Author Topic: 1 month post gamma knife  (Read 266 times)

Toasted in MN

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1 month post gamma knife
« on: September 12, 2022, 05:47:56 pm »
I had gamma knife radiosurgery one month ago.  Everything went fine and I'm very grateful.  The lidocaine and the head frame was painful but they were fast at getting it attached.  The first few days I was in pain and was dizzy and nauseous.   I gradually felt better until last week when my head and neck both felt like they were going to explode.  I was dizzy and nauseous again.  I tried advil, tylenol, decongestants, and antihistamines.  It gradually improved after a week and I'm back to feeling somewhat better.  Has anyone else had a similar situation where there is a feeling of pain and pressure in your head and ear and neck a few weeks post gamma knife?  I've been very tired, but I understand that's a normal radiation side effect.  I also have hashimotos thyroiditis and graves disease. Most of the time I am hypothyroid but I can easily become hyperthyroid very quickly.  I'm waiting for some thyroid blood tests to see if my thyroid levels might be off.  Has anyone had an increase in thyroid problems post AN diagnosis?  I still have my thyroid and have taken methimazole or levothyroxine depending on my thyroid levels. My AN was on the left side, 1.6 cm, very close to my brain stem.  Diagnosed April 26, 2022.  Gamma Knife 8/11/22. 

donjehle

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Re: 1 month post gamma knife
« Reply #1 on: September 12, 2022, 07:54:21 pm »
Welcome, Toasted in MN, to the ANA Forums!

And thank you for making your first post!

Where did you have your GK radiosurgery?  Was it at Mayo?

I am still in the watch and wait mode so I have not had Gamma Knife yet.  So, I can't answer your questions.  But I really appreciate you sharing your experience with it.  I want to learn from what you are going through.

I used to have thyroid issues and was seeing an endocrinologist.  And I'm sure it sounds strange, but I came across a study that talked about drinking a little aloe vera gel every day to treat hashimotos.  I do that every day and my thyroid issues cleared up!  I no longer visit the endocrinologist.  It is very odd, but it has worked so well for me that I dare not stop drinking it.  If you google it, I'm sure you could find the study.  And your mileage might vary.  I'm certainly not proposing it as a cure all for everyone.

But continue to share your recovery with us.  I am very much interested in hearing the conclusion to your story.

Thanks,
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: 1 month post gamma knife
« Reply #2 on: September 12, 2022, 08:07:13 pm »
donjehle very interesting re the aloe vera juice! I became subclinical hypo after CK -I think its because of that anyway. My endo saaid two brazil nuts a day for the selenium and I sometimes take fucoidan.
Michele
20 x19x14mm AN diagnosed Feb 2019. Cyberknife .
Mri Oct 2019 showed shrinking to: 18x17x13 mm.
Mri Oct 2020 - no cystic components visible now. Slight shrinking, stable.
MRI 2021 stable no change
MRI 2022 stable no change.

gbly

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Re: 1 month post gamma knife
« Reply #3 on: September 20, 2022, 12:39:26 pm »
Welcome Toasted in MN.
I am hypothyroid myself, but I can say I was lucky and I don't notice any issues.  Please let us know what your blood work says and what the doctors do.  This is something that others are probably dealing with and don't even realize it.
What size was your AN?  What were your symptoms Looks like you went pretty quick from diagnosis to GK.  Did this forum help you decide treatment and why? I know several will be very interested. Sorry if you have it somewhere and I missed it.

donjehle and mwatto, interesting and this forum is so great for getting good intel.  I will try and see what happens.
v/r GB

donjehle

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Re: 1 month post gamma knife
« Reply #4 on: September 20, 2022, 07:20:25 pm »
This was not the study I originally read, but it is very similar:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5842288/
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

 


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