Here I go trying to get this silly thing 'fixed'

General
1

Hiya gang,

Am feeling all sortsa empowered today and ran across this fine site in the course of idle reading. I have finally in the last month come to terms with the reality that i DO have an AVM that in fact DOES need to be treated.

I have been the very definition of a bad patient for roughly the last 8yrs or so. Ignored my Neurologist, skipped my blood tests, half-heartedly took my meds, and forgot my appointments. Long work hours, little sleep, and no respect for the needs of the corporeal.

I was 'diagnosed' after a pretty severe T-C episode that left me in the hospital for a while. Status Epilepticus, and I wasn't found for a while. Yuk. Went into complete denial- tossed the Dilantin into the trash on the way out of the hospital, and ignored the issue until the next major blowout seizure. I was pretty beat up by that next one (a week or two of coma time) and i *think* i managed a bit of bleeding. I forget. Status again.

Started taking my Dilantin, hated the side effects and grudgingly switched to Tegretol. Which sucked too, but i was less grouchy. I wasn't 100% on taking my meds- i managed to take 'em most of the time...until yet another blowout seizure.

If you are sensing a theme, well, yeah. Another big Status blowout, so i switched to Lamictal and continued my lack of acceptance. Until now.

A few minor seizures over the last couple years, but I have had two breakthrough seizures since Sep 2010.

Just got out of the hospital last thursday (dec 17, 2010) after going Status AGAIN. Three days in the hospital. Whee.

I met an INCREDIBLE woman in Nov 2010, realized that I wasn't doing myself any favors with my approach to my condition, and that it was irresponsible to treat myself and those around me with such disregard.

It also made me aware that I haven't been emotionally at the top of my game ( i hesitate to use the term 'depression', but thats more or less what it is) for some time. A big 'ol life-changing event will do that for you.

Sooooo here I am. I scheduled an appointment on 01/05/2011, and can't wait to start down whatever path to remediation it takes me!

Wahooo! Can't wait. First off, I want to stabilize the seizures, then address the 'depression', then look at the long term solutions.

*hug* Thanks for being here gang. I suspect I am gonna need some support, and it would be good to share anything i can give....

2

Rob you got yourself where you are supposed to be and long way round or not ...good work Happy you made it .

It is amazing what a positive affect an incredible woman can make . You may owe her a thank you .

You have a way with words that despite my best efforts not to ...I laughed a bit . That is a gift to be able to present ones self with blatant honesty and wit combined . You may have come apon a few of us while you were visiting denial ....seems many travel there for a time somewhere between " something is wrong here ./I have a WHAT ? " and treatment . Some even revisit for a bit every now and then as a respite of sorts .

You read as a determined man with a plan and I hope you have the smoothest sailings through these stormy waters and find the best possible means to the best possible result(s) .

Be good to you . Take care of you .

3

Welcome Rob. Interesting story for sure! Wow. You have been thru so much and I’m glad you are going to get some help one step at a time and one day at a time. You sound really in touch with ‘who you are’ and I’m glad you have someone special in your life. Good luck and keep us posted with how you do with your plan. I hope you find this site as helpful as we all have.

4

Lol. Thanks for the kind words, marianne; it is supposed to be funny- anything truly true should probably have an element of humor and absurdity. Its ALL strangely funny.

Determined and with a plan? Lordy, no, but I just gotta stick with it. Up till now, i have just been trying to treat the seizures, make the whole thing just go away. If i am not thrashing about on the floor in a pool of my own urine, then everything must be ok, right? Treat the cause, not the symptoms. *sigh* It's tough being dumb.

In all seriousness, that's the major reason i am here. Definitely feeling like there are non-trivial cognitive effects from the seizures; more or less not coming out 100% the same for well, permanently.

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That's a question for another thread- What have you all experienced to be changes in your persona and patterns of thought? Day-to-day? Long-term? How do you yourself perceive the changes from your perspective versus evidence-in-the-real-world. ex. "I feel perfectly myself" as I get lost on the way home..."Oh! i like bananas!", on seeing the bananas on the counter i had purchased pre-episode.

(See, i have this secret theory that us brain-types have a unique understanding of cognition in general, and a certain insight into our own personalities as we watch them change from within. It makes us better than the Squares of course.)

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5

Welcome Rob, to our little corner of the world.

From the onset, it sounded as if you were the poster boy for bad behavior--maybe you were a "problem Patient". Read the book (or listen on CD like I did this week) by Robin Cook called CRISIS.

