Speech Pathologist, Here I Come!

I had my first appointment with a speech pathologist (SP) on Monday, January 21. They are to continue once a week on Mondays for about 8 weeks, depending on what I need.

(This is gonna be a long post, with some background, so please bear with me. The directly relevant Speech Pathologist stuff will be in blue font. )

Jan 21 was not too much in the way of therapy, but basic vocal hygiene and anatomy, so I know how it all works (which is very helpful) and how to take care of my voice. There was a student observing, which I said was fine.

She gave me a handy list of hygeine recommendations, and is VERY happy to learn that I don't smoke, rarely drink wine, no coffee, and only tea. For being so sick, I still look after myself in ways that I can, thank you very much.

So over the next weeks, I'm incorporating more of the list recommendations into my life, a few at a time. I set up a humidifier, and reduced the amount of Gatorade powder in my water (it dries you out). I like being able to see the progress I'm making when I can check off on the list "yep doing that".

Here's the kicker: She is the WIFE of my neurodude! She was asking about my medical history, and it came about that she asked who my neurosurgeon was.

(I don't know if he technically is my neurosurgeon anymore since unless my ICP goes south and turns back into hydrocephalus (i.e., something that necessitates an ER visit), I won't have any reason to see him. It was hard enough getting into see him last February when my current dx was confirmed. But he's my neurodude in my book because 1) He diagnosed my current low ICP problem, and 2) he's the one I'd want to be examining me if anything goes wrong. He knows my history, and he saw how the headaches stop dramatically if I squeeze my jugular veins - that trick was his idea. (Don't anyone here ever try that to stop a headache - it would be extremely dangerous for anyone with normal or high ICP.) As he said, he's spent his life trying to lower intracranial pressure, not hike it up.

Unfortunately, he as much as said that day that there's nothing he can do to cure it - any attempt at a surgery is far too risky. As far as he is concerned, I am functional, and there's no need to jeopardize that. Which brings us to the present course of heavy-duty pain management. When I last saw him, he'd said he was going to discus my case with colleagues in pediatric neurosurgery - those guys know more about ICP problems because most cases of hydro happen to kids. But I never heard back from him (that was late February/early March 2007), and I doubt I could get in to see him when his Rottweiller of a nurse was so dead-set against me coming in for a consultation. I barely remember what I did to get in, but it was not polite; it was assertive to the nth degree, and I was so angry I know I must have ruffled some feathers. "Get me in there THIS WEEK, PLEASE!" (this after haggling on the phone with the damned nurse for 30 minutes, who, incidentally, gave me an inaccurate report of what the neurodude said. When I got to see him in person, h had no idea that the nurse had given me the wrong information about my tentative diagnosis, and I made sure he was aware of that. She said ("growled", really) "you are shunt-dependent". What the neurosurgeon told me, with a smile, was "you are shunt-INdependent." Huge difference there, honeybuns. Get it together!!!!!!! ) Whether or not this was deliberate, for the first time since I got this neurosurgeon in 2003, that nurse did not sit in on my appointment. I hope she feels very inadequate. She made a big boo-boo. )

I did mention to the SP that my GP had put me on morphine, and I am still having severe daily headaches. Neurodude never liked narcotics, even when I was in the ICU and suffering horribly after he tied off my shunt. The nurses ignored him and gave me IV morphine. They probably saved my life, because nobody really knew what would happen when a shunt is tied off. Bad things, for instance. So that was why I was in the ICU. If things went south (and with hydrocephalus, they go south in a hurry if they are going to), they could catch it instantly. No hard feelings, really - but yeesh fella, wakey-wakey. Patients under anesthesia don't scream or projectile vomit. Maybe he likes them that way and has no clue how to deal with them when they're conscious.

I hope he at least remembers me if his wife mentions she's working with me. It'd be nice to know that I wasn't losing my mind, and that my case made him think a little more outside the box.

Thanks for taking the time to wade through this. My update posts won't be as long, I hope.