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Forget all that! Liz... you've returned. How went the procedure, and when will you have results?
Me, I'm still trying to shake the aftereffects of the antibiotics out of my system. The dapto really threw off my acid-alkaline balance. I'm going in for another CT scan next week, but my first set of cultures was seven days negative, so that's a confirmed sterile. My doc ordered another set after I was off the antibiotics to confirm, but I haven't heard anything yet, and positives usually show up within 24 hours. It's been four days so far and no phone call, so I think the staph infection is indeed gone.
Here's hoping you get equally good (or atleast useful) news, Liz...
--Jonah
-------------------- "That's what I like about these high school girls, I keep getting older, they stay the same age."
--David "Woody" Wooderson, Dazed and Confused
Registered: Feb 2001
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Hawaii's nice. I lived there for about 4 years. I would love go live there again.
-------------------- I'm slightly annoyed at Hobbes' rather rude decision to be much more attractive than me though. That's just rude. - PsyLiam, Oct 27, 2005.
Registered: May 1999
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But you had to leave when Robin Masters finally returned home and sicced the Lads on you, right?
Plus, that jerk Don Bellasario kept killing off all your girlfriends-of-the-week. ...and what was up with that little vietnamese girl? I mean, was she your kid or what?
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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I'll be having, I think, another MRI in 3 months to see if the procedure worked.
-------------------- Great is the guilt of an unnecessary war. ~ohn Adams
Once again the Bush Administration is worse than I had imagined, even though I thought I had already taken account of the fact that the Bush administration is invariably worse than I can imagine. ~Brad DeLong
You're just babbling incoherently. ~C. Montgomery Burns
Registered: Mar 1999
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posted
But you're overall okay now? I mean, you dont have any symptoms or signs that things are getting bad, do you?
I saw my own doctor today and got an earful of resident-babblr about how I need to consider the psychological stress I'm under and how I really need to get into a support group or talk to family or something...
As upsetting was my doc saying he's all oout of ideas, and that I should look into my local area for a hyperbaric chamber (sp?), becuse "that's shown good results with this kind of thing.."
But I can tell he's pulling ideas out of his ass.
AND I'm turning 33 on Tuesday! Great: I'm an old, one legged, girlfriend-less Star Trek geek. (sigh)
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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It was a radiation procedure...the only marks were from how they secured the frame to my head.
Like I said, we'll just have to wait and see.
-------------------- Great is the guilt of an unnecessary war. ~ohn Adams
Once again the Bush Administration is worse than I had imagined, even though I thought I had already taken account of the fact that the Bush administration is invariably worse than I can imagine. ~Brad DeLong
You're just babbling incoherently. ~C. Montgomery Burns
Registered: Mar 1999
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posted
Er, wow. Guy goes away for a while and gets totally upstaged. I've got nothing on that.
-------------------- "I was surprised by the matter-of-factness of Kafka's narration, and the subtle humor present as a result." (Sizer 2005)
Registered: Mar 1999
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Only way to top them is to actually die, and that seems a bit drastic, even for me.
-------------------- "You are a terrible human, Ritten." Magnus "Urgh, you are a sick sick person..." Austin Powers A leek too, pretty much a negi.....
Registered: Sep 2000
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I don't think we've had any regulars around here do that yet. Although, it is kind of hard to tell sometimes whether I'm talking with a real person or a corpse, depending on the conversation.
Registered: Jul 2002
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Well, the results are back from the mayhem that was my spinal tap.
First of all, can I just say that while I'm not a fan of ANYONE using medications or drugs for recreational uses, the anxiety medication that my doctor gave me to tranquilize me before the big LP was some MIGHTY fine stuff. It really made the entire experience (what I remember of it!) much more bearable!
I don't have increased intracranial hypertension. This is both good and bad, depending on how you look at it. The good part of it is that I don't have IIH. Yay! The bad part is that we still don't have any one thing we can peg down as The Thing that is causing my headaches and other medical issues. So that sucks.
Also, my spinal fluid was checked for meningitis and abnormalities that would signify cancers, tumor growth, and other ailments - all of those tests came back normal. Again, this is a good thing in that there's nothing in my body that's slowly killing me that I don't know about, but it's a bad thing because I'm still just this random enigma of daily headaches that medications cannot control.
Aside from that, I managed to be one of the lucky few who after my spinal tap developed a spinal headache. What that meant was that the hole they poked into my spinal cavity didn't close up and heal like it should have, and it leaked cerebral spinal fluid for well over a week. If I sat up, stood up, or moveed around, I would get a headache unlike ANYTHING I can describe to you, and painkillers couldn't even dent this pain. As long as I laid down, the pain was pretty much non-existant. So, I spent most of my time in bed for over a week. Fun, huh? Got a lot of reading done! And a lot of napping.
