Author Topic: Maybe i was too hasty in my decision to do a GK  (Read 5319 times)

gussy

  • New Member
  • *
  • Posts: 3
Maybe i was too hasty in my decision to do a GK
« on: January 15, 2017, 01:39:00 am »
Hi
I thought i'd share my little story. I m 56 Years.
I used to have very little tinnitus in my right ear and sometime lose my balance. It was nothing that really bothered me but i was curious about cause.. In may 2015 i took an MRI and there was a very little AN on my right side. (about 7mm X 4mm X 6mm)
I was told not to worry and just to keep monitoring. This november i took an MRI and the AN had grown 2 mm. Took ear tests nothing serious but hearing on right ear was at 95%.
Dr recommended I do a GK as the AN was growing and would hit my brain stem in about 3 ears.
Not sure why i accepted and took the GK on Wednesday 11th Jan 2017.
2 days now and i feel nausea and my right ear feel blocked occasionally. (i m trying to swallow to clear the block but no luck)
My regret is the symptoms i am getting now are far worse than what i had before GK. just hope my hearing gets back to what is was and nausea and headaches subside.
I spent 1:30 in the GK chamber and it was very uncomfortable all enclosed for this length of time.
hoping i dont turn in the HULK or something next week.
regards
Guss

lilith

  • New Member
  • *
  • Posts: 23
Re: Maybe i was too hasty in my decision to do a GK
« Reply #1 on: January 15, 2017, 08:40:50 pm »
Hi Gussy,

I also had radio (LINAC) one session back in May 2016. The first 3 days were not nice, I had nausea, tiredness and my right ear (AN side) lost some hearing. But then, all went away. 4-5 post radio were difficult, more nausea, dizziness, wonky head, fatigue but by month 6 they went away almost completely and now (7 months post-radio) I feel better than before radio. Still not totally normal but maybe 90% So, do not run into conclusions, I hope your case is another positive story soon.

Best,

Lilith
33mmx19mm AN (Diagnosis 5.05.2016)
Radiosurgery in Mexico City: 25.05.2016
Pre and post-radiosurgery: little bit of imbalance, mild hearing-loss, wonky head.

Glupson

  • New Member
  • *
  • Posts: 33
Re: Maybe i was too hasty in my decision to do a GK
« Reply #2 on: January 16, 2017, 02:43:59 am »
Hello Guss,

Relax, it's only 2 days past from your traitement. You need maybe a week to recover and to feel ok. For me, it took a week.

I uderstand how you feel, I had some similar thaughts those days after my GK, same fears.
Two years later, I am quite confident that I made a good choice!

Keep us informed,
Best


Willbur

  • Full Member
  • ***
  • Posts: 105
  • I will shrink it
Re: Maybe i was too hasty in my decision to do a GK
« Reply #3 on: January 16, 2017, 07:32:04 am »
Hi
I thought i'd share my little story. I m 56 Years.
I used to have very little tinnitus in my right ear and sometime lose my balance. It was nothing that really bothered me but i was curious about cause.. In may 2015 i took an MRI and there was a very little AN on my right side. (about 7mm X 4mm X 6mm)
I was told not to worry and just to keep monitoring. This november i took an MRI and the AN had grown 2 mm. Took ear tests nothing serious but hearing on right ear was at 95%.
Dr recommended I do a GK as the AN was growing and would hit my brain stem in about 3 ears.
Not sure why i accepted and took the GK on Wednesday 11th Jan 2017.
2 days now and i feel nausea and my right ear feel blocked occasionally. (i m trying to swallow to clear the block but no luck)
My regret is the symptoms i am getting now are far worse than what i had before GK. just hope my hearing gets back to what is was and nausea and headaches subside.
I spent 1:30 in the GK chamber and it was very uncomfortable all enclosed for this length of time.
hoping i dont turn in the HULK or something next week.
regards
Guss

I would have been on watch and wait for a long time. I have a 23mm tumor and have another MRI today to see if its growing or shrinking. If it is growing I am doing surgery, but if it is shrinking, then I'm not doing either. Probably would have been a good idea to check on the forums before jumping into that decision.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

