ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: rlNYC on June 11, 2019, 11:10:25 am

Title: About to have GK - 29 years old
Post by: rlNYC on June 11, 2019, 11:10:25 am
Hi everyone,
I have been reading this forum for two years and have decided it’s time to make my own contribution in case someone else finds my journey helpful.

I was 27 years old when I began to notice ringing and a mild decline in my hearing. This was in August of 2017. I’m quite young and also a singer who constantly listens to music so I knew something was off. I assumed I had wax in my ear and chalked it up to that. Then the ringing began. I had awful ringing in my ear of all different tones - and then somehow, about 6 months later it just stopped. The hearing loss I experienced has remained the same thus far and is most noticeable when I’m in a loud environment like a busy street or restaurant, on the phone or listening to music with headphones.

My mom forced me to go to an ENT in march of 2018– who sent me for an MRI revealing a 1.3cm acoustic neuroma. Panic ensued. I was devastated, especially since I had just recovered from a spinal fusion in 2015 (unrelated but traumatizing nonetheless)- I was also very confused because of my age and the overall rarity of these tumors. With the help of my parents, I made appointments with Dr. Golfinos and Roland (NYU)... Dr. Selesnick (Cornell).. Dr Sisti (Columbia).

Everyone recommended surgery and said I was too young for radiation, but having just healed from a major spinal operation I wasn’t exactly jumping to have a craniotomy - and since the tumor was small and mostly asymptomatic I entered my period we all know as watch and wait. Dr Sisti was the only one who thought I was a radiation candidate and I ultimately ended up choosing him as my doctor because he does both surgery and radiation and I felt he was unbiased and also would be supportive of what I chose to do. Anyway,  During this time I did my best to be normal and live my life. And despite the periodic breakdowns , the incessant googling and research and the 6 month MRIs , I’ve been doing just that.

My MRIs show growth and because I am young , 29 now, it was time to make a decision. For the last year I’ve done it all- read every article, driven myself insane, bargained with God, prayed , took supplements known to shrink tumors, consulted psychics. You name it. But when the day came to make the decision it was clear to me that radiation is the way to go. I truly don’t think I can handle another surgery and I also want to trust in the future of medicine and have received many signs from the universe that the less invasive option is okay to take.

Very long story short I decided to consult a second radiation doctor - Dr. Kondziolka at NYU. He gives the radiation in one single dose and Dr Sisti gives the doses fractionated over the course of two weeks. I wanted to hear each doctors opinion. After doing so , I made an appointment yesterday to have GammaKnife at NYU with Dr. K in a single dose fashion. I’m scared. I’m doing the best I can and I hope this nightmare will be over soon.

I would appreciate anyone’s success stories with GK and I would also be interested to see if there are any people my age on the forum who have chosen the radiation route. I am also open to helping anyone who may need guidance or has any questions . I know I am early in my journey but I know the power of being surrounded by like individuals.

Title: Re: About to have GK - 29 years old
Post by: samanthalambert on June 12, 2019, 02:15:54 pm
Hi there - thanks for sharing your story. I'm sorry that you are dealing with these issues and you are young. I haven't had GK, so can't offer any input there. I just want you to know that you're not alone. Also, there is an AN Facebook closed group with a lot of people - you might get more replies from younger folks on there. My best advice is to remain positive! Best wishes!
Title: Re: About to have GK - 29 years old
Post by: rlNYC on June 12, 2019, 10:39:20 pm
I really appreciate you responding and wish you the best as well
Title: Re: About to have GK - 29 years old
Post by: robinb on June 13, 2019, 06:00:51 pm

I dont come on the forum often, but just happened to see your post. I am on the Peer Support Group so reach out or DM me.In the meanwhile, my signature has the link to my GK experience you may find helpful

Title: Re: About to have GK - 29 years old
Post by: Gtmochi on June 13, 2019, 07:21:41 pm
Hi there!

We are not *exactly* the same age (I was 43 when diagnosed) but I wanted to respond and say that I was a candidate for either radiation or surgery. I decided to go with CK, and had 3 days of treatment. I chose CK over surgery for various reasons, one of which was a fairly recent spate of surgery on my hand. After that experience, I wasn't keen to have another,  significantly more invasive surgery!  In any event, my journey from treatment last April to now has been fairly smooth, and I am glad I chose radiation.  Please feel free to DM me with any questions at all!

Title: Re: About to have GK - 29 years old
Post by: kestes on June 25, 2019, 08:15:29 am
Hi!  I am sorry you are hear and that you are so young dealing with this.  I am 51 and had single dose GK treatment.  My treatment, everything went perfectly.  I was under the care of Dr. Jason Sheehan who is in the ranks with Sisti and Dr. K.  I also have two AN new friends, one went with Sisti and one Dr. K.  Both of them had good experiences and doing well.  They are both in their 60s.  I have had really no issues except recently started experiencing vertigo/dizziness.  That seems to be common in some after GK around the 6 month mark.  I do also have fatigue, hearing loss and tinnitus BUT I had all that before GK,  it just seems a little worse at the 6 month mark.  I have had followup mri, I am in the swelling stage but also showing sings of "decreased enhancement" of tumor and Dr. Sheehan believes it will shrink over time!  I do know a 38 year old who had GK and is doing well 3 years out.  She did lose her hearing, but loss of hearing just seems to be part of this tumor no matter the treatment.  I wish you the best and feel free to message me! 

I will say, I am a hiker, backpacker, and run, etc.  and while I watched and lived we did many backpacking hikes to include part of Longs Peak (13,500 ft) in Colorado with no issues. I also hiked 25 miles in Utah 5 weeks after GK!!   I have even done local hikes in North Carolina but am very cautious and slow during this dizzy stage.  I continue to jog, but again on flat even surfaces. 

Title: Re: About to have GK - 29 years old
Post by: Echo on July 01, 2019, 07:33:30 pm
I had my Gamma Knife Sept. 2013 and would do it all over again.
The first 2 years post Gamma were a little up and down, mostly dealing with dizziness and exhaustion. Best advise I can offer is to rest when you feel you need it and stay positive. Please reach out with any questions, I'd be glad to share what help I can.