Current plan of action: We upped my Zonegran (epilepsy medication) to 4x the dosage I started on. This is a maximum dose. It hasn't helped yet, and still isn't helping, but it's causing great weight loss, so the vein female side of me is okay with this. My Neuro also put me on Periactin, with is an antihistimine. Crazy, I know, but apparently for some people it helps. I has NOT helped my migraines yet, but my allergies have been SOOO much better. This makes my Allegra and Allegra-D both look like pussy-drugs! Of course, I'm still on the trazodone (anti-depressant) to help me sleep - this also, theoretically, will help my headaches. Not yet, but I'm sleeping finally. Plus my gyno switched my birth control for a few weeks to see if my headaches changed - I'm not sure if that helped or if it was coincidental, but I DID have a few days that were better. This was short lives, and I also and retaining a lot of water and am irritable. Pisser.
All in all, between my multiple presciptions I'm taking something like 14 regularly scheduled pills a day, and I have 12 prescriptions total right now. It's a grand life.
Oh! And I've started charting! I'm making charts for my doctor of my migraine intensity each day upon waking, and at it's peak, and also the time of day. Yes, I am high tech, and he will now see my Excel mastery in action. Bwahahaha. You've now been updated.
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
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Here, I was hoping one of us would actually have things come together and find the magic bullet. Dang. Mixed news all round, but I'm glad you've been able to have a few nice days. Isn't sleep wonderful?
Not much new at my end. Still rebounding after six weeks on some nasty antibiotics. Energy is coming back, but my stamina is still shot. My appetite is back, but my stomach shrank during those six weeks, and I'm not enjoying trying to get used to eating and drinking again. I'm still almost twenty pounds les than I weighed in April -- which is about thirty-five pounds underweight for me. I hate losing ground.
So what's next, Liz?
--Jonah
-------------------- "That's what I like about these high school girls, I keep getting older, they stay the same age."
--David "Woody" Wooderson, Dazed and Confused
Registered: Feb 2001
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That's why I've begung the charts. I'm hoping that some sort of magic trigger or pattern or something comes of it. So far, nothing, but it's only been about 3 weeks.
The visual disturbances are getting worse, but I'm having a hard time researching them because I don't know what to CALL them.
I'm contemplating going through a barage of serious hormone testing to see what that turns up, but that's going to be tough on my body all around - two months without birth control to start with (the birth control is the only thing regulating my hormones right now...) and then from there, according to my gyno we'd do some major hormone and glucose testing, but she said is very uncomfortable and drawn out, and not always accurate, and kind of a last ditch stop.
I feel like I'm at that point though.
I'm going to talk to my Neuro about it and my PCP when I see them next. My next visit to the gyno is in August, so I'd start it then if I go through with it. My only thing turning me away from it is the fact that it's not very accurate - going through hell and back for mixed results that I can't necessarily trust? Not so sure I like those odds.
As far as on the Neuro front, there's still something like 45 meds left to try on their own, plus we can start combining meds... the problem is, I'm getting more and more into the fringe with every prescription.
I think next we're just going to add a beta-blocker to my regimin and see what happens. I had some temporary positive results from beta-blockers in the past (Inderal/Propranolol) but I also had the bad side effect of blacking out, so I wasn't able to drive the entire time I was taking them. This is a problem for someone with a job, school, and multiple doctors appointments to get to. Before, I wasn't in school and I was on disability, plus I had my boyfriend and 2 roommates to act as my chauffer.... it was easier to not drive. Now it's a bit more difficult. But I will make it work, somehow.
Also, I'm contemplating a request for another MRI, though my last one was only a year and a half ago. I know that statisticly, odds are slim that anyting has changed since then, but I don't like the fact that I keep getting more and more "unclassifiable" symptoms and I can't see what's going on with my brain. If something Very Bad is going on up there, I wanna know!
So we'll see.
I see my neuro again on Monday. Right now though, I'm kinda worn out on the entire thing and feeling like we're just grasping at straws.
Glad to hear that your energy is coming back and you're putting on weight, though I'm sure it is tough gettingused to food again. We're all just a bunch of gimps around here, ya know that? We should rename this place... we can call it Gimps Annonymous ;-)
~Liz
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
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Well...that's it. My doctor is now officially just a source for painkillers. He's said he's all out of ideas and thinks that, while my wound is not any smaller, the fact that, despite it's starting to hurt worse, it not having gotten any larger is "a good sign".
He wants me to look around my area to find a hospital with a Hyperbaric (sp?) chamber. The treatment would be four hours in the chamber- it being filled with pressurized 100% oxygen (just like the Gemini asronauts!) that (supposedly) accelerates wound healing drasticly.
But the treatments call for four to six times each week. Four hours each day. That would mean, treatments first thing in the morning, then working for eight-10 hours, sleep and them doing it all over the next day....
If that's what it takes, I'll do it, but I'm... I dont know...discouraged? Not hopeful? THe sheer lack of enthuasim on my doctor's part is discouraging.
I'm definitely tired of the whole "we've tried everything line of doubletalk from my doctor, and the endless stream of residents that line up to see my leg when I go for an appointment.
Plus, I just took my Chemo and have to work 16 hours tomorrow...so I'm kinda gripey just now.
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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