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Author Topic: Post GK  (Read 10133 times)

Gayle

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Post GK
« on: April 14, 2006, 07:30:01 pm »
Hi,
Just wondering if anyone out there is or has experienced what I have.
I'm almost 3 months post GK, and still have constant dizziness.
Have not been able to return to work or drive a car!!  My Dr. is just chalking it up to
I'm in the 2% that don't go well !!!
Gayle
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ppearl214

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Re: Post GK
« Reply #1 on: April 14, 2006, 07:40:41 pm »
Hi Gayle and welcome.... I did a little digging here in the forums and found this link that maybe will help with some answers you seek.

http://anausa.org/forum/index.php?topic=341.0

Some other GK posters here on the site note their Post GK symptoms and maybe a good reference point to start. Hope it helps.

Phyllis
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Gayle

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Re: Post GK
« Reply #2 on: April 14, 2006, 08:21:05 pm »
Phyllis,
Thanks for you're info--it was very helpful, and it's always a little reassuring
to know that you are not the only one out there experiencing these things!!
Gayle
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Kilroy1976

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Re: Post GK
« Reply #3 on: April 15, 2006, 09:55:12 am »
The first symptom of my AN was dizziness. It got worse almost immediately after radiation, but subsided within a few weeks. Recently it has flared up into full-blown vertigo. Off and on, all day long, it's like having the bed spins without the pleasure of getting rip-roaring drunk first (or being in bed  :P). I'm usually ok driving, even if it gets a bit scary when the vertigo hits while I'm on the road, but don't get me anywhere near a passenger seat. More than a mile or two of riding and there's a real danger that I'll toss my cookies.

I have some hope that it'll go away soon though. Since radiosurgery, I've had one symptom after another, but aside from the tinnitus they never seem to last more than a few weeks. Hopefully yours will get better as well; three months post-procedure isn't that long.
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Gayle

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Re: Post GK
« Reply #4 on: April 15, 2006, 10:29:40 am »
Thanks for the input!
I know dizziness can be a part of recovery.
And I know 3 months (even though it seems more like 3 years!), isn't that long,
does anyone have suggestions as to whether I should try to push myself a lot more, or lay low and give my brain more time to adjust?? I have been wearing that patch behind the ear, and have been taking some valium too.  Have tried lots of things, none of which works!!!
Gayle
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Gayle

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Re: Post GK
« Reply #5 on: April 15, 2006, 01:14:38 pm »
Kilroy1976
that's exactly how I've been describing my dizziness---like having the spins without having a single drink!!!
What were some of your other symptoms you've had, that you mentioned one thing afer another since radiation???
I have a 1.5 cm AN on right side, and did GK on Jan 31/06, and also seem to have one thing after another!
Gayle
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Kilroy1976

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Re: Post GK
« Reply #6 on: April 17, 2006, 06:56:45 am »
It would probably be best to do as much as you can without hurting yourself. I think any activity that requires balance and coordination, even something as simple as walking, will help your brain figure out which way is up. Of course, you'd be taking the advice of someone that hasn't gotten their own vertigo under control, so...

I've just had the usual problems... Headache, fatigue, dizziness, ear ache, facial pain... It seems that I've forgotten most of it already. They come and go very quickly sometimes, and I haven't been taking notes.
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ppearl214

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Re: Post GK
« Reply #7 on: April 17, 2006, 10:30:21 am »
running into the same as you (Gayle and Kilroy) almost 2 weeks post CK treatment. I'm finding the dizziness is worse at night... do you all find that any of the symptoms (dizziness, balance, tinnitus) are most prevelent during one part of the day vs. another? I've read some here about the tinnitus being worse at night but the other symptoms, just curious. To try to walk the dog before bedtime is really quite challenging for me now.

Phyl
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Gayle

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Re: Post GK
« Reply #8 on: April 17, 2006, 11:06:14 am »
Phyl,
I'm trying to keep a journal to see if there are any patterns or consistencies, but so far haven't found any----some days I'm better in the morning & some in the afternoon or evening!  Probably part of why it's worse in the evening, is you're worn out from the day!  And I'm sure you have the same as I -- good days & not so good days!!  I have 3 Dr. apts this week, so will keep you posted if I get any "new revelations"!!  Did you have any dizziness before procedure??  What meds are you on???
Gayle
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ppearl214

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Re: Post GK
« Reply #9 on: April 18, 2006, 08:24:42 am »
HI Gayle and thanks!  Please let me know what the drs say this week. I'd be curious.

