19 days Post Trans-Lab Operation

[joewhitmore]

Today is day 19 after having a 2.5 CM Acoustic Neuroma removed with Translab surgery. The surgery took 14 hours because it was wrapped around the facial nerve and they took a long time pealing it away. They removed 100% of the tumor and preserved the facial nerve (They said it responded to very low-levels of stimulation). I spent 2 days in ICU and another 4 days in the hospital. I had some facial weakness immediately after surgery but still had pretty good movement. After about 8 days the right side of my face shut down and the only movement I have currently is a slight twitch of the eyelid. The Dr's increased my steroid and added an anti-viral drug but I've had no improvement so far. The Dr.'s tell me they are confident I will regain movement.

Other issues I'm dealing with currently include:
-Taste: I have a constant sweet/metallic taste and food doesn't taste normal on that side. 
-Fatigue: I get physically very tired very quickly. Everything requires more effort even talking.
-Vertigo: I can walk without stumbling but it takes a lot of effort. I used a cane during week two but I've gone without for the past 3 days.
-Insomnia: I'm also not sleeping much (I've only slept about 6 hours of the last 48 hours).
-Cognitive: My mind seems to be processing things slowly and I sometimes struggle to articulate my thoughts.
-Tinnitus: Pretty much constant ringing. Sometimes pretty loud.
-Hearing: Obviously the right side is deaf but the sounds I hear on my left side are distorted. Voices seem distorted and when I listen to music it often sounds jumbled.

I'd love to hear from someone with similar experience who is farther down the road to recovery especially regarding the facial paralysis. Has anyone else had similar experience and recovered movement?

Also I'd love to hear some advice on dealing with the issues I listed. Do all of these things get  better?

I'd also appreciate advice on recovery in general and how to get back to normal life.

Thanks!!!

[kcarloy]

I can answer a few, taste issues may or may not go away, could be soon or 8months.
Fatigue is normal, you had a major surgery. Balance rest with walking.
Balance will improve everyday.
Sleep will improve, try a tylenol pm (tylenol + benedryl)
The mental distraction and concerns you have are normal. They way I saw it was the energy of my brain was being used to constantly refiguring balance and the new self, so there was less energy put towards focusing thoughts and speech. That will get better week by week.

I had translab for a small tumor, and have had a great recovery. at 7wk sometimes I sit and think "do I feel any different from surgery?" I can't even force myself to want to take a nap anymore! But early on it was even overwhelming to me to read a zoo map and figure out what route to take.

Sounds like you are doing GREAT! Be patient and take care of yourself, and its said if you had facial functions right after surgery, it will return, the timing is unpredictable.

[joewhitmore]

Thanks for the reply. I'm glad to hear you've had a good recovery. It's good to hear positive results.

[neetze1]

Sounds like you are doing pretty good!  It takes time.  I am 11 months postop also translab.  I still have taste issues.  Tastes like metallic salt if that makes any sense.  The fatigue has gotten better.  I was able to return to work in six weeks.  I have constant tinnitus.  I still cannot sleep flat or on the surgical side without getting a pressure headache so I try not to do that!  Other than that, I am fine.  I have my first follow MRI scheduled in a few weeks.  Hopefully it has not regrown.  I have way fewer headaches then I did before surgery.  My life is pretty much back to normal.  Loud places are difficult but other than that, I am good.
Anita

[joewhitmore]

Glad to hear your doing well and getting back to a normal life. Thanks for the reply.

[kcarloy]

You really are doing great! Each day look back at how far you have already come! And its ok to have a bad or blah day, just move on to the next one!