few and far between.  

Here's to hoping for more hope.


Lipstick Jungle said...

Wait, what? An examination? No way... they still do those? He must be old fashioned or something... Thank God!!!

Sounds like that new drug is heaven, and I want some!!! Maybe it would help my kidney/back pain no? hehehe!

I am so glad to hear (yes, I have high hopes) that someone cares enough to really research!

Good luck!!!

Daisy, Just Daisy said...

Woot! Three cheers for the standard of care!!!!

Anonymous said...

And my doctor called back tonight at 8:45, on her personal cell phone! Something strange is going on today... but I'll take it! :)

Anna in IL

the queen said...

Well good! About time for those doctors. Mom loved Neurontin, in that it made her sleep very soundly.

Flea said...

Oh Katie! I'm practically crying! Tears of joy for you, my friend! There is a God! Oh wow! HOORAH!

Becs said...

I don't think you've gotten your hopes up - I think you may finally have encountered a competent and responsible neurologist.

That it took so long is pretty effing scary, but things look brighter than they have in a while.


Becs said...

Fioricet is wonderful. I suffer from migraines and that is the only thing that will give me relief when I have a full blown migraine. I am very sensitive to side effects and I had NONE on that one. I hope it helps you too!

lace1070 said...

hooooray! Finally found a neurologist that uses his brain ~ lol ~ keep me posted ~ Lace

Anonymous said...

I used to take fiorsit (however you spell it) for migraine and it does work. Good luck!

The Floydster said...

Yea oh yea oh yea!!! I'm so glad for you! It's about time!He sounds wonderful, and I'm glad you found him. Here's to hope and healing and NO MORE STINKIN' HEADACHE!!!

Anonymous said...

Sweet Jesus, it's a miracle. You found a REAL doctor!!! Woot!!!! All the best, sweetie!

Anonymous said...

And btw, how are you 'celebrating' your brain-op's first birthday? Is there a reason?
I hope you are well.