Author Topic: life after GK surgery 4 1/2 years out what have I learned  (Read 4046 times)

ewhitese

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life after GK surgery 4 1/2 years out what have I learned
« on: March 01, 2018, 09:40:04 pm »
I am a post toasty 5 years ago I was diagnosed with a small AN on the right side, found through prep for sinus surgery. My symptoms were hearing loss, twitching eye lid and cheek muscle.  I mostly felt fine.  My AN was 10mm x 7mm I could have gone to watch and wait but I decided letting that little bugger alone was going to make things harder to deal with later not better why wait? So 2 months later Gamma Knife at UPMC Pittsburgh. The anxiety of knowing I had a tumor in the brain was worse than the actual surgery.  I have had my share of post GK issues, balance, dizziness, almost total hearing loss in right ear, a short bout of vertigo, anger, depression, headaches.  If you do a search you'll find my posts deep in the recovery process.

I drove myself home after each GK treatment painless and noninvasive.  I went right back to work as a vocational teacher in a tech school, I put in a school year during which my post surgery symptoms began to get the best of me.  I realized I was a safety hazard in the shop environment and so took an early retirement. I may have made it longer in my career if I had watched and waited for a while or taken a medical sabbatical and gone back to the classroom but (what if) is a part of the why me stage.  I don't hang out there anymore.

I think if you want a nonscientific comparison of surgery and Gamma Knife you are trading a short shockingly harsh trauma to your head for a slow motion evolving attack that sneaks up on you as the radiation swells the tumor before it dies and begins to shrink.  I can say that my symptoms and recovery are unique to me, I have read so many posts here and no two are the same, but I have seen many issues that make me say ya that's me to. Reading other peoples experiences helped me discover and put a name to the things happening to me.  No one treatment is best for all patients, if there was the rest would be gone by now.

After going through the poor me stage, the why me stage, the who cares anymore stage I realized I needed to move to the take back control stage.  I had a vertigo attack and a balance issue that made me look at my feet in order to walk and stand up with out holding on to something.  I started walking, I started with a trip down the road in front of the house measured by telephone pole distance.  The first week was an exhausting forced march from one pole to the next one and back.  Looking at my feet and keeping up right.  I forced myself to move to the next pole and just kept pushing myself to go a little further each day.  Eventually by the end of summer I was walking 4 miles in a big circle around the neighborhood. I eventually quit watching my feet and forgot that I had a balance problem. It didn't necessarily go away it just is no longer my focus and my body has compensated in ways I am not sure how or when what changed.  At first I did some vestibular rehab teaching me ways to exercise my balance nerve concentrating on taking steps negotiating obstacles so on. Now I don't think about it at all, I do have some balance things, but I don't take notice. I was able to return to down hill skiing, at one time pre AN I did a pretty good imitation of the giant slalom on the black diamond trails but now my brain says go and my feet say wait a minute so I stick to the cruiser trails.  I'll admit skiing has lost its thrill but I can do it.

My tumor has shrunk my symptoms are manageable and my new normal is actually normal now. I still have issues but who doesn't. I can function just fine and I have learned how to compensate for the times I don't.
In the past 2 years I have remodeled 2 bathrooms, rewired a living room, replaced a small concrete porch, repaired a brick wall, cut 20+ cords of wood, care for a large garden and numerous other small projects.  I polished my resume this month and am in the job search.  After 31 years of teaching I am ready to reinvent myself.

So what have I learned? I am more resilient than I gave myself credit for,  the brain can adjust and relearn, recovery is a sum of many parts. In the beginning, recovery is a distant overwhelming horizon but when tackled in small bites and beginning with simple steps the add on effect becomes easier and easier.  I don't know what the future holds for me but I do know that I am reaching out and embracing it rather than sitting back and watching it go by. I am not the same person I was 5 years ago, my life is still as full as I want it to be. Prior to AN I was teaching full time, farming 350 acres of corn and soybeans, skiing, hunting and fishing. Now I rent the acreage but still live on the farm I hunt and fish and garden, canning my own vegetables and heating my house with wood I harvest myself from the woodlot.

