Author Topic: Good results...AN stories  (Read 4070 times)

jeninla

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Good results...AN stories
« on: September 12, 2014, 05:06:52 pm »
Hi all,

I am now 5 weeks post op and I wanted to checked in to give an update.  In the past few weeks, I have gotten some PMs from other members of the forum asking about my recovery and have found some comfort in my story.  I wanted to share my recovery and so far it has been a good outcome.  Sorry if I repeat my story a bit since some people don't like to search back to my original post. 

A quick update on my stats, I had a 2.0 AN tumor.  I had great hearing prior to surgery, and only slight numbness in my chin.   I was given 60% of saving my hearing nerve by Dr. Slattery.  3 weeks after my diagnosis, I had retro sig surgery with Slattery/Schwartz at House.  Choosing them was a no brainer for me, because they did so many of these surgeries and they know how to assess and deal with any type of situations.  After surgery, I was told they saved both my hearing and facial nerves.  I didn't have much facial weakness, just a slight crooked smile.  I was able to hear right after surgery but not well.  I didn't have any leakage due to the fact that Dr. Schwartz decided to drain my spinal fluid for a few days to ensure that there was no issue.  Personally I think this is why I think the House team is so great.  They have so much experience with this that he saw I have a more "wet" bloody surgery and thought that this was the best procedure to ensure no complications later.  My time in the hospital was pretty smooth since the nurses and docs were great at taking care of me.

Week 2-3 were difficult since I had intense nausea followed by nerve pain when I returned home.  I'm not going to lie but those were the worst weeks for me.  But I was finally given meds (after trying a few things) that helped with both situation and eventually they subsided.  Despite the good recovery I feel now, I don't want to downplay the difficulty of the initial recovery.  My family was amazing in taking care of me. 

Week 4 to now:  I am now only on Gabapentin which is a anti seizure med for the nerve pain and nothing else.  I have no pain, no nausea.  I was able to drive this week.  I have returned to work but in a more relaxed capacity.  I can hear decently well.   I know it is not 100% yet but it is pretty good.  I can tell it is improving everyday.  I have some tinnitus and alittle bit of stuffiness in my ear sometimes but it is really not bad.  My slight facial weakness is also getting better.  I wasn't able to wink a week ago and now I can.  My smile is no longer crooked and looks normal.  I think I will be able to stop Gabapentin soon but I don't have any side effects from it.  All in all, I feel pretty normal now.     

I have my 6 weeks appt with House next week to check my hearing and will post my results.  Anyway, this is my story and I want to post something positive because I know when I was feeling better, I stopped posting on the forum.  I do think that there are positive results and I hope more people will share them. 

Jeninla

 

discovered 2.0 cm 6/2014
retro sig 8/5/2014 with HEI, Schwartz/Slattery
total removal
hearing, facial nerves preserved!
Full recovery with no headaches

ANGuy

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Re: Good results...AN stories
« Reply #1 on: September 13, 2014, 06:07:05 am »
I'm so glad you had such great results and thanks for posting them!  What worked for the nausea and what didn't?  I was dx a few months ago and am WW while a figure out what to do.  One of my biggest fears is vomitting non-stop.  I've had a few attacks of non-stop vomiting which is what lead to my dx.  Antivert and a few others worked after a few hours but those hours were miserable, I mean really bad non-stop dry heaving.  An ER doc wrote me a rx for Zophran.  I felt nausea coming on and chewed up a Zophran at home.  It was instant in it's effectiveness.  Even before I finished chewing it up, I knew I wouldn't vomit even once.  I was still dizzy while waiting for the antivert to kick in, about 2 hours, but at least I wasn't vomiting.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

jeninla

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Re: Good results...AN stories
« Reply #2 on: September 13, 2014, 12:17:36 pm »
Hi ANGuy,

The first week back from surgery I was on diminishing doses of steroids.  That really helped in the beginning.  I barely needed the Zofran that was prescribed for dizziness.  However by day 4 or 5 when I'm only on one pill of steroids, I was very nauseous and sick.  Zofran helped for an hour then I was back to being dizzy again.  My doc finally gave me another round of steroids for another week and that REALLY helped.  By the middle of the next round, my nausea was totally manageable and I knew I didn't need the steroids anymore.  I just used Zofran only very occasionally the next week.  Now I don't use anything for nausea since I no longer feel dizzy.  I think my body finally got used to it. 

I know it is a bit different than you.  However, I think since you are already feeling nausea prior to surgery, you will recover more easily after surgery.  The doctors say that those whose balance nerve was compromised already, their brain will already had time to get used to it. 

Jeninla
discovered 2.0 cm 6/2014
retro sig 8/5/2014 with HEI, Schwartz/Slattery
total removal
hearing, facial nerves preserved!
Full recovery with no headaches

ANGuy

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Re: Good results...AN stories
« Reply #3 on: September 13, 2014, 03:38:41 pm »
Thanks for the good info you are providing.  My balance was tested and I was told that mine is 50%.  All of my symptoms fluctuate.  The vast majority of the time I have no symptoms other than tinnitus which I have had my whole life, although it is worse now.  MY balance/nausea issues started 8 years ago and I have an "attack" once or twice a year.  My AN is 1cm.  It's nice to know I can get by with a Zophran here and there if I have an attack while I get further MRI's and decide what to do.  I had my first MRI back in June and my second will be in December.  One of my worries about surgery is that I would be in some kind of multi-week hell of unmitigated vomiting and I was wondering how reliable Zophran was.  So far, it seems in your and my cases, it works well.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

raji83

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Re: Good results...AN stories
« Reply #4 on: September 18, 2014, 11:37:16 am »
feeling so good after reading your success story. I am scheduled on 8th oct in NYU.

jaylogs

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Re: Good results...AN stories
« Reply #5 on: September 18, 2014, 02:40:49 pm »
Hey Jen, first of all I just wanted to say a belated welcome to postie land! :)  Sounds like your recovery is right on par.  You'll just have to listen to your body and take it easy when it tells you to do so.  You went back to work fairly soon after your surgery so just take it easy.  A lot of people do suffer from dizziness for an extended period of time afterwards so you can count yourself one of their lucky club members!  Thank you for sharing your experience, so that others who are only just now beginning to do their own research will able to see just how different each outcome is and that is why we always say on here "your experience may and WILL be unique and truly your own!".  Keep sending us updates once in a while, thanks again!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

jeninla

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Re: Good results...AN stories
« Reply #6 on: September 18, 2014, 07:19:24 pm »
Hi everyone,

I just want to share the outcome of my 6 week post op exam.  I'm so excited to say that my AN side hearing is now in the NORMAL RANGE!!!!  Dr. Slattery was very happy with my recovery and I am now off of all meds...  and no nerve pain!

Jay, thank you for your message.  One thing about returning work so others will know.  I own my own company and it is downstairs from where I live.  So "returning" to work in the beginning only meant I walked downstairs to say hi to my staff but not exactly "working."  Now 6 weeks post op, I do feel well enough now to be working more full time but I also have the added benefit of taking a nap almost everyday after lunch since fatigue is still a factor.  I agree on the taking it easy.  I was so tired especially when I was on Gabapentin.

Good luck mot83 and CS!  Both of you have surgery in October.  Please keep us posted and pm me if you have any questions.



discovered 2.0 cm 6/2014
retro sig 8/5/2014 with HEI, Schwartz/Slattery
total removal
hearing, facial nerves preserved!
Full recovery with no headaches