Author Topic: My surgery journey for 3cm left vestibular schwannoma resection by retrosigmoid  (Read 1172 times)

Justciel

  • Newbie
  • *
  • Posts: 1
Hi, I have been lurking around to find information about vestibular schwannoma ever since I was diagnosed last October but today I’m happy to say that I completed my surgery and is in the 9th day after the surgery. I hope my journey may help individual like myself that has been diagnosed and looking for more informations.


Some info before I start, I’m from Singapore so a lot of things maybe be different from most users here.
Age 28 male asian. Surgery and hospital stay in Singapore General Hospital by a team of neurosurgeon  ENT doctor.


Diagnosed on October of 2022, 3cm left vestibular schwannoma pressing against trigeminal nerves. My case is a lot more unusual as most people early symptoms are hearing loss. For me i have trigeminal neuralgia that was initially diagnosed as TMJ by dentist until I was sent for a MRI scan to confirm it was tumour causing it.


17th feb - removing of tumour (9hours), woke up with single side deafness on left side and giddiness
20th feb - after CT Scan doctor recommended a secondary surgery(3 hours) put a tube into my brain to drain the excess fluid built up pressure in my brain. Same day woke up and felt a lot better.
21st feb - no pain surgery just fatigue (probably lack of sleep the first two day after surgery) and giddiness plus sore throat( more on this).
22nd feb - everything feels fine except for giddiness (understandable) and sore throat causing difficulty swallowing for the next couple of days.
24-25th feb - started physiotherapy and speech therapy for my movement rehab and also check on how my throat is doing.
26th feb - most functions are back to near normal just still have balance issue which is manageable with a walking cane.



From here will be some thoughts rather than my journey.

Everything was way better than expected after read as much as I had but that could also because I’m the young minority case. So for anyone young and diagnosed don’t be afraid. Single side deafness so far has been weird but not bothersome for now. Though I do get little tingle and numbness on my left ear every own and then but there isn’t really anything notable up till now that warrants for any measures. The main bothersome part is just the giddiness and balance for myself. The giddy balance issue feels like you turned your head but your brain is still kinda catch up on your current direction. But the doctors told me that it is absolutely normal will be be back to normal in time.


I’m just glad that now that the tumour is removed and there’s no more nerve pain!😁
Good luck to anyone who could use this information. I pray the best for you🙏
« Last Edit: February 26, 2023, 05:22:46 am by Justciel »

Greece Lover

  • Sr. Member
  • ****
  • Posts: 341
Thanks for this report.  What you call "giddy" some here on the forum I think call "wonky" head.  I still get that sometimes.  But, your balance will continue to improve.  the body is amazing.
Good luck!
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.

cherylann

  • New Member
  • *
  • Posts: 16
Hi there!  We have similar dates for surgery and recovery (mine was the 20th and got to come home the 25th)- I am just so tired all the time but I force myself to get up and out and do my walking and balance exercises as I feel better psychologically afterwards. I am also probably way older than you! (69 female) I was pretty "high" after surgery then crashed and burned around Wed/Thurs as my meds were high and nutrition was off.  I go in "waves"- but embracing the journey as I know I will only move forward.  It's just hard to be patient...I was swimming, cycling and hiking and weight training the week before surgery....!  Take care and the best to you! Sincerely, Cheryl Palen

v357139

  • Hero Member
  • *****
  • Posts: 528
Congratualtions.  Glad it worked out well.  Another good story for the forum.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Cheryl R

  • Hero Member
  • *****
  • Posts: 1824
You are very early in recovery.  Do not over push yourself or recovery will take longer.   The brain needs time to heal.     This was a major acute surgery.    In several days you can do more and more but the body needs time to rest first.        I know is hard to wait but will be better off in time.
                                                                    Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care