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Author Topic: post-CK symptoms  (Read 6162 times)

an0806

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post-CK symptoms
« on: February 06, 2007, 01:29:01 pm »
Hi All,

I just finished my CK 5 days ago, and I am having some side-effects info to share with all:


  • Sore-throat feeling on the AN side
    Feel fullness in the AN ear
    Tingling and slight numbness on face (both sides)
    Very tired especially starting on the 3rd day after last treatment
    Feel a bit blue (may be it is just me)
    Frequent visits to bathroom especially during nights
    Love food more than ever!

Honestly, so far, I can tolerate ALL of these side-effects. But, how worse will they get?

Does anyone also have this "Frequent visits to bathroom especially during nights" problem, after CK? I had such problem before CK, but not as bad as now.

Another question: How can anyone be 100% sure that the tumor has actually died, instead of just being dormant? If the CK missed just one tumor cell...... My understanding is that it takes just one living stubborn tumor cell to make it grow into a measurable mass one day.

 I'll have my first post-CK MRI in August.

an0806
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tony

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Re: post-CK symptoms
« Reply #1 on: February 06, 2007, 02:31:25 pm »
I cant comment on the full range of symptoms
- but I did feel "cold-like" a day or so after GK
- and normal cold remedies did seem to help
but dont over do it  yes ?
best regards
tony
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HeadCase2

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Re: post-CK symptoms
« Reply #2 on: February 06, 2007, 03:13:08 pm »
an0806,
  If they gave you steroids, to prevent swelling, that probably explains the "Love food more than ever!"  Steroids can make you very hungry.
Regards,
 Rob
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1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
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Sue

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Re: post-CK symptoms
« Reply #3 on: February 06, 2007, 03:23:09 pm »
Hi

I had GK.  My face on the AN side felt like the Aurora Borealis looks....if that makes sense to you.  It just pulsated with tingly sensations and I used a cool washcloth to try to help it calm down.  My trigeminal nerve was "draped" over the AN, so it was not so very happy for a week or so after my treatment.  It calmed down soon enough.  I already had the facial numbness, and I still have that.  Bummer.  >:( The other symptoms you have, I don't think I had.  I was very tired, but that was because I got insomnia from the steroids.  I was miserable.  I was soooo glad when that week was ove, the pills were at an end, and I had more than 2 hours of sleep. :D
Good luck to you.

Sue in Vancouver

« Last Edit: February 06, 2007, 03:26:38 pm by Sue »
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


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flier58

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Re: post-CK symptoms
« Reply #4 on: February 06, 2007, 04:04:47 pm »
Hi,
I am 3 mos post CK and had all of your post CK symptoms including case of "feeling blue" which was truly unexpected.  I still have issues with my throat but it may be Chicago winter and dry, cold air.  I still have trigeminal irritation (present before tx) ie. sore tongue, slight numbness of the lips/mouth on AN side.  All very much bearable and was told that all of them may get more bothersome due to tumor swelling following CK and they may stay with me forever.  I can easily deal with that as long as it doesn't get worse.  But it may also subside with time-that would be great. My first MRI will be in May.  Keep an eye on posts from "marystro" - she is getting her 1st 6 mos MRI and audio test.  Your symptoms will more than likely improve but may be with you in some degree for a while.  Good luck.
Flier58 
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an0806

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Re: post-CK symptoms
« Reply #5 on: February 06, 2007, 04:17:28 pm »
Hi Everybody,

Thanks for your prompt inputs to my post. Just makes me feel, let's say less "alone", when I read other people are going thru the bumpy AN roads together with me. Let's all share info and let's all hang in there !

This is a great forum !!!!

an0806
CK 2/07; 4mm right AN.
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ppearl214

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Re: post-CK symptoms
« Reply #6 on: February 06, 2007, 05:20:11 pm »
Hi an,

Well, I am (as of this week) 10 mos post CK.

I can share with you that initially, I had some facial numbness in my chin area that did not exist prior to treatment. That is now all gone.  I had initially enhanced tinnitus, which is now 85% gone.  I had the hungry horrors and blamed the steroids (Decadron) for that as it will increase appetite.  (Great to use meds as an excuse for the munchies).  I did not have frequent nighttime bathroom use.  Ear fullness did exist in both ears. It has all but gone.

I can share that at my 8 mos post treatment MRI, we noticed the beginning stages of tumor death. I have my next MRI next Monday, so I hope to continue on this path of tumor death. As you should know, it may take 1-1/2 to 2 yrs for complete tumor death (timeframe will vary).  But most of all, have faith in your decision, don't look back and keep a (temp numb) chin up.  Please remember, in the cases of AN and CK, from over 10 yrs of use, there is only 1 reported failure.  I like them odds.

Hang in there.
Phyl
« Last Edit: February 06, 2007, 09:19:37 pm by ppearl214 »
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an0806

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Re: post-CK symptoms
« Reply #7 on: February 07, 2007, 12:13:49 pm »
Rob,

So it was Decadron that made me hungry.

But I only had 3 pills of Decadron, one after each CK treatment, and that was aalmost a week ago!

Do you or anybody know how long does the side-effects of Decadron (or any steroid) persist?

I'm just glad that I only took 3 pills!

an0806
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ppearl214

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Re: post-CK symptoms
« Reply #8 on: February 07, 2007, 12:42:00 pm »
an,

if you only got 3 Decadron (not sure what mg they gave you but would think low dose -- maybe 2mg) over the course of 3 days, then the drug should be out of your system in approx 1-2 wks post last pill.  My dad's a pharmacist and I discussed it with him when I was on it post CK.

Hope that helps.
Phyl
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an0806

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Re: post-CK symptoms
« Reply #9 on: February 07, 2007, 01:07:58 pm »
Phyl,

It is good to know that such potent drug will be out of my system soon. Thanks!

an0806
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Dealy

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Re: post-CK symptoms
« Reply #10 on: February 07, 2007, 02:36:49 pm »
an806- I had FSR last summer and was put on Predisone shorthly after for six days. I had too get up an use the restroom so much  that I felt like moving the stool over too the bedroom. Yes I can relate to the restroom bit. I never was on decadron. I am getting symptoms on the other side of my face after six months of treatment-I am nearing 7 months on the 10th of this month. Stuffy nose after 3 months out-I sound like I have a constant cold. Otherwise life is just a bowl of cheeries-HA. HA. -I wish. Ron
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an0806

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Re: post-CK symptoms
« Reply #11 on: February 07, 2007, 05:06:11 pm »
Ron,

Thanks for your input which may mean that this "frequent urination" is a side-effect of steroid. Any medical/pharmaceutical professionals on board can verify on this?

Sorry to hear that you still have some symptoms after 7 months of radiosurgery. Hopefully they will subside as time goes on. And, your good attitude will help too.

With these few symptoms I am having now (frequent nightly bathroom visits, slight facial numbness, occasional fullness on the AN ear, infrequent dizziness, and fatigue), and especially after being told by my doctors that they most probably will be lessened in the months to come, I am very happy with the CK decision I made.

Regards,

an0806
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