Author Topic: I *Think* I'm in Watch & Wait?  (Read 909 times)

CoopCrafts

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I *Think* I'm in Watch & Wait?
« on: December 11, 2020, 08:52:09 am »
Hi, I'm Sarah, a Newbie.

I have a tiny little demon of a tumor, only 3mmx2mm but it's already hospitalized me once after vertigo left me with very low potassium levels.  (I couldn't move without vomiting and it would not stop.  Now I have meds, so there's a bit more control there, and it's been over a month since vertigo last visited.)  Today I'm having "brain zaps," general brain fog, fatigue and slight tinnitus.  My past symptoms have included the vertigo and balance issues that have caused me to need a cane a few times.  (Walking fine now.)  I stopped driving in August because turning my head from side to side is disorienting, it definitely makes me an impaired driver.  Is it normal that symptoms come and go like this?  Should I expect vertigo to sneak back up on me?

I was diagnosed in October, but looking back I can see I've had symptoms for at least a year.  My ENT is very familiar with AN, and I liked him very much, but communication seems to have stopped.  The last time I visited his office, he had me take two more tests.  He had me sign a paper saying I'd pay for them if insurance wouldn't, but I don't know what the tests were for and I don't know the results.  That was in early November.  I called him November 17 asking about the results, and as of today (December 11) I have yet to hear anything back.  I've even left messages that I'd like to go ahead and schedule surgery, understanding that with the pandemic it may be a date many months in the future.  I'd just like to feel settled, to know what's going on.  I need a plan.  (My surgery would be mid-fossa, done by a surgeon about four hours away who has been contacted by my ENT, as my ENT only does translab and my hearing is still good.)

It's possible that I'm in W&W in his mind and he thinks there's no rush here, although that was never mentioned to me.  I understand mine is tiny, they grow slowly if at all, that medically there actually is no rush.  I feel like W&W is code for "let's wait until it's bigger" and I just don't care for that.  Better results are more likely from smaller tumors, I've read.  I still have decent hearing.
 Covid means my adult daughter is living with us before going to grad school and it would be helpful to have surgery while she's here and can drive me to appointments and help afterward.  Also, I work from home but the fatigue has me napping nearly every day, and I just never feel ... good.  I worry about losing my job of 12 years, and how do I get a new one when I can't drive and always want a nap?  Should I sell my car?  Watch and wait until I don't have a job and can't pay for surgery?  Leave the possibility of vertigo returning as we just wait?  (I really hated the vertigo, if you can't tell.)  Or am I crazy to want surgery so soon after diagnosis?

Thanks any who read this far.  I'd love to hear how you made your decisions, or any advice you could share.
Tiny 3mmx2mm Found 10/23/20
Dizziness, Wonkyhead, Vertigo,
Slight Hearing Loss, Tinnitus on Left
Future Mid-Fossa Before It Grows

Greece Lover

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Re: I *Think* I'm in Watch & Wait?
« Reply #1 on: December 11, 2020, 02:13:52 pm »
one of the weird things about these tumors is that they give us options! It sounds like you're thinking through them well.

It does seem your tumor is quite small for surgery, and I suspect most people on here would advise you to wait.  Watch and Wait isn't necessarily "wait until it gets bigger." Some people don't have them grow and stay on watch and wait for a long time.  There is a possibility that even if it doesn't grow your hearing could deteriorate, so that might be something to watch as well.

For me, while mine was "on the large end of small" according to my surgeon, and I could have waited as well, I decided to assume the risk early on and have the middle fossa surgery, knowing that it gave me a better chance at a long term best-case scenario in which my hearing was preserved.  It seems like that's where I'm at, and I'm glad I did it.  Some people also just "want it out."  We all are finding our own path in this, and the most important thing is to consider all your options and have the most experienced doctors you can find.  Who is the Doc who would do middle fossa?

Best of luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

CoopCrafts

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Re: I *Think* I'm in Watch & Wait?
« Reply #2 on: December 11, 2020, 04:11:19 pm »
Thank you for your reply, Greece Lover!  It's good to hear you're glad you had your surgery when you did.  I do want mine "out" but I do understand it's tiny.  I hope that like you, I'll be satisfied with it whenever it is time.  I can't tell any change in my hearing, but I do notice slightly more tinnitus, which I think means I might have lost a little more.  It's still very useable at this point though.  Douglas Chen at Pittsburg Ear Associates is the surgeon who'd do the middle fossa. 
Tiny 3mmx2mm Found 10/23/20
Dizziness, Wonkyhead, Vertigo,
Slight Hearing Loss, Tinnitus on Left
Future Mid-Fossa Before It Grows

Greece Lover

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Re: I *Think* I'm in Watch & Wait?
« Reply #3 on: December 14, 2020, 12:49:10 pm »
Good luck, Sarah.  Make sure to ask Dr. Chen how often he does Mid Fossa, and what percentages they have on various results.  Just to make sure it's something he does quite often.

feel free to send me a DM if I can be helpful.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed not tumor.  No MRI for four more years!

 


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