4 Month Post Op RetriSig Approach...doing good, but room for improvement

[swy001]

Hello All,

4 months ago, I had a 9mm tumor removed from the auditory canal on my right side. Small tumor, but was having extreme bouts of vertigo. So, remedying my vertigo was the number one priority. Retrosig approach was chosen because the surgeon would have a clear view of my brain stem where she can sever the vestibular nerve that was causing my vertigo. During the surgery 90% of the tumor was removed, some was left because I instructed surgical team not to touch my facial nerve. My vestibular nerve was completely removed and unfortunately my hearing on the right side is gone. Surgeon said they did not touch any hearing organs, but since the tumor was so encased on the auditory canal, things like water or even the air caused my cells to fail and my hearing was lost.

The first 2 weeks were rough, but after that I started to regain my balance. LOTS of walking helps. Then I did Vestibular Therapy, which I highly recommend. I thought I was fine until I closed my eyes and tried to walk straight. I was walking fine with my eyes open, but when I close my eyes is when the Vestibular system kicks in. I immediately veered to one side and lost my balance.  So did they therapy for 8 weeks. i was able to shake my head and keep objects in focus while walking. Still had a little unsteadiness when I closed my eyes and moved, but my balance was good.

Went back to work 3 months after surgery, was feeling good, but did notice some unsteadiness again. Probably because I was not keeping up with my vestibular exercises. So I highly recommend to keep doing them. Also, being back on the grind I was getting less sleep . Now i was starting to experience the fatigue everyone was talking about on this forum. I find myself sometimes going in my car to take a quick nap. So, I know I just need to get more sleep and not to push myself to hard. Does anyone have any insight when balance and fatigue will return back to near normal levels?

Thank you, hope my story helps others.

[jami]

hi swy101,

My surgery was in August. It wasn't until March that i started to feel back to normal. It took much longer than i expected, and I suspect its different for everyone.

I would say that i am finally able to get by on 7 hours sleep now, but even a month ago it was tough.  I still stumble when tired, and i am very strict about not over committing myself at work.

Hang in there.

Jami

PS - I walk 5 miles/day, 3 in the morning and 2 in the evening, i think that has been a huge help

[JKnotdobbins]

Very helpful swi

Thank you

[golfguy49]

Thank you for this post.  I am 1 month post-surgery and I am struggling with hitting a plateau in my balance improvements.  I know it's still early and I need to be patient, but I am at the point where big gains in the first 2-3 weeks have given ground to no improvements recently and even some regression on bad days.  My job is largely travel-required and, I'd like to get back to it soon.  I can do some computer work from home and manage 1-2 hours of phone calls daily.   I go to PT twice per week and I do home vestibular exercises on the non-PT days.  PT can wipe me out for the day sometimes as I tend to get dizzy and it takes a lot of energy.  I wonder if anyone has felt their eustacian tubes (both sides) feel plugged up after surgery - I get "crackling" when I swallow or yawn.  Has anyone had this and taken anything to help dry them out?  I don't think it is a sign of CSF leak, because I do not have runny nose, drainage in my throat, or ear drainage.

Your post helped me come back to reality that this process may take much longer, no matter how optimistic I may have been during the first couple of weeks.

[Greece Lover]

Hey golf guy.
I know that feeling.  the recovery is so rapid initially, then it does plateau.  Keep at it, as it does continue to improve.  There will always be some days that are worse than others.  My balance gets worse in the cold, especially when windy, when I'm over tired, or stressed/anxious about something. 

but, overall, it will keep getting better!