Author Topic: Post Gamma Knife spaciness  (Read 841 times)

suz

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Post Gamma Knife spaciness
« on: January 02, 2018, 06:10:38 am »
I had GK on 12/22 and everything went beautifully. My concerns about the head frame were unfounded- it was not that bad. The main side effect I noticed after was an increase in tinnitus and other noises in my AN ear. But over the past few days I have developed a Spacey feeling - like I need a cup of coffee (but I just had some). I can't seem to shake this spacey feeling. Is this normal? Anyone else feel it? I heard about folks being tired after GK before t this is not really tiredness. I just feel like I can't quite focus and it's unsettling.
Suz
Tumor 1.8cms x 1.5 cms x .5 cm;partially removed 7/14/10 by Drs. Friedman & Schwartz of House Ear Clinic in LA. Moderate SS hearing loss.
Re-growth approximate 3 mm per year; GK planned for 12/2017.
Philadelphia, PA area

Pembo

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Re: Post Gamma Knife spaciness
« Reply #1 on: January 02, 2018, 12:52:00 pm »
I had gamma for regrowth in October.  In the days after I too felt odd. I think a lot of it was my own thoughts....I just had a type of brain surgery and that's weird kind of thing. In the early weeks I noticed some facial things. I have some facial paralysis and I almost felt like the gamma woke the nerve up a little.

About 4 weeks after the fatigue hit. I was fine most of the morning and early afternoon but by dinner I needed to just lay down. I'm still not all that energized for the whole day. Earlier in the day is okay.

I am 3 months post-op now. Biggest complaint is a low grade headache although with super freezing temps I don't know exactly what is the cause.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

alicia

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Re: Post Gamma Knife spaciness
« Reply #2 on: January 30, 2018, 09:10:51 pm »
Hi Suz and Pembo. I recently had gamma on my regrowth, logged back into the forum, and found your posts. I feel similar with an inability to focus as usual and some fatigue. Just yesterday, a consistent headache behind my ear. Thanks for posting. Seems the forum is not as busy as it used to be years ago :)
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

ColleenS

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Re: Post Gamma Knife spaciness
« Reply #3 on: November 08, 2018, 07:59:58 am »
I am one month out of having 5 sessions of stereotactic radiation for regrowth. I am tired as well and have some balance issues and yes, spacey too. Lots of rest seems to help all of my symptoms. How are you all feeling now? How many treatments did you receive?
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of the tumor; no facial issues
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14/17 & sprung on 5/15/17.
5 Radiation Treatments 10/2018 after tumor grew back.

alicia

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Re: Post Gamma Knife spaciness
« Reply #4 on: November 08, 2018, 10:29:23 am »
Hi ColleenS....I am now 11 post GK. One treatment Dec 2017. I experienced major fatigued for months this spring. I also have facial paralysis that set in 8 weeks post GK. I am slowly getting movement back. I decided to drastically change the way I ate in May and had huge energy improvement. I feel good other than the mild paralysis at this point. Hang in there and rest whenever you feel you need it!!
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

notaclone13

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Re: Post Gamma Knife spaciness
« Reply #5 on: November 08, 2018, 12:26:15 pm »
Hi Alicia,
Thanks for your posting. Great news that your facial paralysis is diminishing.  Do you know how many Gys of radiation you received by GammaKnife?  You have been through a lot and hopefully you will have no further issues with the irradiated AN and will have complete facial nerve healing.

alicia

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Re: Post Gamma Knife spaciness
« Reply #6 on: November 08, 2018, 01:27:38 pm »
Hi notaclone13...Thank you very much!  I do not have that number in mind. I will look into that!
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

ColleenS

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Re: Post Gamma Knife spaciness
« Reply #7 on: November 13, 2018, 08:14:24 pm »
I am encouraged Alicia that your partial paralysis is getting better already. What kind of "major diet changes" did you make? I eat fairly healthy, but curious to what you did to improve your energy level.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of the tumor; no facial issues
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14/17 & sprung on 5/15/17.
5 Radiation Treatments 10/2018 after tumor grew back.

alicia

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Re: Post Gamma Knife spaciness
« Reply #8 on: November 13, 2018, 09:08:26 pm »
Colleen, I decided to start Keto. I went very strict...so no sugar, wheat, gluten, hence very limited processed foods. Carbs from veggies only. Also added more fat. The more I read, fat is so important to our brain health. I am extremely happy with how my body reacted. Within 2 days, I stopped napping and started feeling completely different as far as the brain fog. I still mentally process different post surgery and post GK. I am slower. But I have tried to slow my life down a lot. So maybe it's me trying to think before I speak :)
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

ColleenS

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Post Gamma Knife spaciness
« Reply #9 on: November 19, 2018, 06:50:56 pm »
Thanks, Alicia. Yes, I think I answer slower as well and think about things much more than I used to.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of the tumor; no facial issues
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14/17 & sprung on 5/15/17.
5 Radiation Treatments 10/2018 after tumor grew back.