Depression or your word for it is usually involved when you get a life-altering event such as an AVM. We found a great counselor who worked with Chari first, then me, and both kids (ages 10 and 12) at the time. He really helped us all work through and process what was going on. Most people in youth or middle age don't usually have to face their own mortality for a long time--and stuff like an AVM slams it home.

As for controlling seizure the best you can, first (and foremost): TAKE YOUR MEDS. Our Drs emphasized: Don't get overly tired, Don't skip meals, and Don't drink to excess. That should be your mantra as well.

Hope this helps and let us know how things go.

Ron, KS

6

Perfect advice, Ron. The best advice that could be given, in fact. I have been struggling the last few years to grow beyond the habits of my profession/obsession and sleep more regularly, eat more frequently, and religiously take my meds, rather than the somewhat blase approach to ensuring i have any of those. *shrug* i am tryin'. Quit my job and went to work for a non-profit in N. California. Turned out to be reaaaallly non-profit. Back to stalking the halls of corp america...

Counseling woulda been/could still be a good idea. I feel like i kinda have my head wrapped around a lot of it for now, but it took me the better part of a decade and errrrm, i imagine a few IQ points to figger it out. I certainly imagine that a counselor as helpful as yours would have shortcut that process. Problem patient? Historically I just flee the hospital as soon as humanly able, never to return. Easy-peasy, poster-style.

Things are gonna change though; as i move through this next stage of actually taking it seriously i may wanna talk with someone- like you said, it worked great to help process everything.

Hey, I said I met an amazing woman, not that there was someone special in my life. :-)

kidding. she seems to be sticking around so far, although she doesn't seem to know what to think about it all. Its no secret- I have been all sortsa post ictal in front of her, and am waaaay past the point of being embarrassed..."awww man, i peed on myself again?! least its almost dry now.".Its going to be interesting to watch her reaction to it all as it becomes clear to the both of us how scrambled my brain truly is..What a bum deal for her. tee-hee.

For the record, i am absolutely amazed by all of you who do their best to take this stuff seriously, and have had the strength to address each of the many facets- emotional,psychological, familial- as they crop up. Its pretty dang righteous.

Ignoring things as i have is far too easy, but it takes less time, overall.

7

Rob,

I absolutely love your sense of humor. I think that when presented with something potentially serious, humor makes a big difference. I didn't have the opportunity to face this with that sense of humor as I was comatose for most of it, but now that I am coherent (mostly) I find laughing to be the best therapy for me. So, thanks form making me laugh!

Now that you are ready to take this and perhaps yourself a little more seriously, I do hope you remember to laugh. I remember just laughing at the pure absurdity of all that had happened to me. How I went from being this super woman type person to not being able to wipe my own bum in a matter of weeks was strangely amusing to me!

Please keep up posted on what the plan is for treatment. In the meantime, do take your meds and let us know if you have any questions.


rob (reb) beatty said:

Perfect advice, Ron. The best advice that could be given, in fact. I have been struggling the last few years to grow beyond the habits of my profession/obsession and sleep more regularly, eat more frequently, and religiously take my meds, rather than the somewhat blase approach to ensuring i have any of those. *shrug* i am tryin'. Quit my job and went to work for a non-profit in N. California. Turned out to be reaaaallly non-profit. Back to stalking the halls of corp america...

Counseling woulda been/could still be a good idea. I feel like i kinda have my head wrapped around a lot of it for now, but it took me the better part of a decade and errrrm, i imagine a few IQ points to figger it out. I certainly imagine that a counselor as helpful as yours would have shortcut that process. Problem patient? Historically I just flee the hospital as soon as humanly able, never to return. Easy-peasy, poster-style.

Things are gonna change though; as i move through this next stage of actually taking it seriously i may wanna talk with someone- like you said, it worked great to help process everything.

Hey, I said I met an amazing woman, not that there was someone special in my life. :-)

kidding. she seems to be sticking around so far, although she doesn't seem to know what to think about it all. Its no secret- I have been all sortsa post ictal in front of her, and am waaaay past the point of being embarrassed..."awww man, i peed on myself again?! least its almost dry now.".Its going to be interesting to watch her reaction to it all as it becomes clear to the both of us how scrambled my brain truly is..What a bum deal for her. tee-hee.

