Author Topic: New guy  (Read 11151 times)

golfguy49

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Re: New guy
« Reply #45 on: November 12, 2019, 08:12:17 am »
Thank you.  I have not heard of those docs before, and it is always good to hear of successful surgeries with docs I have not heard of before - to me, that has an implication that generally the quality surgery options are broadening.  It's not just a few surgeons out there who can do this...there are many who will do a great job, but that does not mean homework is not needed on a patient's part.  I also read medical journals and articles that say "saving" hearing through procedures can be a little misleading...because over time is is likely to degrade anyway.  Would love to hear from someone who had middle fossa or retro 20 years ago and still hears as well today in that ear.
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

golfguy49

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Re: New guy
« Reply #46 on: February 06, 2020, 10:54:39 am »
Had my retrolab surgery Jan 30.  6 days in hospital. 100% tumor removed, currently deaf in that ear but hope some hearing will return after blood dries and canal clears out.  Technical indications during surgery are that hearing is still there.  Balance currently off but can walk without a walker (but need to be guided by a wall or person).  Tinnitus remains at about the same level - again, I hope that gets better as healing progresses.  My left side feels very congested right now, not just deaf, so I hope that feeling improves.  No facial issues.  Left eye seems a little light in closing, but it does close and I have no trouble sleeping.  Start PT rehab Monday to improve balance.
« Last Edit: March 23, 2020, 11:33:36 am by golfguy49 »
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

chrisabbott

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Re: New guy
« Reply #47 on: February 06, 2020, 04:22:53 pm »
Good to hear that your surgery appears to have gone well - fingers crossed that you were able to save your hearing.  If you find you have lost some, don't hesitate to look into hearing aids - I got to use them before losing the rest of my hearing and it was fabulous.  Five of my friends went and got their hearing tested; four of them got hearing aids and all are thrilled with the difference it is making in their lives.

I also hope you find the PT helps you manage the balance issue quickly - I'm blessed with some ability to instinctively deal with it.  Apparently years as a gymnast did that (even though I stopped at 16, and I'm now 57!).  Only places the world swirled on me post-op, was in large parking lots - I'd just step once sideways toward the "lean" and stare at something vertical and straight like a lamp post.  Worked a treat, but the few occasions it happened, had me thinking how hard it must be for people that get dizzy/unbalanced feelings.
Strange tastes, facial numbness symptoms led to MRI 3/2019: 2.4 x 3.2 x 2.6 cm VS on left side
Left hearing went 4/2019
Translab 06132019:  1.4 x 2.4 x 1.6 cm residual stuck to facial nerve & brain stem
MRI 12122019:  1.6 x 3.2 x 2.3 cm
Translab 01132020:  0.1 x 0.75 x 0.57 + 1.5 x 0.5 cm
GK next

golfguy49

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Re: New guy
« Reply #48 on: February 09, 2020, 06:59:23 am »
Thanks.  I would love the opportunity to use a regular hearing aid.  Much better than BAHA or CI, though I am open to those as well, if necessary.  Hearing is the most important thing compared to vanity concerns of the devices, as far as I am concerned. 

3 days after coming home.  Double vision has kicked-in now after lying down or sleeping.  This started 2 days ago. Usually takes getting up and walking around (with help) for 15-30 minutes and then my eyes seem to reset and it goes away.  But as long as I don't get up and walk, it remains.  Head still feels very heavy and wonky.  Tinnitus is loud and feels like it has transferred to the other side as well, which I am hoping (like a head cold), means I still have some swelling and congestion, and once that subsides, maybe things will open up more.  Still no really good sign of remaining hearing on the operated side.  Balance is a little better when walking - not ready to drop my helper yet, but I can see that happening in coming weeks as I start PT in earnest.

March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

golfguy49

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Re: New guy
« Reply #49 on: March 23, 2020, 10:09:45 am »
I am 53 days post-op.  I feel pretty good most days, though some days I feel fatigued and more dizzy.  PT told me not to come back because they have done all they can for me and I hit all my goals.  I can drive, though I have not had much use for it with the coronavirus lockdowns.  I have no headaches (unless I push it too much) and the congestion I felt for the first 4-5 weeks post-op has cleared up, so my head feels normal weight again.  I still have some dizziness when walking but each day gets better in micro ways.  Tinnitus dropped back down to pre-op levels about 10 days ago and that is much more manageable, and I only get rushes of increased volume after long conference calls.  I do office work and work from home, and I started back 1 week post-op at about 10%, and each week I increased about 10%, so I am now able to work full-time with some long breaks sneaked-in during the day.  I could probably even travel and manage customer meetings if I needed to, though I know that would fatigue me.  Still working on my stamina by walking 1-2 miles each day.  Ok, so now for the hearing:  the doctor, of course, was right.  While I had great hopes that most of the hearing would return after my congestion went away, it did not.  I did get a little improvement and a cheap Amazon hearing amplifier has been useful when I need it, though I am anxious to get to an audiologist and test some quality hearing aids to see how they work for me.  I don't see the need for BAHA or CI in my case.  My surgery side helps enough with the other side to function just fine, but I will be avoiding loud places (concerts/sporting events) perhaps for the rest of my life to protect my best ear.

If I can get out of this with 100% of the tumor gone (MRI in 30 days to confirm what doctors said immediately after surgery), balance back to normal, no headaches, no facial nerve issues, and a simple hearing aid to give some help when I want/need it, I will feel like one of the luckiest AN people out there.  Plus I have a bad-ass scar to fabricate some stories about as an icebreaker.
« Last Edit: March 23, 2020, 11:32:55 am by golfguy49 »
March 2018: 10 x 5 x 5 mm AN diagnosed April 2018.  October 2018: 12 x 5 x 5 mm.  Considering surgery in early 2019.
October 2019: 14 x 5 x 5mm.  Surgery scheduled for late Jan 2020.
January 2020:  Surgery at NW Hospital in Chicago area done by Drs. Fishman and Brayton

Greece Lover

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Re: New guy
« Reply #50 on: March 24, 2020, 01:46:56 pm »
Thanks for the update.  Sounds like, all things considered, a very good outcome. I wish you continued luck in your recovery.  As time moves on, the improvements become more incremental. but they do continue.  Good 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!

 


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