Author Topic: New here and scared  (Read 1658 times)

Roggae

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Re: New here and scared
« Reply #15 on: October 06, 2023, 05:12:43 pm »
Thanks Dan. I’ve researched as much as I can. We sound similar though I’m not an engineer. I do certainly obsess over things. CK seems right. I’m waiting on another professional opinion and may get one more. I went to the best programs immediately - I’m not interested in getting the work done down the road (not possible anyway, but hopefully you know what I mean). From what I’ve learned, CK seems like the best fit. I like the odds. Surgery will not eliminate the problem; just result in more treatments after the fact. I can live with a dead tumor in my head. I’ve been apparently living with a live one for a number of years.

DanFouratt

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Re: New here and scared
« Reply #16 on: October 06, 2023, 10:31:23 pm »
Enjoy your journey and let me know how it works out.  I am still very happy with mine.  I have five months before the first real test.
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

Roggae

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Re: New here and scared
« Reply #17 on: October 11, 2023, 08:23:00 pm »
Hey Solo. Just checking in to see how you’re doing. I’ve spoken to four institutions and have decided on surgery over radiation. I feel good about my decision. Now I need to navigate the insurance stuff. My top choice is out of network which is not good. This is a scary time but you’ll get through it.

solotraveler

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Re: New here and scared
« Reply #18 on: October 15, 2023, 07:39:38 am »
Hi Roggae, thank you for checking on me, I just now noticed this.
I had a bad few weeks of dizziness, it was incapacitating but seemed to be triggered by dental work I needed done before having surgery (on my tumor side), I was in terrible pain from that plus dizziness. Do you have severe dizziness? I’m feeling like an anomaly, I’m not sure why mine is so severe?  Sometimes all I can do is lie around as things spin and I feel sick for days.  But then I go through phases of feeling more normal, it’s so weird!
My surgery date (retro) was moved to Nov 1st BUT I just went for all my pre-op stuff and we did another MRI because my last MRI was June.  The surgeon said no change at all in my tumor so he said that makes my surgery NOT an emergency at this point.  He said it’s totally up to me if I want to wait 3 months or keep my surgery date.  Ugh these hard decisions! The problem is the level of dizziness is interfering with my life, and a tumor my size… I would just be delaying the inevitable because the surgeon said at my size he doesn’t see it staying stable the rest of my life. Any growth and surgery would need to be done. But this whole thing felt so rushed since I found out about the tumor. So for now all I’ve decided is to take the weekend off from having a tumor lol.  A little vacation from thinking about it.  Still trying the one day at a time but it’s hard.  Today is Sunday and all I need to do today is watch football. I don’t need to make any decisions today. I will think about tomorrow once it’s tomorrow.
What made you choose surgery and when will your surgery be?  Which surgical approach?
I hope you are doing well considering the circumstances, I know how difficult this whole thing is! That’s amazing you got all those opinions!  I only got the two opinions (Georgetown and UVA) but I’ve been limited by my insurance.  Both institutions gave me the same opinion though and they are highly rated doctors, I do feel like I’m in good hands at UVA but I am still terrified of the surgery  :-\
 

DanFouratt

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Re: New here and scared
« Reply #19 on: October 15, 2023, 08:58:37 am »
Dear Solotraveler,  I am happy for you that it did not grow. Enjoy the day and I hope your team wins
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

solotraveler

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Re: New here and scared
« Reply #20 on: October 15, 2023, 05:07:52 pm »
Thank you, Dan! I appreciate it and I hope you are doing well.

Roggae

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Re: New here and scared
« Reply #21 on: October 15, 2023, 09:19:39 pm »
Hi Solo. I paid out of pocket for two second opinions which some places do. $900 for UCSD and $100 for Barrow in Phoenix. I think House in LA is $300. It was worth it. I think translab is the kind of surgery. I am trying to get my surgery approved through insurance. Nobody local does this AFAIK. I know who I want (UCSD). Just gotta get it covered now. Aside from my tinnitus and slight hearing loss, I don’t have symptoms so I’m not suffering physically. Emotionally has been tough. It feels like a death sentence though I’m certain it’s not at least any time soon.

solotraveler

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Re: New here and scared
« Reply #22 on: October 16, 2023, 07:40:08 am »
Hi Roggae, I’m sorry for how you are feeling emotionally, I can totally relate. From shock, to fear, to grief and that feeling you described mixed in with some moments of hope and the big one for me is missing my old life. Sometimes I cry and cry and I just want my old life back so bad. I miss traveling and hiking and my last trip was in March, I went to Arizona mainly for Sedona but it snowed so I drove down to Phoenix to the Superstitions and I hiked the lower part of flatiron but then decided I shouldn’t try the whole thing alone.  I felt unsure and turned back.  I had no idea how my life would totally change a few months later.  But now my goal is to get through this, recover, and go back and hike Flatiron. I try to envision myself back out there on the other side of this thing and how good it will feel!
Have the doctors told you a timeframe for approximately how much time you have to make a final decision? Do you have time to think about things?
Can I ask what led you to finding the tumor? My tinnitus started 4 years ago, I immediately went to the dr but I was dismissed “it’s just tinnitus, lots of people get it”.  I never noticed any hearing loss.  I had bouts of dizzy spells for 6 years but I was always told I had a sinus infection or allergies.  Nothing can be done about it now but ugh I wish doctors had taken me more seriously years ago. But then again maybe it was better being oblivious all those years?

Roggae

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Re: New here and scared
« Reply #23 on: October 16, 2023, 11:42:51 am »
Surgery is not urgent so I do have time. At least a few months, but I’ve decided what my plan is. Now just need to find a way to make it happen. I made an appointment for hearing test because I knew it was declining and unilateral loss is a concern. I also met someone at a party and made a comment about going deaf. She told me her similar story which led to discovery of a VS and subsequent radiation. I got to thank her this weekend for urging me to get checked out. I like that you have a clear post-treatment goal.

Geoff

solotraveler

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Re: New here and scared
« Reply #24 on: October 16, 2023, 01:04:15 pm »
I’m glad it’s not urgent and that you got it checked out.  I wish you the best!

Roggae

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Re: New here and scared
« Reply #25 on: October 16, 2023, 07:30:23 pm »
You too. Please check in from time to time. I will too. Best wishes to you.