For the record, i am absolutely amazed by all of you who do their best to take this stuff seriously, and have had the strength to address each of the many facets- emotional,psychological, familial- as they crop up. Its pretty dang righteous.

Ignoring things as i have is far too easy, but it takes less time, overall.

8

Hey Rob,

Welcome to the site, and to the club (the club no one wants to belong to).

Glad you've decided to pursue treatment. At the very least maybe you'll get rid of the seizures, at most, it could possibly save your life. I presume that by now, in your reading, you've discovered these things can do a tremendous amount of damage to us, the worst being death. Not to be a smart a$$, but these things really are not to be ignored.

If you're able to have treatment for your AVM you're already a lot better off than those who don't have any treatment options available to them.

Hope you get good news at your appt. next week. Oh, and GO to it! lol.

You'll find tons of good info. at this site, and the people are the best anywhere. Hope to see you around more.

Tori

9

Hee. Glad i could generate a laff or two.

I won't ditch the humor- this is about as un-comical as i get. The seizures seem to bake the grouchy bits out of me; i get down, but the sheer absurdity of it all kinda takes over. I think its more than a bit funny to find ME wobbling around confused and absent-minded..Heck, I even like the new found obsession with pink i picked up after last Dec's Status episode.

Will keep everyone apprised I am sure. :-)

10

Good luck today

11

thanks sarah!

Weeeeeelll, things didn't go so good. The neurologist got paged and left exactly at my scheduled appt.

:-(

We'll see when they can get me in again, i guess.

12

that sounds about par for the course in the medical world. I just had an appointment rescheduled twice for a non-avm problem. Third time is the charm.

rob (reb) beatty said:

thanks sarah!

Weeeeeelll, things didn't go so good. The neurologist got paged and left exactly at my scheduled appt.

:-(

We'll see when they can get me in again, i guess.

13

Hope your appointment went well. Life is precious and worth the effort of keeping as healthy as you can be. I understand the "bad patient" thing...while I was in the hospital after emergency brain surgery, I pulled out my respirator, brain plug (that was yucky), IV and lung tube. They couldn't restrain me enough to keep me safe. Since my name is "Kat", my husband teases me by calling me "Bad Kitty" when I misbehave. I misbehaved a lot in the hospital. But since I don't remember anything, I claim innocence. Besides, a little "spunk" is good when fighting something like an AVM.

Keep in good spirits and be ready for the fight. Life is worth fighting for. I wish you the very best. I never had seizures, but I had to learn everything from swallowing to talking to walking, etc since The end of April. Yes, it's a pain in the neck, but worth the effort.

14

Hahaha. Thought I was the only one to fight like that! Jerked out my ventilator tube, neck IV, and (yuk) catheter.

Just got done with the appt. Came away with an upped dosage of lamictal, an anti-depressant, a scheduled sleep lab, and yet another MRI.

Not a bad start I suppose.

:slight_smile:

15

Hi Rob,
Thanks so much for your outlook. It’s hard to keep moving forward until you get on the bus (so to speak).
Don’t be embarassed about depression…that can be depressing (lol!). Seriously though, who wouldn’t be depressed with the effects of an AVM on our lives? The getting through it part is not fun, but we are going to be strong and appreciate the smallest things at th end of it!
It’s the 7th today; I hope your appointment went well. Keep smiling!
Gisele

16

Weeeeeellll, poo.

Doctor's appt went like krap- new doc said that "...there was no sign of anything, and we should treat just your seizures, which you are likely to never be rid of..." Gave me a prescription for 10mg of Lexapro, and upped my Lamictal 50mg.

B.S. I ain't buying it.

I was reaaaaally lucky and managed to schedule a quick appointment to see my *old* neurologist and things went a LOT better. Despite my previous apathy, he revisited the new MRI/A (no contrast) and said that i had two AVMs....that apparently already ruptured and dumped some blood into my poor 'ol head. One in left temporal lobe and the other "deep in the white matter". Fortunately, "the AVMs aren't too big, but still have the potential for further difficulties". Well, thats reassuring. :-)

Course of treatment? "no surgery, wait and see". Now i remember why i became so disenchanted with seeking treatment the first time around...Still-its kinda funny that it came to that. Treatment = no-treatment. Does that count? heheh.

First neurologist scheduled a sleep study (MSLT) for me- tonight/tomorrow. Kinda exciting- can't wait to see the data, although I am not sure how relevant it will be. In any case, its doing *something* versus doing nothing.

*grin* thanks for the support, everybody!