This, my friends, is called coming "Full Circle"

Tuesday, October 21, 2008

Oy. Good thing I didn't get my hopes up. I do have to give the neurologist some credit, she didn't run from the room after 5 minutes like usual, but I also need to give myself some credit because the only reason she didn't is because I peppered her incessantly with questions. She didn't answer 95% of them, but well, I tried.

When I was first diagnosed with chiari malformation, my neurologist, who was grossly undereducated on chiari, sent me to physical therapy because he decided it must have been a problem with my neck muscles. Definitely not from my brain hanging down too low (he had seen the MRI, he just didn't believe in symptomatic chiari). I went, it didn't help, and eventually I found a slightly more educated neurologist and neurosurgeon and they realized that muscular manipulations were not the key to the headaches. And that's how we ended up where we are today.

At this afternoon's apointment I asked about the tethered cord, she said she really didn't know. Her only experience is with those who have had symptoms their whole life (and by the way, should we start a sacral dimple club? I feel like there are enough people to have one).

I asked about increased intracranial pressure and she said that the other chiari patient she's seen who had a recurrence of headaches had very similar symptoms to mine and a lumbar puncture (the best way to check for this) was normal. And therefore, it's low on her list of possibilities. (Because, you know, every patient is exactly the same, therefore one test works for two people!)

I asked about the eye stuff (the nystagmus, the weird dilation when in the worst pain and the most recent shifting of my whole visual field) and she told me to see an eye doctor. Gah.

I asked about the headache clinic and she said that unless I want narcotics its unlikely to be hugely useful. It's better to be followed by a neurologist (which is ironic since she didn't ask me to make a follow up appointment, so I'm not actually being followed by a neurologist).

What she did give me was a prescription for biofeedback physical therapy. Twice a week for 2 months, to teach me how to relax my muscles. Because the only thing I have more of than pain is free time. And also, she and I even discussed that I did not have muscular pain, which is really what biofeedback is best for. Hey look, physical therapy for brain problems. My God, is April 2006. My time machine works!

It genuinely feels like I've been banging my head into a wall for the past month. I am running in circles and getting nowhere.

So tomorrow we seek a second opinion with a different local neurologist (as in call one, I don't actually have one scheduled. Sorry for the confusion). Because I'm not really sure what else I can do.

12 comments:

Becs said...

(From the Other Becs...) I know it's hard. I know there's not enough money and energy is running out - but is there The Best Neurologist In The World out there somewhere?

Call. Email. Petition. Stage a sit-in.

I do not like your snotty little neuro and would come there just to squash her like a bug.

Anonymous said...

Katie,

I lurk here reading your blog all the time and have posted once or twice in the past. I have a friend with a daughter who has a tethered spinal cord. If you would like I can hook her up to you and she might have some insight that may help. Please let me know if you would like to speak to her and I can get her to your blog.

Hoping you find the answers you need.

Laurie in NJ
LaurHar68@aol.com

Ness said...

I figured your present neuro would put on her professional Dr. coat and give you some real help---NOT!

Saw that one coming as well as you did but hope springs eternal...

Yeah on the 2nd opinion. If this one is also useless, I'm gonna demand to see their shingles to see if they went to the same medical school.

You asked some intelligent and spot-on questions and she failed you miserably.

The Floydster said...

Good for you for standing up for yourself with the questions. Here's hoping the next neuro has more experience with what you suffer from and will have answers.

Flea said...

Yay! A second opinion! I can't WAIT to hear what this neurologist says! Sorry, Katie. How horribly frustrating. Time to kick back with Dr. Horrible maybe?

You did really well, BTW. Don't let an inept doc keep you from being just as thorough tomorrow.

Lanny said...

Glad you've got a second opinion tomorrow. Fingers crossed that this one has more answers.

nola said...

Yeah, Oy. rrrr.

stacey said...

okay that really really sucks. hopefully 2nd opinion will be much much helpful.

Overflowing Brain said...

Apparently I worded this badly- I'm going to be calling about a 2nd opinion tomorrow. I don't actually have one yet.

My bad.

justlori2day said...

I had such great hopes for you today. I am sad, yet not surprised, that it went the same as the last bazillion appointments!

GL with the call to get a second opinion! Hopefully it goes better than the past few idiots!

My offer still stands for a trip to Mayo! :)

Kristine said...

I am seriously just in shock by the crap treatment you are getting! I'm glad you are getting a second opinion.

I'm just shaking my head here, this is so crazy. I'm so sorry!

Chiari MAMA said...

no. 1 if you have been diax already you should see a Neurosurgeon not a Neruologist. you are just wasting time and money . See a Neurosurgeon . email me if you want further .