Author Topic: Three weeks post-op retrosig easier that expected  (Read 5352 times)

gunns

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Three weeks post-op retrosig easier that expected
« on: August 15, 2017, 04:31:33 pm »
Three weeks Post-op now and doing pretty good.  I was in the hospital for only two days.  One day in ICU and one day in a regular room.  I was doing so well they saw no point keeping me any longer.  I could get up and walk, climb stairs and function independently.  Spent 10 Hours last Friday doing yard work with backpack blower, lawn mower, lawn tractor, weed wacker, and using our three-wheeler with a trailer to haul yard debris around.  At the end I was tired but it was a good tired.  I drove to  my doctor’s appt today without any trouble.  I do a lot of walking and stair climbing.  Our home is three stories so I take advantage of the two flights of stairs.  I'm really pleased with how my balance is coming along

On the other side of the coin before last Friday I noticed my left eye (AN side) was drying out and I couldn't blink with that eye nor could I make it close be itself by squinting.  The only way I could close it is if I closed both eyes at the same time  Also the left side of my face had lost enough muscle tone that it was beginning to sag ever so slightly.  I called my surgeon and was advised that this can start a few days after the surgery and should resolve it self in time.  The most likely culprit was swelling.  I was given a prescription for prednisone to help with the swelling, eye drops for daytime use and ointment to apply before bed time.

I wasn't aware that my eye was probably staying open while sleeping so I gave it a test.  I closed both eyes and then relaxed them and sure enough my left eye immediately slowly opened fully while my right one stayed closed.

On another issue I have questions concerning hearing aids for single sided deafness (SSD).   Unfortunately I lost all hearing on my left AN side permanently as I'm told.  I was informed by the audiologist of all my options and was advised that the Bi-Cros best fits my situation.  My good (right) ear has a fair amount of high frequency loss.  So that unit is on my short list but have problems with behind-the-ear (BTE) aids.  I'm very active even at 69 years.  I was also giving thought to just one high quality in-the-ear (ITE) hearing aid for my right ear only in hopes it could overcome some of the head shadow effect.  I have since become aware that Phonek makes an ITE version.  Here are my questions:

1.    If Phonek indeed makes ITE Bi-Cros aids has anyone tried them and how well do they work?
2.    Can you get them with "T-Coil" installed?
3.    Can you get them and a control app for your iPhone?  I did find a Phonak app in the app store but it did not get good reviews.  I was hoping there might be others.

Any help is greatly appreciated!
Gunns

Sailfish

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Re: Three weeks post-op retrosig easier that expected
« Reply #1 on: August 19, 2017, 02:48:34 pm »
I call the two surgery options RS and TL for short.  I see you had the RS and still lost hearing in that ear.  Did you choose RS because they thought they could preserve your hearing?  What size tumor did you have? 
6/23/17  3.2cm  Facial numbness and tingling  Tinnitus 2012 
Surgery with Drs. Cunningham and Zomorodi at Duke - upcoming

gunns

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Re: Three weeks post-op retrosig easier that expected
« Reply #2 on: August 19, 2017, 04:34:06 pm »
Yes.  Originally it was to be a TL but the day before the surgery they did their own audio-gram.  The last one was done by the VA.  I still had good word recognition in the AN ear so they hoped to save it and went with the RS.

Sailfish

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Re: Three weeks post-op retrosig easier that expected
« Reply #3 on: August 19, 2017, 05:10:25 pm »
My word recognition is 72% in the AN ear but I really can tell a big drop off in my ability hear.  In a group setting with lots of conversations I have a lot of trouble.

I have chosen a team of surgeons at Duke.  One surgeon suggesting TL and the other RS because feels there's a good chance to preserve what I have left. 

Based on everything I'm reading seems to be extra risk with RS.  Certainly the toughest decision I've had to make.
6/23/17  3.2cm  Facial numbness and tingling  Tinnitus 2012 
Surgery with Drs. Cunningham and Zomorodi at Duke - upcoming

gunns

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Re: Three weeks post-op retrosig easier that expected
« Reply #4 on: August 19, 2017, 05:57:29 pm »
It's my understanding that with TL the hearing in the AN ear is sacrificed -gone for good.  The RS is used when there is usable hearing in the AN ear and they want to attempt to save it.  That's why I went the rout that I did with the RS.  I still had good word recognition in my AN ear but needed a fair amount of amplification (Hearing aid).  But sometimes things don't work out as you want.

I wish you luck man!  I'm glad we at least tried to save the hearing.  At least that dirty little booger is out of my head!!

Fair winds and a following sea Sailfishboy!

ANSydney

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Re: Three weeks post-op retrosig easier that expected
« Reply #5 on: August 19, 2017, 06:42:14 pm »
One surgeon suggesting TL and the other RS because feels there's a good chance to preserve what I have left. 

An ENT will suggest TL and a neurosurgeon will suggest RS for your particular case. What is recommended is not due to what's best for you condition, but who you speak to.

gunns

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Re: Three weeks post-op retrosig easier that expected
« Reply #6 on: August 19, 2017, 07:05:15 pm »
In my case the ENT or Otolaryngologist (Dr. Friedman @ USC Keck)was originally suggesting the Trans Lab but after ordering a new current hearing test and seeing the results he wanted to try and save the hearing in my AN side.  His original suggestion, Trans Lab, was based on answers to questions he asked me.  The results of my hearing test changed his mind.  He never tried to push me either way.  He provided the info and the decision was mine.  Again, it's my understand that with the Trans Lab  you WILL loose the hearing in your AN ear.

During the months leading up to my surgery I did a lot of research on the different surgeries but I have to admit that I'm a newbie to this and could be wrong.

ANSydney

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Re: Three weeks post-op retrosig easier that expected
« Reply #7 on: August 19, 2017, 07:57:10 pm »
Yes, translabyrinthine approach intentionally destroys hearing. Ask you doctor how many retrosigmoid operation he has done and what are the his chances for retaining hearing (and avoiding facial nerve damage).

LakeErie

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Re: Three weeks post-op retrosig easier that expected
« Reply #8 on: August 20, 2017, 05:01:46 pm »
Gunns, if you have incomplete eyelid closure, seeing an ophthamologist would be prudent. Even 2 or 3 mm exposure can lead to corneal abrasions, I know from experience. A tear duct plug was helpful in keeping my eye lubricated until the lid closure problem resolved.  The plug was easily removed when no longer needed.
Most post AN surgery patients taper steroids while in hospital and after discharge. The result can be delayed complications from the surgery when the steroid stops. Were you on steroids after surgery? After my microsurgery in 2011 I experienced delayed facial weakness that responded quickly to Decadron and, as mentioned, I had facial paralysis 3 months following GK, so again delayed complications.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

gunns

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Re: Three weeks post-op retrosig easier that expected
« Reply #9 on: August 21, 2017, 03:53:40 pm »
LakeErie,
I didn't know they could plug the tear duct drains.  What a great idea!  My eye and facial weakness started about a week or so after surgery and I wasn't on steroids post-op.  I was prescribed prednizone when the problems first showed up.  This Thursday will be week four post-op.  The facial weakness seems to be getting better.  Today was the last dose of prednizone but I'm still using the ointment at bed time and frequent use of eye drops during the day.  I see my neurosurgeon on Thurs day and have a lot of questions for him.

Up until three days ago I felt like I was making great improvement each day on the balance/wonky headedness.  The last three days have been a disappointment.  I seem to be slipping backwards but i still have a positive attitude about it all.  I wouldn't change a thing.  I'm still glade I had the operation.

LakeErie

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Re: Three weeks post-op retrosig easier that expected
« Reply #10 on: August 21, 2017, 06:28:22 pm »
Yes, they are called punctal plugs. I had one inserted in the inside corner of my eye, it is silicone and about the size of a grain of rice.
Had no sense it was there and was easily removed.
Regressing a little in recovery is not unusual. Patients are often so glad to have the surgery behind them they initially feel better than they really are. Surgeons refer to this as post surgical euphoria. My best guide in recovery was my own body. I found it told me when I did too much. In my own case; I found it better to rest periodically and to do it before I felt tired or felt the well known wonkiness. Recovery is not a race and takes its own time, but it does come eventually
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

gunns

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Re: Three weeks post-op retrosig easier that expected
« Reply #11 on: August 21, 2017, 06:51:08 pm »
Yes, they are called punctal plugs. I had one inserted in the inside corner of my eye, it is silicone and about the size of a grain of rice.
Had no sense it was there and was easily removed.
Regressing a little in recovery is not unusual. Patients are often so glad to have the surgery behind them they initially feel better than they really are. Surgeons refer to this as post surgical euphoria. My best guide in recovery was my own body. I found it told me when I did too much. In my own case; I found it better to rest periodically and to do it before I felt tired or felt the well known wonkiness. Recovery is not a race and takes its own time, but it does come eventually

What you say makes sense.  Guess I need to hold back on my activities.  A week after release I put 10 hours of work non stop in my yards and the following Friday another 10.5.  I was tired but I felt good.  And it wasn't the use of pain killers either.  Since release I've only taken one.  I've had four major back surgeries and have learned that some pain is good.  It makes me behave and not get too carried away with my activities.  I just find it hard to sit around.  I always have to be actively doing something.  Your advice is acknowledged and taken to heart.  I'll back off a bit - - for now at least!  LOL!  Thanks for your input LakeErie!

Sailfish

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Re: Three weeks post-op retrosig easier that expected
« Reply #12 on: August 22, 2017, 05:08:51 pm »
Do they always prescribe steroids after the surgery?  I'm not very knowledgeable so can you tell me what they are for?
6/23/17  3.2cm  Facial numbness and tingling  Tinnitus 2012 
Surgery with Drs. Cunningham and Zomorodi at Duke - upcoming

gunns

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Re: Three weeks post-op retrosig easier that expected
« Reply #13 on: August 22, 2017, 05:34:36 pm »
Do they always prescribe steroids after the surgery?  I'm not very knowledgeable so can you tell me what they are for?

I don't know if they normally do.  In my case they didn't initially.  About one week post-op I began  experiencing some left facial nerve issues.  Slight runny nose (left nostril only) could't wink left eye,  eye would not stay closed while sleeping, not enough tear supply to keep eye moist, left lower lip wouldn't seal against a coffee cup while drinking and left side of my face was sagging slightly.  I contacted my surgeon's office and was told that this was not uncommon post-op.  I was advised that it was probably swelling around the facial nerve and that it would most likely resolve itself in time.  They prescribed prednizone (10 day supply) to help with the swelling and it seems to be working.  I can now drink from a cup without a straw.  I still can't blink my eye shut but I can almost close it by winking.  If blinking both eyes at the same time it's almost normal.  Hope this was helpful.

LakeErie

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Re: Three weeks post-op retrosig easier that expected
« Reply #14 on: August 23, 2017, 01:57:52 pm »
Sailfish, many neurosurgeons use steroids, Decadron specifically for brain issues, immediately after surgery to reduce any swelling and / or inflammation of the cranial nerves. The swelling / inflammation can cause complications.
In my case I had IV steroid administered during the surgery itself which continued till discharge when I began an oral Decadron taper for the first weeks at home, a taper is a reducing dose over time.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017