posted
eone of my docottorsaithatthstd that thhat tsurgeonwas sggressive andtookoutmor emtissue than expected around th tumor site anid m noow I am un able t o move my left arm I as some movement in my left lerg bu no notr normalmal moveme is very gradually regaining some movemn ti m myleft sidel llldaysy in the hospital and Ihsd'll get ot day long program of ysical, occupational, andhome andisssed my d daughter tremendously, and Am now forced rc to become right handed and to type with one neneehaandaseddeddyoyou ucan ttellll e I�ve becebome a very poor tytypist.
-------------------- 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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Da_bang80
A few sectors short of an Empire
Member # 528
posted
Translation:
One of my doctors, that surgeon, was aggressive and took out more tissue than expected around the tumour site. And now I am unable to move my left arm I and some movement in my left leg. Gradually regaining some movement in my left side. I was on the acute rehab floor for several days in the hospital and I get a day long program of physical, occupational and home. I am at home and I missed my daughter tremendously, and am now forced to become right handed and type with one hand. You can tell because I am a very poor typist.
I hope I got that reasonably close. I just wanted to help you out by retyping your post so it's a little more readable. I hope you get better soon man.
-------------------- Grant me the serenity to accept the things I cannot change. The courage to change the things I cannot accept. And the wisdom to hide the bodies of all the people I had to kill today because they pissed me off.
posted
They took out more tissue than necessary and crippled your left side? Well they must pay for that, pay like hell. This can't possibly be covered by some clause saying "we might hit something important but if so it's force majeure".
The bang: I think he (k)issed his daughter tremedously when getting home. Or is that non-canon?
Registered: Aug 1999
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posted
He notified the (D)discovery on subspace when he got home.
Jeeez...
Jay, glad you're stil with us and are back at home- I'm hoping your rehab goes smoothly- you'll once again be a better typist than I am! I know it!
"Mr Aggressive Surgeon" needs a big smack- of all the places where extreme caution is warranted, it's your brain! The Hypocratic Oath should include "I wont be a pompass fucko."
The thing is to believe that no matter what, you'll fully recover with persistance- physical therapy has a huge mental therapy element to it. Concentrate on your family and get better...that way you can come get plowed with us (as stated in my prior post).
Besides all that- you can watch the utter downfall of Bushco and the Republican Party!
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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I'm so sorry to hear about the long road that you have ahead of you, but I'm thrilled to hear that you are still with us *hugs* Please take care of youself.
~Liz
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
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posted
Good grief! If that post had come from anyone else, I would have thought they were kidding or exaggerating. I can't imagine what you or your family is going through, but at least that's one more hurdle you're over!
Registered: Jul 2002
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posted
Do as I do, Jay. Obstinate refusal to accept that you will ever have to be permanently less than you were at your peak is what's helped me rebound so quickly after having 12 inches of intestine removed. Which still freaks me a bit. I always prided myself on being reasonably intact, goddammit...
But I start fencing again thie Spring.
--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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posted
Great to hear from you, Jay! Sorry to hear the surgeon had to go and remove so much extra tissue. Glad you got to see your daughter though.
See, this is how we know Jay was super-intelligent. They scooped that much brain out of his noggin and I'll wager he's still not Republican...
Registered: Sep 2000
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Cartman
just made by the Presbyterian Church
Member # 256
posted
I always thought Jay had an excess of brain, but this is not how I imagined he'd get rid of it. B)
Registered: Nov 1999
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Charles Capps
We appreciate your concern. It is noted and stupid.
Member # 9
posted
I'm beginning to have the urge to rename this forum "Flare's Home for Medical Disasters."
Jay, there's nothing I can say that hasn't been said already, and better, by others. If there is anything that we can do for you, don't hesitate to ask.
Registered: Mar 1999
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quote:Originally posted by Cartman: I always thought Jay had an excess of brain, but this is not how I imagined he'd get rid of it. B)
THey're afraid of his ability to "cloud the minds of men", I tells ya!
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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posted
Okay, I'm overdue for an update, so here we are....
I'm taking the MAOI now. I'm on my third dosage increase at this point, with no real change in the headaches, aside from a few days with pain free HOURS in the last week. That could be a fluke, or it could be an indication that the medication is working, finally. It's absolutely impossible to know at this point. That's the problem with this disease - it's always evolving around me, so minor changes like that can easily be misinterpreted early on. We just have to wait and see what happens. My doctor increased the doseage of the med yesterday just to see if the pain-free time would also increase though. We'll see. Both of us do think it's most likely a fluke, as I've been on the drug for well over a month, and the expected "results" should have kicked in much sooner and been much greater even at the dosage I was on before.
