Author Topic: New guy  (Read 13957 times)

jami

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Re: New guy
« Reply #30 on: November 27, 2018, 09:13:07 pm »
Sorry to hear about the latest, but you sound like you are in good hands. All of what you mention matches what I was told as well. I never got to go through the watch and wait period - diagnosed in June, surgery in August (and it felt like a lifetime). If you are an ANAUSA member, I strongly recommend watching the Oct 17 webinar "The Patient-Centered Approach to Acoustic Neuroma". It felt like my months of research / google / dr appts were ALL covered.

For what its worth, I had to make a choice between "maybe" preserve some hearing but risk the facial nerve, or lose the hearing (and balance) and preserve the facial nerve. I went retrosigmoid, lost hearing and balance but face was in good shape by the time i went back to work @ 6 weeks. The hearing is tough, but I work with people with single sided hearing (its a random thing) and life is better without the neuroma than with the hearing.

Its different for everyone, take advantage of the time now to be as ready as possible for the surgery. I started walking 5 miles / day to prepare, wanting to be as healthy as possible. No CSF issues (yet?), no headache issues (yet?) BUT my life will always be a bit different.  BEST of luck!

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

kestes

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Re: New guy
« Reply #31 on: November 28, 2018, 10:54:19 am »
Hi, I just had GK 3 weeks ago for 14mm which I guess translates to about 1.4 cm or less, 24 hour tinnitus, balance issues and fatigue and about 10% hearing loss.  I just turned 51 and my husband and I are avid hikers, mountain climbers, runners, bikers, etc.  I chose GK because I did research and felt comfortable with the 50 years of procedures that doctors have done, PLUS I wanted to continue my lifestyle.  As a matter of fact, we leave next to hike THe Wave in Kanab, Utah, and are doing hikes in Zion and Bryce - all within one month of GK.  I have no idea how my hearing will be in years to come or if my symptoms will get worse.  I chose one of the best doctors Dr. Jason Sheehan UVA and Gamma Knife clinic in the country - actually many people from all over the world come to him.  I trust his experience and plan to live my life to the fullest as I still will get mris oftern.  I do not worry one second about the AN and what its future will be, if I lose my hearing I will get a hearing aid.  My AN grew from first diagnosis and I decided to go with treatment before it grew any larger.   

There are several facebook groups to join as well that are soooo informative and tons of people have had Middle Fossa.  That was suggested for me because I still have hearing, but I was not a fan of surgery when I could take a least invasive route first.

Good luck with your research and whatever you decide for you!

 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

golfguy49

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Re: New guy
« Reply #32 on: November 28, 2018, 03:52:28 pm »
Thank you for the replies, kestes, and jami.  I have now watched the webinar and that has added some things to my thought process.   This is not an easy decision without certainty of some hearing preservation.
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

lablove

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Re: New guy
« Reply #33 on: December 27, 2018, 08:52:14 pm »
Did you find out if the 2mm growth is within standard of error?

golfguy49

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Re: New guy
« Reply #34 on: December 28, 2018, 09:26:49 am »
The last 2 surgeons I spoke with asked if the MRI was done on the same machine.  It was not.  I have 2 hospitals near me that are owned by the same network, so they send me to whichever one has the best schedule availability.  My most recent MRI was done on different machine in a different hospital than my first MRI.  I wish I had previously understood that using the same machine would be important.  Those surgeons both said this most recent difference "could" be due to differing machines, and not true growth.  They studied both scans in front of me very closely and they could not say for sure this represents "growth".

My balance issues have really improved over the past 45 days or so.  I haven't felt this good in probably 18 months.   I can even do some moderate exercise.  My plan is to do another MRI in May (on the same machine as my MRI from October) and see if growth is more evident.
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 #35 on: April 25, 2019, 08:00:32 am »
My latest MRI says the tumor is 12.6mm x 7.3mm.  That is pretty substantial growth in 1 year (from 10mm x 5mm).  I am planning to schedule surgery with my Dr. when I meet with him in 10 days or so.  My balance remains quite good and and I have been able to do a lot over the last 6 months that I could not do in the year prior, so I hate to risk/ruin this run of feeling so good, but I know there is a ticking time bomb if I do nothing.  Time to act.
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

lablove

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Re: New guy
« Reply #36 on: April 27, 2019, 09:58:40 pm »
I am wishing for you a great outcome! Let us know your surgery day & I will specifically pray for you & your recovery.

notaclone13

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Re: New guy
« Reply #37 on: April 28, 2019, 08:31:56 am »
Please keep us in the loop regarding your surgery. Wishing you the very best outcome possible.

golfguy49

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Re: New guy
« Reply #38 on: October 28, 2019, 05:17:33 pm »
I am scheduled for surgery in early December.  My latest MRI showed further growth, with tumor now around 1.4cm.  That's about 40% growth in 18 months.  Middle Fossa no longer an option (too dangerous), so we are going with Retrolab.  Doc says 50/50 on saving some hearing.  NW Medicine in Chicago.
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

ANSydney

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Re: New guy
« Reply #39 on: October 28, 2019, 06:28:10 pm »
Rather than retrolab (which can be confused with translabyrinthine), I think you meant retrosigmoid.

Good luck with saving hearing.

golfguy49

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Re: New guy
« Reply #40 on: October 28, 2019, 06:51:49 pm »
It is retrolab.  Not a lot of docs do it, but I don't know why not.  It is basically a hybrid between translab and retrosigmoid that allows for possible hearing preservation (whereas translab takes the hearing) but doesn't require such a large movement of the brain to get to the tumor.  My doc told me about it 5 months ago and I've researched it a bit.  He performs all possible AN procedures, including GK, so he went through all options and discussed the upside and downside of each.  This is a good option considering Middle Fossa is no longer a safe option.  I let too much growth occur in the last 18 months, so Middle Fossa is out because the artery "behind" the tumor is even that much less visible now.
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

ANSydney

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Re: New guy
« Reply #41 on: October 28, 2019, 08:48:02 pm »
Thanks golfguy. It's good to hear about this approach. Thanks for updating my knowledge.

mistasteve

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Re: New guy
« Reply #42 on: November 03, 2019, 02:31:14 pm »
Hi golfguy,

I'm about your age (49) and had translab in July. My hearing was about shot by then so the SSD while worrisome was not going to make a huge difference.

I'm now coming up on 4 months out. My experience was 'good, but with challenges'. Good because the surgeons were excellent, so there were no facial paralysis issues or CSF leaks or such. I was not ready for the challenges around balance and fatigue, though. As I'm writing it's Sunday afternoon and I'm feeling pretty wiped out. That said I started a weightlifting program a couple months back, and I'm definitely able to do it without room spins, and 'hope is alive' I'll be able to get back to the level of running I was at pre surgery, though I'm not there yet.

Overall I'm glad I did surgery, I'd say. Tinnitus was really bad before, now I don't have it. I was having balance and fatigue issues before - I just didn't know to make the connection. I was having pains in my face due to the facial nerve being increasingly compromised, now I know I'm past the danger there. I'm hopeful that although this is a slow process, although I'm at a 'new normal', I'll still be able to do stuff and feel gradually more and more 'like myself again'. Had I not had surgery, who knows, misfortune might have found me in a place where, some years in the future, I didn't have good insurance or a reasonably understanding employer. Everybody's experience is different, just throwing my experience into the mix. Definitely wish you well on your journey and that you get the best care for your particular case.

golfguy49

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Re: New guy
« Reply #43 on: November 07, 2019, 03:25:45 pm »
Thank you for your comments, and it sounds like you are pretty happy with the overall results.  Could I ask what hospital you went (don't need to name the docs if not comfortable doing so)?  I don't have any facial nerve indications at this time and my Dr has totally downplayed the risk there - he says he just doesn't have those types of issue with his patients.  Very interesting that your tinnitus went away - many people I speak to (such as in support groups) would gladly give their hearing in one ear to get rid of the tinnitus in that ear.  For some, it seems unbearable, and I feel for them.  Mine is always there, but I have trained myself to focus on it very little.  Thanks again for posting.
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

mistasteve

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Re: New guy
« Reply #44 on: November 11, 2019, 08:41:40 pm »
Sure, no problem. It was Dr. Rick Nelson (ENT) and Dr. Mitesh Shah (Neurologist) at Methodist Hospital in Indianapolis.

With the tinnitus there's a discussion on one of the Facebook groups now - some people have less after surgery, some have more. Again guess I had a combination of luck and very skilled surgeons.

 


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