Medical stuff

Monday, October 20, 2008

So I'm just cutting to the chase. I do have a good story about how apparently my entire administration thinks my name is Amy, but I'll save that for another day when I need it.

Frankly, my head hurts a lot today.

I'm trying to come up with a list of questions for my neurologist tomorrow (aside from, can you refer me to the headache clinic or another neurologist who doesn't suck), but so far all I've been able to come up with is "how much does a lobotomy cost?" and that seems like it'll get me admitted to the hospital psych wing (ha, as if they still had one). But seriously.

There are many things I want to ask, but I don't want to seem like an internet research psycho. Though perhaps I am.

I have virtually every symptom of a problem called "Occult Tethered Cord" which is essentially a very mild form of spina bifida that many chiari patients have and which is often responsible for a lack of resolution of symptoms after decompression. The tethered cord causes the brain to continue to be pulled down (via the spinal cord), even when there's enough room.

The one sign I lacked, which is a physical marker on my lower spine, I have come to find out that I do have. Did you know it's hard to know whether you have a dimple on your lower back? And by lower back I really mean right above your butt crack? Because it is. Ah the joys of marriage. But how do I ask the doctor about this. Um, hi, so I found out that I have a dimple on my ass, wanna see it? Do you think that my spinal cord might be tethered? There's no way to broach that topic without sounding like a complete loon, which perhaps I need to stop worrying about so much.

I also want to ask about increased intracranial pressure because in a lot of chiari patients it doesn't show up on MRIs, but again, I could only seem more like an internet researcher if I actually brought my computer with me. I just don't know.

I want her to show me the MRI from February where I had the CSF leak and show me where it was and how it has resolved. I want her to prove to me that my duraplasty isn't leaking again. I want to know why my vision has gotten so very weird lately that I've had to pull my car over while driving so as to avoid accidents. I want answers to every question, but I also don't want to go in with a laundry list of complaints because I feel like I will only be causing myself harm to seem too organized or too prepared.

Where's the line between being your own advocate and being your own over-exaggerator? Or between informing yourself and becoming a raging hypochondriac?

If I had to answer, I'd say that pain of 30 days of headaches helps tip the scales in my favor, but my doctor has yet to see it that way. So I'm going back to the lobotomy idea. I think it's a solid one.


Daisy, Just Daisy said...

I sent you an email. It is, of course, as awesome as you are.

Anonymous said...

I haven't had a chance to read your blog in a few weeks. I was hoping you would have SOME relief by now. But I knew by the tweets that wasn't so. I wish the Access to Care thing was still going on, you could get acupuncture for free for several sessions. Although, I don't know, it may not help. I do totally think you need to go in with this questions and not worry about asking, you need to know what is going on and you need to find out what is going on. Your doctor has to understand if she doesn't bitch slap her.

The Floydster said...

Who cares what the doctor thinks? If she's going to get all defensive then maybe that's a sign of her thinking that maybe, just maybe, she could be WRONG!!! You have every right to investigate on your own and then ask her questions. I'm sending my best prayers and thoughts your way for tomorrow's appointment.

~~Silk said...

"causing myself harm to seem too organized or too prepared"? Absolutely NOT! Most good doctors appreciate a patient's organization and preparation. It allows them to feel more effective. Go in with a list, and insist on checking off every item on the list. If you ask "Is it possible that..." and she answers "No", insist on the reason for the no, the "because" behind the no. If she asks where you got this information, tell her it's from talking with others with similar conditions, which you have done because you felt you needed to take control of your life.

Now go kick some butt, Girl!

Anonymous said...

You just need to be honest with your doc. "Look, I am married to a med student, and am a worrier by birth. So this is probably me over-analyzing and trying to make sense of things, but nonetheless, I have some questions that may be silly but I need to ask so that at a minimum I can resolve them and put them on a shelf.... Or find we are on a new path. So, with that disclaimer, here goes..."

Or something close. What do you care what SHE THINKS? She's dead to you! Get what you can from her! She's very well compensated for these visits. Get that money's worth.

(See how I posted that comment and didn't freak out abt the cord issue? But I am kinda freaked out. So I know you are too. Please show her your ass! Write your questions down and ask every last one.)

Ali said...

I don't usually comment but thought I would just say that I think you're remarkable to be still holding it together as well as you are. Can you not have your husband come to the neuro appointment with you and present the list as though it is his?
That way you can still make her understand the difficulty this is causing you whilst you present all the stuff you NEED to. I mean that. You have to make sure that doc listens and that you say all the stuff you have to say.

Flea said...

Katie, take your entire list of questions, print outs, research. A good doctor appreciates that. Approach it from the vantage of someone who's in tremendous pain and desperate to find an answer. This is not about the neurologist. This is about Katie and Katie's pain and what Katie already knows about herself, having lived with herself over two decades. You're an expert on YOU. Listen to NOLA. :)

Becs said...

You need to ask the doctor EVERY single one of your questions. You shouldn't have to worry about what she will think. You already don't like her anyway. And just think about how much better it will make you feel. Maybe that is the answer! You have to stand up for yourself. I can't even count the number of stories I have heard from people about how the doctors kept telling them nothing was wrong with them and they had to keep insisting until something was found. Don't rely on the doctor's experience and knowledge. Unfortunately, that is not enough sometimes. You know your own body better than anyone, including doctors.

Lipstick Jungle said...

My suggestion...

"Because everyone thinks there is nothing wrong with me, and nothing narcotic is working, I have been driven to the internet. With my husband at my side, agreeing with symptoms, he decided to check my ass crack for a dimple, and low and behold (no pun intended) he found one. Teamed with my symptoms and medical history, it only seems logical that you send me to a butt crack specialist, or consider maybe, checking into Tethered Cord for me".

I kept the f bomb out because you said you were afraid you would appear a bully.


the queen said...

No way! I have a simple sacral dimple too. Only the best people have them.

Becs said...

(From The Other Becs) -
What Silk said. I am but a stranger giving an anonymous opinion, but I say pursue the tethered cord business. You may not have the fuzzy patch on the back (which I do which is way TMI), but not everybody has the same symptoms. ASK. DEMAND. It's your life, your body, your happiness. Can I volunteer Queen M and Silk to join me in Nola as your posse to go to the neuro? We can take her.

Kristine said...

Damn, I wish I had read this before your appointment. Can your husband go with you to your appointments? I think it is always best to have someone else there with you.

And who cares if you seem too researche! This is your life and damn it you shouldn't have to be in pain like this.

Don't forget she works for you! You ask her every question you have and don't settle for answers you don't like.

I'm so mad for you! Want me to come down and go to your appointmen with you?