The last 3 days I've had no pain-free hours at all.
We took me off of the benzodiazapine for sleep as the "mini-panic attack" side effects became a major issue - my body hit a point where it was going through adrenal malfunction one day for 11 hours straight - cold sweats, elevated bloodpressure, couldn't breathe, etc, etc. It was horrid.
Unfortunately, there are no other sleep specific medications I can take. None. Nada. They're either ineffective for me, in the benzo family, or going to kill me due to MAOI interactions. So I stopped sleeping after that.
Not sleeping began to suck, so we started me on a muscle relaxer at night. It was Zanaflex, which is one of my normal meds in my migraine arsenal. Took it for 3 weeks. 2 weeks in, it stopped working. By week 3, I was done because it was fully ineffective. That's out of my arsenal now for a few months until my tolerance drops again.
So yesterday we put me on a new and MUCH more potent muscle relaxer... it's one of the only ones left that I can take with the MAOI (oh, how I hate this drug interaction list...) Didn't work. Not a bit. I was up all night. Literally. I might have dozed off here and there for a total of 2 hours, but that's a generous estimate.
I still see 6 of everything in the morning, and we're still not sure why that happens. Also, I've developed this frightening habit of blacking out if I get up and move around in the middle of the night. I'm fine if I'm sitting upright, but about 5-10 second after I start to move around, down I go. It's pretty dangerous and scary. Not sure what's causing that, either. It's only a problem from about 12am - 4:30am. I'm fine before and after that. And I've got this strange new visual aura that plagues me in the afternoon each day now - it's a blue pattern through my entire vision field from approximately 2:00-4:30pm every day. Can't figure it out, either. But I work through it.
Other than that, I'm topped out on the MAOI now. I'm topped out on my seizure med, which is still a miracle worker for my phono-phobia and prodrome issues, and I'm not sure what else we can do for sleep.
For actute migraine attacks, everything was taken from me but Percocet, which is a miserable situation because I refuse to take it at work. Sometimes it makes me nauseous, and the new nausea meds (yes, my regular ones interfere with my MAOI, too!) fuck me up horribly. They don't put me to sleep, but I don't stay awake. I'm just in loopy fuck-up land. So no meds at work what-so-ever. Plus, I hate taking pain killers, so I rarely take them. Therefore, I just suffer a lot more now.
As for upcoming treatment excitement, yesterday at my Neuro appointment, my doctor did a few things. One, he put through a referral to send me to ANOTHER sleep specialist - the last one was a joke and told me that if I just waited long enough, I'd start to sleep again. Moron. Two, he put through a referral to send me to the headache clinic at Swedish Medical Center in the Neuroscience Unit. He wants to have another Neuro look at my chart and see if there are more ideas to be seen. So I will be travelling across the state soon. Joy. Three, he wrote a note for work dictating that under NO circumstances are they to fuck with my schedule and try to make it difficult for me to a) go to the doctor, b) sleep until 6am (when I CAN sleep, that is), c) go to bed at my preferred time. This because my work is trying to change everyone's schedule, and it's chaos for someone like me who has 6 specialists and constant lab work to fit into a month. four) He decided it's time to let me start working out again since I'm off the beta-blockers. I'm a mess, even though I keep loosing weight (11 lbs this month alone!) so he's starting me with water aerobics. Then, if I can build up to it, rehab-based yoga, then eventually normal yoga before I can even try any type of normal exercise routine.
It's all the fun I can handle, let me tell you.
So that's the update. Seattle, here I come.
-------------------- "You are anal twattypoo who has ruined my good mood" PsyLiam to TSN May 01,2006.
Registered: Mar 1999
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posted
Geeez....sucks to hear you in such bad shape.
er..."water aerobics" and occasional blackouts dont seems a particularly good combonation.
Have you checked out these guys? There's a lot of info on migranes and possible treatments (most of which I assume yuo've already tried). I keep reading of "I.V. Treatments" for chronic migranes but I've not seen any particulars.
Have you tried contacting experts in other countries for treatment options/new ideas? I only ask because the FDA are such pricks with medical trials in the US, and chronic migranes seem to be an increasing global health issue.
Anyhow, I hope you get more of those "pain free" hours! You're a lot tougher than I am to suffer that crap 24/7.
An aside, have you tried Methadone (sometimes called Methadose) instead of muscle relaxers? It's a very diffrent kind of symptom suppression, and it makes me sleep like a baby for 8-10 hours (I needed this monday after the doc burned my wound's edges with silver to "stimulate growth")
-------------------- Justice inclines her scales so that wisdom comes at the price of suffering. -Aeschylus, Agamemnon
Registered: Aug 2002
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