Author Topic: Fractionated Stereotatic Radiosurgery-Varian Trilogy  (Read 589 times)

Scrag75

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Fractionated Stereotatic Radiosurgery-Varian Trilogy
« on: March 20, 2020, 04:50:19 pm »
Good afternoon everyone.  I have always been a lurker when it comes to forums so it is rare that I decide to post.  In this case I thought it would be important to share my experience since there are very few instances where a Varian Linac was used.  Most posts relate to either a gamma knife or a cyber knife so I figured this would shed some light.  To be honest I am not sure if there is a huge difference between cyber, gamma or varian linac but here it goes. 

My first symptoms occurred right before labor day of 2019 with sudden hearing loss.  After numerous appts with the general practitioner and a HNT I was diagnosed with 20mm X 20mm X 24mm AN in mid-November of last year.  Talk about a swift kick to the you know what.  Luckily I found this site and was able to soak in all the information that I could get.  I will say this really helped guide me through the various options that were given to treat the AN.  I met with a neurosurgeon, radiologist, and a head and neck surgeon and went over the pluses and minuses of each procedure.  I will say that this site really provided me with the knowledge to speak with each doctor in a manner that helped get the answers for the questions I had.  I know that everyone's journey is different but I felt very comfortable with my decision to move ahead with radiosurgery.  As I made the decision we agreed that we would schedule the procedure after the holidays. This is where things got interesting.........

On January 1st I decided to play golf with my buddies.  As I was playing I started noticing that I could not focus on certain things without them moving.   It was subtle at first but within three days I was having full blown balance issues.  For a person who has been active all of their life, playing sports and having excellent coordination it was downright scary.  It was especially scary since all of the doctors told me that the tumor was very slow growing and that I could decide to have the procedure in 6 months if I wanted to.  Now, up until this point I had only had hearing issues that affected the high frequencies so they told me I had about 70% hearing on my left ear.  Not bad..... I could still function very well without a hearing aid which is why I went with radiosurgery.  It was the best approach in keeping the hearing that I had left.  The whole balance issue was something that I did not factor in my decision to go with radiosurgery so back to the drawing board.  I went ahead and rescheduled an appt with the neurosurgeon as he was the most neutral on what procedure would be best for me.  As I discussed the whole balance issue he told me that they normally cut the vestibular nerve when they remove the AN and explained that we all have two vestibular nerves and in most cases we adjust to having just one.  That struck a chord with me in two ways.  One, surgery to remove the AN did not directly help with the balance issue as they cut the nerve and two, his statement that our brain can adjust to the balance issue resonated with me.  Radiosurgery here we come and it will need to come quick as I did not want any further complications from what I had recently experienced. 

My radiosurgery was scheduled for the first week in February at Kaiser in Anaheim with 5 treatments at 5 gy each or 25gy total.  As my procedure date came closer I noticed that my anxiety increased and I was a wreck the night before my procedure.  The procedure itself was quick and easy only lasting maybe 15 minutes.  All in all it was a good experience that was much easier than I thought.  I did not have any immediate complications that were noticeable.  I was living life much the same way as I was before the procedure.  So much so that I ended up playing golf, basketball and going to the gym in the afternoons after my procedures.  I even snow skied the weekend after (I know...I know) which was really interesting knowing I had slight balance issues. 

It is now March and I feel like my hearing is slightly worse but barely noticeable.  The tinnitus was much louder in the weeks after the procedure but has seemed to die down.  The one thing that improved immensely was my balance.  It is really difficult to say why.  Was it the radiosurgery? or was it the fact that my brain adjusted.  I am not sure but I do know that after skiing that same weekend my balance has been normal.  I know that vestibular therapy is about moving and forcing you to deal with the imbalance that you may experience.  Maybe the skiing helped my mind in that regard but I truly do not know.  When I had my follow up call with my doctor I told her that my balance improved but was not sure what helped.  She seemed to think it was the radiosurgery but who knows.  All I know is I am glad I have my balance back.  I know I am not out of the woods as I could get some complications in the next 6 months or so but as of now I am a happy camper. 

I am sorry for being so long winded but writing this out has been very theraputic for me.  Although all of this happened in a 6 month period it was a long and lonely journey.                       

jami

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Re: Fractionated Stereotatic Radiosurgery-Varian Trilogy
« Reply #1 on: March 22, 2020, 07:07:09 pm »
Thanks for sharing your story - and really good news that your balance is improving. I always love reading good news!
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

clover

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Re: Fractionated Stereotatic Radiosurgery-Varian Trilogy
« Reply #2 on: May 07, 2020, 09:53:49 am »
Thank for sharing your experience. A quick follow up question. Did you have all of your 5 treatments (5 gy each) on the same day? Or were they spread out over a few days? Also, did you have Gamma Knife or CyberKnife treatment? My partner has a similar size AN to yours and is considering Radiosurgery, but we're still unclear about the pros and cons of Gamma Knife vs CyberKnife, and a single treatment versus a fractionated treatment such as the one you had.

Thank you again for sharing your experience.


notaclone13

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Re: Fractionated Stereotatic Radiosurgery-Varian Trilogy
« Reply #3 on: May 07, 2020, 12:42:40 pm »
I’m pretty sure from reading his posts he had 5 treatments of 5 g each on 5 different days for a total of 25 g. My friend had a similar sized tumor and she too was treated with the Varian system and that’s how they did hers.

richcooks

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Re: Fractionated Stereotatic Radiosurgery-Varian Trilogy
« Reply #4 on: May 07, 2020, 05:57:51 pm »
Best of luck moving forward after your treatment.  I too had fractionated ... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I too had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 10 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?" 

 


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