No dizziness pre-treatment and has been rearing its ugly face this past week.  Balance was issue pre-treatment (in line also with my Chiari 1 Malformation, so I can't tell which condition was throwing it off) but it has worsened since treatment. I just tell everyone my cane is a fashion statement! :)

Meds on now are Decadron but in taper mode now for another week, then done. I've had severe reactions to meds the past couple of weeks but the docs and such knew of my sensitivities (not allergies, per se, but sensitivities).  But, hanging tough with it.

If you get any new "revelations", oh, please... do share... I'm taking notes as well.

Hang in there!
Phyl
« Last Edit: April 18, 2006, 08:39:11 am by ppearl214 »
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john twoffer

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Re: Post GK
« Reply #10 on: April 25, 2006, 03:41:20 pm »
Look up the brain port at Florida Institute for human and machine cognition, which is supposed to be a new treatment for vertigo.
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okiesandy

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Re: Post GK
« Reply #11 on: April 26, 2006, 11:29:59 am »
I had CK starting Jan 5, 2006.  I am nearly 4 months post radiation. One thing I was shown by an accident victum is to quit looking down when you walk. This lady is the wife of a co-worker who sustained very severe head injuries a few years back. She went to several theraphy clinics and could only get so far in her recovery. She taught me to wear a foam neck brace when driving so that my eyes could track better and when my head was turning it is level. The biggest thing is when walking to look at the horizon and not at your feet or down. I practice this all of the time and my balance and tilting feeling is much better.

This lady learned this from a ballet instructor of all things. I always had the feeling of the beginnings of motion sickness. Our bodies are adjusting to something moving around on our balance nerve. Our eyes take over a lot of our balance function. Looking down because our balance is bad could be some of the dizzy feeling.  This is not a cure, it just helps me with the crazy feeling. I went to the ear doctor Monday and he noticed a big change in my rotational balance. I have been doing this every day for three weeks. I also notice when I wear my glasses and not my contacts my balance and dizzy feeling are worse.

Sandy
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Kilroy1976

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Re: Post GK
« Reply #12 on: April 26, 2006, 12:43:22 pm »
Ok, I have something semi-useful for a change. One cheap and easy thing to try is Dramamine or meclizine (Antivert). It hardly makes a dent in my vertigo, but I can tell that it helps ever so slightly. And if it doesn't work for you, you're only out a few dollars. ;)
« Last Edit: April 27, 2006, 01:06:15 pm by Kilroy1976 »
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minnkris

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Re: Post GK
« Reply #13 on: April 27, 2006, 12:24:46 pm »
Full blown vertigo was one of my first symptoms as well. After a week and a half and lots of meds (steroids, antibiotics, etc), it tapered off dramatically. After about a month, I started driving again (I practiced short drives near my house early in the morning).  This happened last May (wow, almost a year now) and I had my GK last August. By then, I just felt the usual balance issues and that has not changed. In fact I would say I'm sort of at a platue (?). Anyway, I have just learned to walk with my head straight forward, be careful moving from shade to sun, don't walk on the moving sidewalks (nausea!) etc.

However, I had a really weird experience last Sat. I was driving and stopped in the left turn lane (my an is left side) waiting for my turn arrow. I turned my head to the right and was watching a vehicle pulling a trailer with a Seado on it slowly. Suddenly, I felt like the left side of my car was sinking! I immediately thought "2 flat tires"! and then realized it wasn't the car, it was me sinking!! Needless to say I freaked out. But the sensation lasted only a few seconds, but it was so dramatic, it really frightened me. So anyway, the other night I'm driving home from work, and I'm stopped in the left turn lane waiting for my arrow (oh oh where is this story going?) and foolishly, I'm watching the traffic go by in the right lanes, when I suddenly feel kinda dizzy.  Well short story long, I've learned another lesson. :)

Anyway, I feel for you Gayle and I hope the dizziness gets better soon.
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8mm x 6mm AN left side
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john twoffer

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Re: Post GK
« Reply #14 on: May 16, 2006, 11:14:02 am »
Who did your GK? I don't want to go to any facility that did GK and had dizzyness result. I think it may be due to physician error or a bad machine. Please people, if you have a bad result let us know who or where it was done. Thanks.

Quote from: Gayle on April 14, 2006, 07:30:01 pm
Hi,
Just wondering if anyone out there is or has experienced what I have.
I'm almost 3 months post GK, and still have constant dizziness.
Have not been able to return to work or drive a car!!  My Dr. is just chalking it up to
I'm in the 2% that don't go well !!!
Gayle
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Acoustic Neuroma and Cyst in my head.
I volunteer at:
www.AcousticNeuromaFoundation.org
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