Author Topic: What do I do?  (Read 4198 times)

LeslieG

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What do I do?
« on: July 14, 2015, 11:22:04 am »
I was just diagnosed with a vestibular schwannoma.  It's small, 6 mm, but I already have symptoms, specifically balance, dizziness and decrease in hearing high pitched frequencies.  I am a wreck.  I know I should go slow and speak to as many doctors as possible, but I want this thing out of me!  Also, I am a single mother of a 17 year old who is about to embark on the college application process and I want to be well when he is going through all his stress.

Any words of advice or warning?  Assuming all goes well, how long does an uncomplicated recovery take?  How long can til I can return to work?  What questions must I ask the surgeons?

Any comments would be greatly appreciated.

ANnIdaho

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Re: What do I do?
« Reply #1 on: July 14, 2015, 04:24:32 pm »
Hi Leslie,

Sorry to hear about your diagnosis.  I too freaked out when I first looked up on the Internet what a vestibular schwanoma was.  But you will find this forum a great source of support, encouragement, and information just as I did back when I was diagnosised with a small AN myself back in March.

I can totally relate to your situation as I too have a 17 yr old son who will be embarking off to college fall of 2016 and a daughter who is planning a weeding next fall as well.

Definitely take your time to get some opinions from various doctors who do both radiosurgery and microsurgery. I mailed my MRI to house and to Dr. Friedman for free consults. I was in the Seattle area and met with a radio oncologist.  In the end everyone has to make their own decision. For me after 5 months I am opting for surgery to try and preserve my hearing (which is still excellent) and hopefully alleviate my daily headaches and facial "sensations".

We are fortunate though that these little buggers grow slow and are almost always benign so we have time to make the right decision for our lives and get the best of opinions.

I was told my surgery recovery time for middle fossa approach will be 4 to 6 weeks.  I'm not crazy about that as I'm self employed and the loss of income is definitely going to hurt our family.  But my quality of life has definatley been affected.  I no longer read or garden as much as I did becuase just a day of working on the computer wipes me out and give me what I call "smacky head" and all I'm good for is watching TV. ;)

Good luck on your journey and remember you aren't alone. 

Bonnie
3/3/2015 MRI 9.2mm x 5.4mm AN discovered
Removed Middle Fossa 9/22/2015 by Dr. Friedman Keck Medcial Center. Hearing preserved! Doing great.  If you'd like more details as to surgery/recovery feel free to visit my caringbridge.org website @ http://www.caringbridge.org/visit/sayonaraschwammy

mac84

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Re: What do I do?
« Reply #2 on: July 15, 2015, 11:07:27 am »
Leslie, I'm fairly recently diagnosed (Last Fall) and I understand your reaction. Advice given so far is good....but try and relax as best you can and go on a fact-finding mission yourself. Make sure you know what symptoms are related and which are not and try not to invent any. I say that because our minds can certainly get away from all of us. Happens to me!

Yours is small so you have plenty of time and may be able to manage symptoms for quite some time while you plan. I'm on the watch and wait as of now as mine really isn't growing. You need that info as well and I'm sure you have a follow up MRI scheduled to tell you just that.

Take comfort in knowing that while it's rare, there sure are lots of us here dealing with it!  :)
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

Echo

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Re: What do I do?
« Reply #3 on: July 15, 2015, 04:47:12 pm »
Your AN is small so please slow down, try to relax and give this some thought while you meet with a few Dr.s.   MOST importantly find a surgeon who has lots of experience removing AN's if you decide to move forward.  You will read about many excellent neurosurgeons and otolaryngologists on this forum.  The more experienced your surgeon the better your outcome should be.  Surgery comes with a lot of risks, and I worry when I hear someone say "I just want it out".  I understand wanting it out, but this is not the type of surgery you want to rush into.   

Most surgeons will want to wait 6 months and do another MRI to see if your AN is growing or not.  You might want to take this time to do some research and help your son through his college app process.
Just my thoughts, but I do hope you will take some time to look into your options.

Best of luck,
Cathie
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

CMC

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Re: What do I do?
« Reply #4 on: July 17, 2015, 08:07:48 pm »
Hi Leslie,

Please take your time. I have been watching,waiting and dealing with similar symptoms since 2009. I was in your same position sending my son to college which was the most stressful time in my life.  He is a senior in college now!

How I make my decision to wait still to this day is asking myself...are my symptoms going to be improved by having treatment? The answer for me is still NO. Read ...read...read about before and after treatment symptoms. If my tumor grows I have chosen surgery but for now I choose to deal with symptoms day to day. Some days are better than others...some hours are better than others. Getting enough sleep and keeping busy seem to be the best medicine. Anxiety about the tumor is by far the worst! Finding healthy ways to deal with anxiety has ultimately kept me moving. My son is doing great in college, needing me less left me in a weird limbo so I got a puppy! Odd I know because I could probably find more fun things to do at age 44 with an empty nest but I think  the responsibility and nurturing keeps me moving. Even my husband has noticed my energy. 

My point is...try to remember...the tumor is smaller than you. Don't let it define you. Keep being the loving mom that you are and you will get a handle on this. These tumors are slow. Mine hasn't grown in 6 years! Use this forum. Whenever I feel mucky, like today, I get on and read. In the beginning it could freak me out but now it just reminds me that I am not alone and how I am feeling is ....normal lol. 

I hope you can find some peace of mind for the road ahead which ever way you choose.

                                CMC  Tina
Watch'n'praying my tumor doesn't grow! 11mm/9mm/8mm

muffincat

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Re: What do I do?
« Reply #5 on: August 04, 2015, 12:32:03 am »
LesleyG,  I have no answer for you, but to say Im in the same boat, maybe slightly different
My 'fella' is also small, but determined to show its might.
 My symptoms started off as  minor imbalance problems just half a minute here and there back in Jan,  and slowly building up to being constant from about end of April onwards
Come June I had the snuffles for  2 days with no real ear involvement, jus the sore throat but  10days later had sudden deafness, I sure could hear properly at the dentists on the Mon, some distorted sound on the tues and deaf wed onwards
 Now not two months later have facial paralysis. so I cant think it read that they are slow growing
the MRI  2 wks ago showed a 3.5 x 7.6 mm.
  I am awaiting my first consultation, [ hospitals are slow here] so  am having my second one, out of area next week
Yes its frightening, yes its not fair, yes why cant it remain rare and leave us alone.
As I tried to explain to the mechanic as why I wont be leaving the garage so can they check my car out promptly in a few days time.. I walk like a duck I look like a duck, I hear sounds like a duck, but Im still me inside..
 I appreciate that  I can read and see what others are fighting, and I do hope you find a course that leads you down the path to be doing the right thing for you..