Dr. Neurosurgeon Part Deux

Tuesday saw another visit with Dr. Neurosurgeon. I got in much quicker this time, and the appointment didn't last long at all. So, the CT was normal (for the most part). I get to resume normal activities as tolerated, and have a repeat MRI and another appointment in February.

It all sounds great, and on several levels it is. I have had, officially, two headache-free days. But only two. And the headache I have right now, while not too intense, is aggravating to say the least. And to still have the spasm headaches yesterday made want to cry...not so much in pain, but in sheer and utter frustration. And, as always, crying makes it worse. I can feel my pulse in my brain.

Dr. Neurosurgeon gave me the okay to fly, and Mexico should be relaxing. I've been trying not to think about what might happen. I guess time will tell...

Not My Fault...

I meandered over to the hospital again today for yet another CT scan (thin slices this time! And the head, orbits and sinuses!) ordered by Dr. Neurosurgeon. So here's the sequence of events:
-Receive order at Dr. Neurosurgeon's office with instructions to schedule the CT appointment then contact the office for them to obtain the insurance approval. Check - received and understood the order!
-Schedule the appointment and cancel the outstanding MRI for my spine (figured I'd keep that one in case Dr. Neurosurgeon ordered another MRI of something...). Give the scheduling office all sorts of information, including the reason for the CT scan (note: foreshadowing). Check!
-Contact the office regarding the insurance approval. Check!
-Make sure the approval is granted - spoke with Dr. Neurosurgeon's office. Check!
-Show up a half hour early for said scan. Check!
-Sit down and talk with the registration employee. Frick!

So here's how the conversation goes:
Me: Good morning (as I hand her my doctor's order for the test, driver's license and insurance card without her asking because I'm that good of a patient). How are you?
Mean Lady: Good morning. You're here for a CT scan of your head?
Me: Yes, ma'am. And orbits and sinuses.
Mean Lady: Okay. And here's your insurance card and your license? And your doctor's order?
Me: Yes.
Mean Lady: (tapping away on her keyboard) And the reason for the CT scan?
Me: I believe it's on the order - they are looking for a CSF leak (falsely assuming her knowledge base).
Mean Lady: Well I don't know what that even means.
Me: They are looking for a leak of spinal fluid.
Mean Lady: (grabs giant book of medical codes and starts flipping furiously) *Mutter Mutter Mutter*
Me: I'm not sure how that's organized, but some search phrases could be cerebral spinal fluid or spinal fluid. The other diagnosis is spontaneous intracranial hypotension.
Mean Lady: Are you sure it's not a leak due to a lumbar puncture?
Me: Yes, I'm sure it's not.
Mean Lady: Well there's no other reason for a spinal fluid leak. I can't believe they didn't write down a number for this reason. See? (thrusting the book at me) There's leaks, and nothing for spinal fluid except for related to a lumbar puncture. What do you see?
Me: *bewildered and furious* Well, my spinal fluid is leaking. Spontaneously. And I haven't had a lumbar puncture. And maybe I'm a little off base here, but I'm guessing if you code it as related to a lumbar puncture, my insurance may not cover it as they haven't paid for me to have a lumbar puncture. And quite frankly, it's not my job to code this for you. I think it's a bit insensitive of you to imply that I have something to do with this. I informed your scheduling department of the reason for the CT when I called in.
Mean Lady: I just get frustrated with the doctor's offices.
Me: Well I'm sorry to hear that. Perhaps you could call the referring physician's office for the code. Or maybe you should focus on bringing this issue to the attention of your superiors who can fix your own scheduling and billing processes, as I gave them the information already, and it's fairly redundant to do so multiple times. I think that might be more productive and provide better quality customer service instead of being inconsiderate to patients who are leaking spinal fluid.
Mean Lady: You're right. I'm sorry. (tapping away on the keyboard again) Here's your paperwork. Please take all of this to the X-Ray desk and they will get you right in.
Me: Thank you.

Ugh. I didn't yell. I didn't swear. I didn't slap her upside the head like I wanted to. But I also wasn't going to sit there and let her be cranky to me. I like to think I took one for the team (the team being anyone who goes to that hospital for x-rays or other outpatient services...), and that Mean Lady will realize that maybe she should be nice to patients, but I'm not that much of an optimist, and really I think I maybe ruined her day just a bit like she almost ruined mine.

So, the saga continues. Up next: another trip to see Dr. Neurosurgeon!

Frick.

Squeezing right eye shut. Headache beginning. So unfair...

Pure Joy!

Pure joy was having an entire day without a single headache. Not a twinge, not noticing squeezing my right eye shut, not a spasm - nothing. To make matters even better, I was without a good night's sleep, and had an early morning at Justin's swim meet. That kid is just fantastic - every time he hugs me I feel like my heart grows just a bit bigger.