Life has changed for me and my circumstances are different than they were but I am still me.  I can do things I used to but not all I used to.  I will always be looking for new projects, new adventures I refuse to give up and sit down. The joy of living is not found around me but in me and I will take that joy into the world with me where ever my circumstances take me.
 

SueLL

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #1 on: March 05, 2018, 03:35:47 pm »
Very nicely put - thank you for the post!

Each AN experience is different, but most have difficulties at some point or another that have to be dealt with.  We all also go through various stages as we deal with them.
Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

Joan Mingo

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #2 on: March 18, 2018, 07:38:50 am »
Beautifully stated and inspirational! Thank you.
ANA diagnosed Dec 2016
14x4mm schwanoma left ear
75% hearing loss- 12% recognition remaining
Watch and Wait

notaclone13

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #3 on: March 18, 2018, 08:09:09 am »
Joan beautifully expressed what I wanted to say. Thank you for sharing your difficult but ultimately positive experience. Your students will be lucky to have a teacher like you.

juliawilson

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #4 on: March 21, 2018, 04:57:59 pm »
What a great post! Indeed, this is a learning experience--learning about AN, for sure, but--as you point out--learning about one's self. Like you, I discovered that physical activity really helps. Doing daily balance exercises that I learned from the AN handout on balance has also been helpful, not only with balance, but it seems to clear my head, too.
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16 mm x 10 mm x 11 mm, diagnosed at UC Davis in Sacramento, 2/2017
CyberKnife with Drs. Chang/Hinniker at Stanford 3/2017
16 mm x 9 mm x 10 mm  at 6-month MRI, 9/2017

ColleenS

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #5 on: May 02, 2018, 11:04:25 am »
Great post! I remember trolling this site daily when I was first diagnosed and then awaiting surgery. Trying to gain hope and knowledge of what to expect. I now know that each person has their own unique experience, but you are right, some things are common and we can all relate. Thanks for sharing this "happy ending" and your great outlook to the future.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness
10/21 Mild facial paralysis still

eltorma

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #6 on: May 07, 2018, 08:39:53 am »
Thank you so much for your inspirational blog about your AN journey!  I am only 4 months out from GK but have your same philosophy and am not letting the wonkiness or facial twitches get me down.  I continue to ride my bike and walk as much as I can, even on the beach, in spite of the fact it sometimes wears me out tremendously!   Glad to know there's lots of hope and things to look forward to in the years ahead!  thanks for sharing.

Sanderson

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #7 on: July 28, 2018, 04:19:54 pm »
Well done! Very inspirational! Maybe you should write a novel!

I had my surgery in March and will be returning to the classroom shortly.  I worry about not being able to hear from my left ear—triangulate sound/ voices. I’ve tried to visualize what I would do if I wasn’t teaching. Time will tell if I will need to make a career change. I tell my students about conquering the bumps in the road. Now I have to take my own advice.
Sara
Acoustic Schwannoma surgery March 28, 2018
Sutter Medical Center in Sacramento
Deaf in left ear
Facial paralysis on left side
Balance is fine thanks to walking three energetic dogs everyday and yoga twice a week!

angielina

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Re: life after GK surgery 4 1/2 years out what have I learned
« Reply #8 on: August 30, 2018, 08:30:16 am »
Thank you so much for your inspirational post.
 I am one year post Gamma and I also have decided that this will not define me. I continue to do most of what I did before - everything just seems to take me longer!!My age (71) also plays a factor!!
Balance issues and walking are my biggest problems - other factors play into that.(polio, hip replacement and knee replacements) but I keep pushing - even when I don’t want to. Next week my husband and I are going on a trip. Bringing my walker, so that I can do as much as possible and not hold by husband back. All will be good. I have decided!!! Wish us luck.