Comments on: Why Wonky-Eye?

By: Fred Bursch

Fred Bursch — Mon, 28 Nov 2011 15:22:24 +0000

I also was diagnosed with a trigeminal schwannoma 10 years ago. I have completed 2 brain surgeries (which also damaged my 5th nerve) and was partially numb throughout the right side of my face. They only removed 75% as the remaining 25% is around brain stem and main artery. But always had a feeling of a piece of paper pressing against my eye. I then had CyberKnife Treatment because the pain was still intense. CyberKnife Treatment was pretty new at the time and they told me I should of only had CyberKnife Treatment instead of surgery, but 10 years ago that was not an option as there is no cutting involved and it is a pretty successful radiation treatment. I also had radio tactic radiation. Now I am over radiated and no more radiation for the rest of my life. Now I just do the waiting and watching with MRI’s every 6 months to make sure the tumor does not grow into the vital organs of the brain. They do not want to remove it yet as it is pretty stable. They indicated it is the size of 2 golfballs that look like barbells.

By: liz

liz — Mon, 18 Jul 2011 21:24:08 +0000

Hey Trina,
I am happy to hear that life is going well for you. I am glad that Hawaii was such a success and now Travis is ultra scuba certified, it only shows that he is taking control of life and that is a great great thing. More vacations like this to you.
That said, since your blog is a great resource for someone going through cancer I wanted to reach out to you to see if you were interested in a new online social support network (that I am the community manager of!) called I Had Cancer. It is a new and free social support network focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I would love to tell you more if you are interested, so please let me know! Because I was so struck by your writing I would love to send you an early-access pass with extra invites for others you may know going through this journey.

Either way, thank you so much for your writing. Take care and best regards.
-Liz@ihadcancer.com-if anyone would like info on I Had Cancer please email me.

By: dominique d'angelo

dominique d'angelo — Fri, 24 Jun 2011 19:20:22 +0000

i had a trigeminal schwannoma removed in 2008. i was 21. i had nerve damage so they then had to perform a partial tarsorrhaphy. so i wore an eye patch at work and had a corneal ulcer. i was pretty blind after that and would run into things. i laughed and made jokes. you got to, right!? things like, hey, can you keep an eye on this? you really have an eye for color. lol. i also called it my wonky eye. thanks so much for this site. i really appreciate it. keep your chin up guys. xxoo- dominique.

By: Matthew Craig

Matthew Craig — Thu, 07 Apr 2011 12:40:30 +0000

My name is Matthew Craig and I was recently diagnosed with a trigeminal schwannoma as the result of an MRI for likely unrelated symptoms. I saw a neurotologist/ENT/surgeon at the University of Cincinnati Medical Center who has said that leaving the tumor in the brain of a 23 year old would be irresponsible because even if it is slow growing it will cause issues down the road. I have read your story and find it very inspiring in a time where I need inspiration. I recently graduated with a degree in Music Education from the Conservatory of Music and the University of Cincinnati- the point being I am a musician with his heart set on teaching. I have been told that surgical removal risks deafness in the effected ear and facial paralysis (I play the trumpet). Reading about you and your journey is very inspiring to me and leads me to have a great many questions for you about your journey. Since music is such an important part of my life I am hoping and praying that cyberknife would be the suggested treatment but await a meeting with the neurosurgeon as well as the neuro-oncologist/radiologist.

Thank you for your time,

Matthew Craig

By: Gary

Gary — Fri, 13 Aug 2010 01:22:35 +0000

I went to the VA a year ago, and told them about the buzzing in my ear. They brushed it off. A year latter I went to a private dr. and had a MRI and they found a Vesibular Schwannoma, 2cm.
I am a Gulf War veteran, and I am in the process of filing a claim, but yes, I too have no idea how to proceed.

By: Candie

Candie — Tue, 24 Nov 2009 22:00:36 +0000

My husband, also a Marine, has been diagnosed with brain cancer (12/09/08). I am searching for help (and willing to help) Marines that served in the Gulf. We are working on a VA claim, and need to substantiate his illness with his service. Please contact me.
Thank you

By: Kara

Kara — Fri, 20 Nov 2009 18:36:50 +0000

My husband was diagnosed a year ago with a vestibular schwannoma, but when the surgeons were getting ready to remove the tumor, it turned out to be 7th cranial nerve schwannoma and they could not remove it or his face would have been full paralyzed. Back to when they thought it was a vestibular schwannoma, there were more treatment options if it was 2 cm and smaller. My husband’s measured 3 cm and that was the large end of what the surgeons considered a medium size tumor.

By: Joanie

Joanie — Wed, 07 Oct 2009 17:37:51 +0000

Hello,
It was very nice to find your website it makes you feel that you are not alone.Hope all is well.My son is 16 and was just diagnosed with a Trigeminal Schwanoma.His tumor is 2.5 cm.It was found accidentally after he suffered a concusion from playing soccer.He had double vision for a few weeks after but now,5months after the concusion he just has headaches and occasional “weird vision” problems.After seeing 4 doctors and 2 opthamologist because he really dosnt have any symptoms they are suggesting to wait for any treatment until we have to.I was wondering how big Travis’s tumor was?My son says he is fine but when you have just been told you have a brain tumor how good can you be.Any advice would be great.We live in Michigan.We are seeing Dr.s at Univeristy of Michigan.Thanks for anything that you think might help.I’m a very worried mom.

By: Lisa

Lisa — Fri, 12 Sep 2008 22:39:47 +0000

Hello,

I wanted to see if you could help us distribute some info about our upcoming Heroes of Hope Race for Research on November 23rd to benefit brain tumor research. The race, a 5K, 10K and Kids Fun Run, will be held at Dockweiler State Beach, in Los Angeles, CA. We would greatly appreciate it if you could spread the word to family, friends, and colleagues. Teams can be set up in honor of loved ones, or sign up to become a virtual runner.

We will also need many race day volunteers and as always are still in need of prize donors and sponsors. Please help us find a CURE for brain tumors.

More information regarding this event can be found at http://www.tbkf.org and sign up is at http://www.tbkf.org/run.htm.

The day will be a fun filled day of Hope, with lots of prizes, food and beverages and an expo. Please respond and let us know if we can provide you with flyers as well.

With Gratitude, and Together in Hope

Lisa Millar
http://www.tbkf.org

By: War Man

War Man — Thu, 21 Feb 2008 06:33:01 +0000

T, I never would have guessed, that you were ever sick. How I admire you , for steppin’ up to the entrepreneurial plate! I have learned something from this site tonight; courage, knowledge, forbearance, love. With respect, War

Oh, wonky eye, is a nice touch.