And I managed to make it down to Hamtramck for dinner...we made it to the bakery early enough for me to get my angel wings. The pierogies weren't nearly as good as what Baba used to make, but those along with the potato pancakes and giant chalice of Polish beer made it feel like the holiday season.

Well, Hello Dr. Neurosurgeon...

And yesterday was the first of at least three impending trips to the neurosurgeon. Mom & Miss joined in the fun, which was good. Always good to have mom and a Ph.D. in comparative medicine at the doctor's visit.

Verdict? Spontaneous Intracranial Hypotension. Yes, I was leaking spinal fluid. No, we're not sure why. And though I'm a fairly concrete thinker, I'll have to accept that this may not be explained. I have another CT scan coming up, with another MRI in a few months to make sure everything has healed, assuming the headaches continue to heal. For now, I'm supposed to be active but not exert myself. Yeesh - talk about walking a tightrope - will have to do the best I can.

Fortunately, the last three days have been better...down to one or two spasm headaches per day, and the dull aching headache isn't starting until evening. I laughed at lunch today...unabashadly...without thinking and without pain. I was giddy afterwards. It really is the little things in life, sometimes, that make a big difference, as cliche as that sounds.

Thoughts...

Thoughts / dawning revelations I've been having over the past few days:
-I can't believe I have to relearn how to laugh. It's hurt so much to do so, I now feel like a robot when I think something is funny because I can't express it. It's getting better (there's less pain when I laugh), but it's amazing how cruel it is to not be able to laugh...I feel like I've lost a lot of my sparkle.
-Was I really vomiting my own spinal fluid? I'm pretty sure it wasn't mucous / sinus drainage, but if it was CSF, that's just wrong.
-Never been so excited to meet a neurosurgeon.
-Ugh.
-Didn't realize anyone still read this, especially with how little / how sporadic I am with posting. I should've known... Thanks for getting in touch yesterday, Tia. It was more than good to hear your voice. I miss you and I love you.

...And Seconds...

My second (and technically third and fourth) MRI ever was on Friday. We have moved down the brain to the cervical, thoracic and lumbar regions of the spine. An hour and fifteen minutes spent in a white tube with crazy noises and a very uncomfortable position that wasn't to be altered is not something I should complain about by any stretch - I'm lucky to have access, availability and insurance. But this still sucks, and that's all there is to say. We're in search of some kind of tear in the dura that is allowing a leak of cervical spinal fluid. All I know is that there's a bunch of stuff on the initial MRI report that I wish I had no knowledge of, and I hope that whatever news I get on Tuesday is easier to handle than the diagnostic phase has been so far. I can live without panic attacks and feeling like I am slowly but surely losing my grip on reality and my sanity. I can't imagine how the author of the Permanent Headache blog has gone two years with no answers. I think that would quite literally cause me to go insane.

One-Hit Wonder

There have been a lot of firsts for me recently...first CT scan, first time on narcotics (dilaudid, vicodin, toradol), first time of not knowing to the extent that it's driving me a little crazy. I've been a caregiver so often over the years, and I don't begrudge those experiences. I've learned a lot and have been forced to deal with things that at times seemed insurmountable. I know I haven't always handled things well, or the best that I could, and I'm okay with that. Sometimes, it seemed all I could do was try to put one foot in front of the other and plod through while hoping for boredom.

I haven't had to have someone take care of me in a long, long time...years and years, really. I find that I don't like it one little bit. A friend suggested that it's a control issue, and I have to admit that it's partially true. I also don't like the idea of having to be a compliant patient at some point. I know I don't do so well with rules...mostly because I don't like them, and prefer to make up my own. Life's more interesting and makes more sense to me that way.

So, today was my first MRI. It was a piece of cake, really...lie down on a table, get moved in to a weird tube, slap some ear plugs in and try not to move. My conversation with the MRI technician was entertaining:
Tech: Okay, we're going to move you out of the machine to give you the injection of the contrast now.
Me: Okay. I'm pretty sure I can't do much about that right now, hey?
Tech: Not so much. So, do you have good veins?
Me: I have great veins if you're any good at finding them.
Tech: Well, this *is* my first time doing this, and I usually can't hit the broad side of a barn...
Me: (as the tech is palpating...) Oh, there's a nice, meaty vein in my right arm that I think you'll like.
Tech: No shit...it's like a garden hose. I don't even think I need the tourniquet. I guess I should wait for one anyway, but I really think I could hit it without...
Me: I like to live dangerously. I think you should go for it.
Tech: It's Monday morning...I should probably wait.

He hit it on the first try, and left only a small bruise. Not too shabby, really. And now it's time to wait for results.

Horse...THEN Cart...

I was reassured tonight while talking to Mom that everyone has a hard time taking their own well-intended advice. Mine recently to my dear friend to not put the cart before the horse and not freak out until there's something concrete to freak out about are two pieces I should really be taking. But I also know that a very little bit of knowledge can be dangerous at best... So, I say, "Ugh."