Author Topic: Post surgery  (Read 5459 times)

lisab66

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Post surgery
« on: August 14, 2016, 11:46:57 am »
Post surgery what is everyone's experience with getting back to "normal". We're there any huge changes that you didn't expect or that didn't get better with time?

Sheba

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Re: Post surgery
« Reply #1 on: August 14, 2016, 12:44:03 pm »
Hi

I am nearly 4 weeks post op, 1.4cm AN.  My docs recommended 6 weeks for recovery, so that's what I am taking. 

I was able to walk 5 miles on my 6th day post op.
I have had no pain really.

I am now SSD but that's not been too difficult (had good/not great hearing in AN ear preop), it's a little weird at times due to tinnitus.  I am trying ginkgo biloba to see if it helps with tinnitus (need to stay on it for months to see whether it will work.  it's good for you anyway.)

For second week post op, I was walking about 8 miles a day.
Since third week, I walk about 4 miles on a track and also do about 1 hour cardio (elliptical + incline treadmill) for stamina. 

I started driving short distances at 3 weeks post op.  I will wait a few more weeks before doing more challenging driving. 

I am not doing anything that may risk CSF leak - no bending, no weights etc.

My vision was weird right after surgery - some double vision/blurry vision  - gets slightly better each day to where now it's only noticeable when I look furthest to the right (i.e. moving eyes but not head).  I've been doing VOR exercises daily (nodding head left/right and up/down while looking at a letter on the wall and at arm's length), it seems to help.

I still have slightly "wonky" feelings sometimes when I move, but have not felt like I'd fall down.  I just have to think a little more depending where I am walking / what's going on.  The wonky feeling is also decreasing a little bit each day, I think I may forget about the AN surgery most of the time in a few months, with an occassional "tippy" feeling.

Net net I think I will feel good when I go back to work in two weeks, although I am a worried about maintaining high level of physical activity- I have a desk job and work typically a long day.  I believe physical activity is so important when healing from this type of surgery.  My plan is to do some activity in the morning before work, make it #1 priority.  And lots on the weekend.

Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

lisab66

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Re: Post surgery
« Reply #2 on: August 14, 2016, 01:04:27 pm »
What is SSN?

How was the post op pain?

lisab66

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Re: Post surgery
« Reply #3 on: August 14, 2016, 01:05:09 pm »
What is SSN?

How was the post op pain?

Which procedure did you have?

Greece Lover

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Re: Post surgery
« Reply #4 on: August 14, 2016, 07:51:30 pm »
My balance took longer than thought. Still not normal 3 months out. But I can do everything. 30 mile bike ride today. I feel great. It's mostly that some things still look weird with quick head turns.

The thing I didn't really expect was that I had a lot of anxiety and depression. It was pretty bad for a few weeks. Thus was nothing I had ever experienced before. I think it's common, but not always something that doctors prepare you for.

Do you have surgery  scheduled?
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 no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

lisab66

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Re: Post surgery
« Reply #5 on: August 14, 2016, 07:59:08 pm »
What is SSD?

How was the post op pain?

lisab66

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Re: Post surgery
« Reply #6 on: August 14, 2016, 08:00:10 pm »
Yes, 9/27

caryawilson

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Re: Post surgery
« Reply #7 on: August 14, 2016, 08:34:22 pm »
Wow.  Good question and I'm sure you will get every possible answer.

In my case, getting my cognitive ability back was the biggest struggle.  It took 4 months before I started to notice improvement in my cognitive ability.  Hard to describe.  I tell people it was like looking at the world through a periscope.  The brain would NOT process peripheral vision, hearing was limited, I was unable to process more advanced thoughts.  I was told this was due to the anesthesia, from the 17.5 hour surgery.  After, 7 months I returned to work.  Now looking back on it, it probably took 12 months for most of my cognitive ability to return.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Mpatrick

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Re: Post surgery
« Reply #8 on: August 15, 2016, 07:21:23 am »
Hi Lisa, my surgery was July 5 I had a 2cm AN removed from my hearing nerve which caused me to loose my hearing in the left ear. 6 weeks out I am still experiencing pain and stiffness with morning headaches. I can function most days better now and drive some but still not back to myself 100%. I just try to take it easy and increase activities a little more each day. I was hoping by now I would feel more normal but after calling my doctors they have assured me it will just take time. I have good days and some. Really bad days where I just want to sleep all day. I hope you are recovery well and I wish you luck
« Last Edit: August 19, 2016, 07:17:05 am by Mpatrick »
Surgical removal of a 2 cm acoustic neuroma on 7-5-16
sub occipital cranionatomy

alabamajane

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Re: Post surgery
« Reply #9 on: August 15, 2016, 10:48:57 am »
Lisab66,
SSD is single-side deaf which many of us are after surgery that cuts the hearing nerve such as the translab approach.  It will depend on many factors including which surgery approach you are having as to the certainty of you being SSD after surgery. It's not the "end of the world " though. Very manageable and options are  available to help.

Good luck with your upcoming surgery,,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Sheba

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Re: Post surgery
« Reply #10 on: August 19, 2016, 12:39:20 pm »
yes SSD = single side deaf -- I liked a post I saw on Facebook that a lady prefers to call it SSH = single side hearing - I feel like it's a small loss, not a huge one, and I will look into getting a hearing aid to pick up sound on the deaf side.

I had no pain - all I needed was a little tylenol or advil for some dull aches in first two weeks, then nothing since start of week 3.  I have spoken to people who did have a lot of pain at first, so don't be shy to tell the nurses what you need and stay ahead of the pain.  Not clear why some have pain, some don't - must be combination of how different people are wired, where the tumor is, etc.   Seems to happen even at the high volume centers so not strictly a surgical skill question. 
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.