Author Topic: Gamma Knife -- need your advice :)  (Read 3340 times)

tiway_01

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Gamma Knife -- need your advice :)
« on: October 01, 2016, 05:41:12 am »
Hi everyone! I am 29 years old and I was diagnosed last month with a small AN (.8x.9x.5 cm) in my right internal auditory canal, my sypmtoms are tinnitus, heavy head and feeling drunk when walking. I know this tumor will not get smaller and I don't want this thing inside my head anymore, it's already affecting my life I can't even work. I just want some advice or someone to talk to who did Gamma Knife. I am scared because I'm not sure what will the outcome or am I gonna have problems 20-40 years after GK? will my symptoms improve? can I be normal again after GK? Thank you in advance for your time :)

rupert

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Re: Gamma Knife -- need your advice :)
« Reply #1 on: October 01, 2016, 07:28:15 am »
   Even small AN's like yours can have some bad symptoms.  At least you know it's there now and believe me that's a big plus.  A lot of people aren't diagnosed until the AN is much larger.  The tumor is growing off of the cells around the balance nerve.  The balance nerve is being damaged either by pressure,  or  the tumor is taking away the blood supply of the nerve.   The problem is that as  the nerve slowly gets damaged there are still partial  signals that get through and this causes your brain to get mixed up signals from one side,  resulting in dizziness and balance problems among other.  Eventually it will probably affect your  hearing also as the two nerves are in close contact.
   Have you talked with any doctors yet on treatment?  The best advice you will get here is to seek out opinions from doctors that have vast amounts of experience with AN's.   Many of these doctors are mentioned here on these forums.  As your tumor is small you probably have most all treatment options available to you.  Watch and wait, Microsurgery or Gamma or Cyber Knife.   
   Unfortunately nobody can predict the future.  Chances of symptoms going away, tumor regrowth, facial paralysis and every thing else that could happen with or without treatment is just all a guess.   Seeking  out the best doctors have proven to produce better outcomes but, alas,  there are no guarantees.   My AN was about 3 times bigger than yours.  I actually had very severe dizzy spells 10 years before being diagnosed.  They would usually calm down after a while.  It wasn't until I finally realized there was something wrong with my hearing that I was finally diagnosed.  I had GK at the University of Pittsburg Medical Center (UPMC)  seven years ago now.  My hearing was gone before treatment but, other than that life has been pretty good.  Good luck to you .
« Last Edit: October 01, 2016, 07:31:43 am by rupert »

Blw

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Re: Gamma Knife -- need your advice :)
« Reply #2 on: October 01, 2016, 09:25:29 am »
Agreed. Search McCrue and look for his posts that list the top surgeons and radiation specialists. Yours is on the small side so I think it would follow that the surgery would be less complicated or the radiation shorter, both resulting in less damage. Depending on surgical route, it might be possible to save your hearing. I would also think that if you radiate, your would get a much lower dose to surrounding areas and your nerves may make it through. However, you are on the young side, so you would be looking at 40-50 years post radiation, and I doubt there is any data on regrowth that far out. When they regrow, they are much harder to deal with. The safest way forward would be to use your time to first identify the best doctors in both fields, then talk to as many as you can.

tiway_01

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Re: Gamma Knife -- need your advice :)
« Reply #3 on: October 01, 2016, 05:45:04 pm »
Hi guys! I've talk to 2 neurosurgeon in my place and they both said that my best option is gamma knife. The other dr told me that even my tinnitus will improve or it will disappear and my hearing will be save. Oh, i forgot to mention that I'm from the Philippines. Unfortunately, i have limited options here. We only have 1 hospital that has gamma knife. I'm gonna talk to another neurosurgeon next week and I hope he has different opinion. But you guys did the GK right? Are you happy with the results? Thank you for replying I appreciate it a lot.

mcrue

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Re: Gamma Knife -- need your advice :)
« Reply #4 on: October 03, 2016, 10:55:16 am »
While every situation is unique, I think it's unlikely tinnitus will disappear after GK. As a rule of thumb, as hearing gets worse, tinnitus usually gets worse. Gamma Knife, when successful,  stops the tumor from growing so you can avoid major brain surgery and the possible complications associated with it.

Best wishes.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan