Author Topic: MN AN Newbie - Post retrosigmoid surgery  (Read 3520 times)

Fuzzy

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MN AN Newbie - Post retrosigmoid surgery
« on: June 08, 2019, 10:32:29 pm »
Hi all

 I am 9 days post op and doing GREAT.  My AN was 12 x 9 x 8 mm, with "no contact of the left middle
cerebellar peduncle, no extension to the left IAC fundus, no labyrinthine extension is identified, no evident extension along the facial nerve". So going in I was in pretty good shape overall knowing the AN was small and not too invasive.  Surgery was at Mayo in Rochester MN by Link and Neff.  My understanding was Link did most of the surgery.  I went in for Prep about  6:00 AM and was out of surgery about 2:00 PM Thursday.  The surgery completely removed the tumor but i lost my hearing on the left side.  We knew there was a good chance of that going in though. In the recovery room and ICU the biggest problem for me was my shoulder from lying on my side for so long.  Several doses of Fentanyl they got it under control.  I spent one night in ICU and 2 more nights in a general room.  Going in I know the doctors want you to expect the worst so anything else will be better.  They told me to expect to be off of work for 3 months and I might be able to go back part time in 6 weeks.

I was walking laps around the floor by Friday and they shipped me home a day early.  No hard pain drugs after two days and just wrapped up my prescription of steroids.  Just taking some Tylenol now.  As I said I went home Sunday and within a couple days have been walking 2 to 4 miles a day.  I had a nice day outside most of the day today but think I need to cut back a little. I'm good at doing nothing, but need to slow down a little.  Very little facial issues.  Just a little weak and dribble a little if drinking out of a bottle or can.  From everything I've read the facial nerve needs a little time to come around.  I have not had the fatigue has been minimal, but maybe that has been the steroids.  we'll see what the coming days bring but I have not napped since the day I left the hospital.

Balance has been coming along great as well.  Lucky for me we live near a lake with a great place to walk and as I said I've been trying to get our at least twice a day for a 2-3 mile walk.  I couldn't have asked for a better week to start that rehab portion.  I still feel a little uneasy with fast and direct movements, but I feel stable overall.  I know on my Monday walk I was slow and deliberate and this morning it was relatively routine.  I hope that keeps up as well.

Last little tidbit to share.  As noted I lost the hearing I had on my left side but my right side seems to be working hard to pick up the slack.  I miss a lot of sounds coming from my left side, but my right side seems to picking up so much more.  I'm sure our brains over time learn noises that can be ignored for the most part, but I am picking up so much detail from right side now.  It's really neat and maddening at the same time.  Again, I'm sure over the next few months my brain will start filtering those noises out as well.

Thanks again all.  This is a great website and resource.

Fuzzy

chrisabbott

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #1 on: June 09, 2019, 03:36:28 am »
Thank you for letting us know how it went for you - I should be having my surgery four days from now and it helped me to see your post.  I hope you get plenty of nice weather for walking outdoors!
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

Fuzzy

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #2 on: June 09, 2019, 04:35:53 pm »
I'll be thinking about you and wishing you you the best.  Perfect timing today with a lot of clouds and rain which aligned with a little setback.  I think mostly the end of the steroids and them getting out of my body I have a little issue with some facial and eye control but nothing in the big scheme of things.  I am going with the steroids were doing a great job keeping inflammation down and now without the inflammation is bothering me a little.

Best of luck on the 13th and a speedy recovery.

bfoley

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #3 on: June 09, 2019, 06:52:22 pm »
Fuzzy -
Awesome results!  It was nice to hear about another success story at Mayo.  Headed down to talk to Dr Link myself tomorrow.  Please keep us informed of your recovery!

Fuzzy

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #4 on: June 20, 2019, 11:03:07 pm »
3 weeks post op today.  Things still going well.  After my last post things got a bit worse.  The facial and eye nerve got worse for the past 10 days or so.  They got me back on a lower dose of the steroids and that helped a lot.  My guess is there was some inflammation after i was originally taken off the steroids and the nerve issues were the result.  Eye working and blinking much better now.  Face is pretty good and about 75% of normal is my guess.  Otherwise I think I am still doing well and probably ahead of pace. 

chrisabbott

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #5 on: June 21, 2019, 02:52:06 am »
Good to hear from you - I think those steroids are a double-edged sword.  Seems like keeping inflammation down/steroids is definitely key to how you feel though -  more so than regular pain killers.

Keep us posted when you feel up to it.
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

Surfer

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #6 on: June 21, 2019, 07:43:18 am »
Happy to hear you are doing well.
February 2016- 4.6 cm removed at Sloan Kettering NY by Dr. Gutin and Dr. Selesnick.  Residual left behind to preserve the facial nerve. Two year MRI indicates a shrinking of the residual. Three year MRI indicates no change in size.

kip

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #7 on: June 22, 2019, 03:39:29 pm »
Fuzzy,
I am so glad to hear about your awesome recovery! Please keep us posted.
Blessings~   ;)
 

JKnotdobbins

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #8 on: February 19, 2020, 11:23:15 pm »
So glad you’re doing well Fuzzy!
Diagnosed left AN in August 2017
8/17 measured 14x18x13mm
Located in CP angle

Fuzzy

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Re: MN AN Newbie - Post retrosigmoid surgery
« Reply #9 on: August 25, 2020, 07:41:37 pm »
Hi everybody, it's been a while.  I am about 15 months post op.  For the most part things are going great.  Still no hearing on the left side but I did not figure it was going to magically reappear.  Balance is pretty darn good everything considering.  i rode my bike for the first time a couple months ago and still feel pretty shaky doing that, but it also might have been the very crowded path along our lake with all the Covid exercisers.  The biggest issue, which is not the worst thing in the world, is my hearing in my good ear.  As I noted last year the good ear is now very sensitive to noises and it still is.  If i go to crowded places, especially indoors, the noise really gets to me.  I could try a hearing aid that limits the sound, but that would mean I miss even more than I do now.  With the whole pandemic going on I have not spent a lot of time in indoor crowded places though so not so bad the past few months.

The deaf thing does have a lot of drawbacks, but again, I am still here.  My wife especially has a hard time remembering that I do not hear well.  She will say things and think I ignore her or when I pause or turn down the TV or radio so I can hear her better she thinks I'm going overboard.  Now with everyone wearing masks it makes it really hard to add in words from reading lips.  Again, small price to pay for not having something growing in my head.

I meant to write this as a one year update, but as fate would have it I had a heart attack and needed to get 4 stents the same week as my AN surgery anniversary.  I was lucky the heart attack was 'minor' and being a good guy I did not go into the hospital for another day to get checked out.  100% blockage in one artery and a long pinch in my 'widow maker'.  4 stents (2 each in 2 arteries)and 36 hours later they sent me home.

I get out and walk about 4 miles 4-5 times a week so that helps with both maintaining my balance and the cardiac rehab.

I hope everyone here is doing well and making the best of life.  It is short and we need to live it to the fullest.

Fuzzy