WhiskyJoe

  • New Member
  • *
  • Posts: 14
Re: Maybe i was too hasty in my decision to do a GK
« Reply #4 on: January 16, 2017, 02:57:49 pm »
Your AN, though small, grew over a two-year period.  Your doctor recommended gamma knife, and you accepted his recommendation and had the procedure just five days ago.  Your symptoms should improve.  Treating an AN when it's small and least symptomatic has been shown in some cases to be advantageous.  I talked with a woman who had microsurgery in September 2016 on an AN about the size of yours.  The procedure lasted 55 minutes, and she was back at work three weeks later.  There are a few posters on this message board who believe they stayed on watch and wait too long before treatment and regretting delaying it.  Based on all that, I would not say that your decision to proceed with gamma knife now was a bad or hasty decision.
- 9 x 5 x 7 mm tumor
- diagnosed 9/16
- tinnitus, severe single-sided hearing loss, equilibrium problems, semi-facial spasms
- translab surgery Friedman & Schwartz UCSD 9/18
- 100% of tumor removed

PaulW

  • Hero Member
  • *****
  • Posts: 772
Re: Maybe i was too hasty in my decision to do a GK
« Reply #5 on: January 16, 2017, 06:08:47 pm »
I guess there are all sorts of symptoms that AN's give us.
Plugged Ear, poor hearing, tinnitus hopeless balance. It can all happen at anytime even before radiation.
Radiation often brings out these symptoms as the nerve and tumour react..
So think of it this way... you are probably getting everything you might have got anyway, but now its all up front...
Like ripping off the bandage quickly versus slowly. But at least now you have some finality with your AN..
It could be a few annoying months, but most problems clear up within 2 years, with the first 6 months being the biggest test.

Just remember that every symptom you have now you are on the road to permanent healing...
While if you are in W@W the future was still unknown.
The fact that your AN grew 2mm in 12 months would tend to suggest that it was a grower, and ultimately you would have needed to do something, and that staying on W&W was not a long term option
   
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Citiview

  • Full Member
  • ***
  • Posts: 108
Re: Maybe i was too hasty in my decision to do a GK
« Reply #6 on: January 16, 2017, 08:20:23 pm »
Your AN, though small, grew over a two-year period.  Your doctor recommended gamma knife, and you accepted his recommendation and had the procedure just five days ago.  Your symptoms should improve.  Treating an AN when it's small and least symptomatic has been shown in some cases to be advantageous.  I talked with a woman who had microsurgery in September 2016 on an AN about the size of yours.  The procedure lasted 55 minutes, and she was back at work three weeks later.  There are a few posters on this message board who believe they stayed on watch and wait too long before treatment and regretting delaying it.  Based on all that, I would not say that your decision to proceed with gamma knife now was a bad or hasty decision.

WhiskyJoe
At what institution are they doing 55 minute skull base surgeries?

ANSydney

  • Hero Member
  • *****
  • Posts: 722
Re: Maybe i was too hasty in my decision to do a GK
« Reply #7 on: January 17, 2017, 12:12:45 am »
If I had a 7mm X 4mm X 6mm tumor with little symptoms I would chose observation. A 2mm growth, given the size, is little. I would wait to see it growth each year. Observation for tumors under 20 mm appears to be the go ( http://www.bhtinformatie.nl/pdf/ingrijpen.pdf ).

gussy

  • New Member
  • *
  • Posts: 3
Re: Maybe i was too hasty in my decision to do a GK
« Reply #8 on: January 17, 2017, 01:34:54 am »
 :)
Wow thank you all for you feedback and support.
just followed up with my Doctor and says the same things. I will recover in a week or so.
Also got my report. my right eat audiometry was 60DB and SDS 90% and it was nerve 8 that was affected.

WhiskyJoe

  • New Member
  • *
  • Posts: 14
Re: Maybe i was too hasty in my decision to do a GK
« Reply #9 on: January 17, 2017, 06:28:58 am »
The woman I was referring to had her surgery at USC Keck.
- 9 x 5 x 7 mm tumor
- diagnosed 9/16
- tinnitus, severe single-sided hearing loss, equilibrium problems, semi-facial spasms
- translab surgery Friedman & Schwartz UCSD 9/18
- 100% of tumor removed

Willbur

  • Full Member
  • ***
  • Posts: 105
  • I will shrink it
Re: Maybe i was too hasty in my decision to do a GK
« Reply #10 on: January 17, 2017, 11:04:08 pm »
:)
Wow thank you all for you feedback and support.
just followed up with my Doctor and says the same things. I will recover in a week or so.
Also got my report. my right eat audiometry was 60DB and SDS 90% and it was nerve 8 that was affected.

That is what were here for. While we aren't all doctors, we all have different experiences. It is always good to do due diligence. Also, I forgot to mention the older you are the less likely they will perform surgery, thus opting for radiation.
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth