Author Topic: 17 days post surgery. First post and a question please  (Read 4337 times)

Kevinmelbourne

  • Newbie
  • *
  • Posts: 2
17 days post surgery. First post and a question please
« on: January 02, 2017, 05:09:17 pm »
Hello friends.
My name is kevin and i am new to this forum. Thank you for keeping this community going, it is an unbelievable help.
My story.
I am am a male, 38, got diagnosed with a 4 cm AN, left side about 6 weeks ago. Surgery was quickly scheduled. My AN was also quite cystic in nature. I had surgery on the 17th of December. The surgeons reported that my facial nerve responded extremely well, and immediately post surgery my facial function was great. I lost my hearing in my left ear.
Over the first three days post surgery my facial weakness picked up, then got better. I was discharged day 10.
Back home now and ive found in the last four or five days my mouth  is getting extremely tight. Its hard to open it wide enough to eat. I have "good" movement of my eyebrows, cheek muscle and can manage a half decent closed mouth smile.
Has anyone else had this happen so close after surgery? It seems to be quite back and forth in my case. Should i be calling the neurosurgeon? Its hard to know what the facial nerve, which was reported to be well preserved, is trying to do with the left side of my mouth..and although i am quite centred l have found myself panicking a bit.
4 CM , half cystic. Retro sig on 17.12.16

Enri

  • New Member
  • *
  • Posts: 32
Re: 17 days post surgery. First post and a question please
« Reply #1 on: January 03, 2017, 02:25:36 pm »
We all seem to be in our own universe in this.  In my opinion, it is best to err on the side of caution and call the doc.
----
Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

LakeErie

  • Sr. Member
  • ****
  • Posts: 347
Re: 17 days post surgery. First post and a question please
« Reply #2 on: January 05, 2017, 06:53:14 pm »
Most AN surgical patients receive a tapered dose of steroids after discharge, mine was dexamethasone.
The steroids prevent swelling and inflammation. Once the steroids are finished, delayed complications may occur as the nerves are still reacting to the surgery. Your surgeon's office can advise you on the best course to follow, for example start a new round of declining doses of steroid or monitor the symptoms with frequent reports to the office. Or even see the doctor. If you have not called your physician's office yet, do so right away.
That said, post op ( over 5 years ago ) experienced tightness in my face on the AN side and still sense it today. With time it is less noticeable. Good luck
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

Kathleen_Mc

  • Hero Member
  • *****
  • Posts: 782
Re: 17 days post surgery. First post and a question please
« Reply #3 on: January 11, 2017, 04:18:25 am »
Kevin
Has this improved ? My first thought would be the changing levels of swelling to your face (the area inside the skull can't swell so it displaces into the face), and this may be variable during the recovery time....did you phone the doctor ? I would
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

JLR

  • Sr. Member
  • ****
  • Posts: 322
Re: 17 days post surgery. First post and a question please
« Reply #4 on: January 14, 2017, 05:14:33 am »
Re swelling; I'm 2 months post op right side retrosig.  I'm still numb although it's very very tight. I noticed this am that I'm not dribbling my coffee. Does that mean it's getting better. Although my eye now closes at nighttime it does sting at day light. I hope I'm getting better but am frustrated. My surgeon told me he didn't touch the facial nerves of where is this coming from. The AN was pressing on the TN so before surgery I was on Tregetol should I be back on that medication. The AN was removed from the TN but mYbe that's causing the problem. HELP. thanks so much. Joan

Kathleen_Mc

  • Hero Member
  • *****
  • Posts: 782
Re: 17 days post surgery. First post and a question please
« Reply #5 on: January 15, 2017, 02:17:56 am »
Joan

Only a doctor can advise you to take or not take a medication, why was the tegretol stopped?

Are you still using eye drops/gels ? Is you eye blinking as often as the other ?.....if not that may be the cause of the eye stinging....also I always war sunglasses/ eye glasses when outside particularly if it's windy. Are you sure your eye fully closes at night ? It might appear to be not be.....even a couple of mm open can make the difference.

Yes the recovery period is frustrating, what helped me was to keep in mind what my surgeon said "this tumor did not grow quickly,it took years... it was not removed quickly, it was removed cell by cell.... you will need to be patient ".

Hope thing get better soon
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

JLR

  • Sr. Member
  • ****
  • Posts: 322
Re: 17 days post surgery. First post and a question please
« Reply #6 on: January 15, 2017, 05:18:48 am »
Thanks for the quick response. I was o ;Dn the meds the first month but dr took me off said since the Tumor wasnt leaning on the trigeminal nerves it wasn't needed. I use drops and ointment every2 hrs and I was taping at night time. This eye is the worst. Thanks.

Kevinmelbourne

  • Newbie
  • *
  • Posts: 2
Re: 17 days post surgery. First post and a question please
« Reply #7 on: January 16, 2017, 12:10:42 am »
Hi all, i wanted to update you.
Yes my mouth muscles have improved. I dud phone the doctor as suggested and then went in and saw him. He said that all this is par for the course. It will go back and forth for awhle. I do think that it was the steroid taper i was feeling.  The only thing that's weird now us the side of my tongue and inside of my mouth. I can't taste a thing and that seems to be intensifying by the day. However i believe that will improve also.
4 CM , half cystic. Retro sig on 17.12.16

ccooper

  • Jr. Member
  • **
  • Posts: 56
Re: 17 days post surgery. First post and a question please
« Reply #8 on: January 17, 2017, 10:49:23 pm »
It took about six months for me to recover any taste. I'd say I have 70% back. Enough to not notice. Good luck.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

UpstateNY

  • Jr. Member
  • **
  • Posts: 75
Re: 17 days post surgery. First post and a question please
« Reply #9 on: January 18, 2017, 08:19:59 pm »
I had a bit of a salty taste on my AN side that went away after 6 months.  The good thing was that it helped me keep my salt intake down.  It is common to have taste issues after surgery that many times resolve or mostly resolve over time.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0