Labyrinthectomy

[Omaschwannoma]

Has anyone post surgery had a labyrinthectomy performed?  This has been suggested by my surgeon after my three-year MR showing high signals in cochlea and vestibule.  Also after contrast is seen blood products.  There's small area of thin enhancement, which could mean possible residual tumor or granulation tissue.  Given the symptoms I've been complaining about (oscillopsia, nystagmus, vertigo, nausea, headaches, etc.) that have really put a damper on my physical life.  Can't walk outside for more than 30 minutes without needing the help of a cane.  This is regression not progression in my opinion--doctor agrees too. 

There is a very small chance my facial nerve will be compromised, I am wondering if there's any chance a CSF leak is a problem with this surgery.  He is not pushing for this, as he's letting me make the decision  based on my ability to "live with these problems", I've decided I have a long life still and in all honesty I cannot see myself tolerating the way I have been feeling for the next 30 years.  I have not gotten back to him with my decision and thought I would throw this out to "my family". 

[lori67]

Hi Karen.

I had the procedure done at the time of my AN surgery, so I don't know how it would be to have it done separately.  If it helps with the symptoms you're still experiencing, it sounds like it might be the thing to do.  Have you asked any other doctors about it?

Lori

[Omaschwannoma]

No Lori I haven't considered going for a second opinion as I trust who I am with fully.  I would consider a second opinion if others here feel labyrinthectomy needs second opinion, but from what I have read and been told by my doctor this procedure is with minimal risk.  Thanks for the response. 

[debora]

Karen,

I can fully understand how you feel about not wanting to spend the rest of you life like this. The Doctors at the Mayo said that a Labyrinthectomy will stop the brain from receiving mixed signals but said one could feel ill all of the time anyways.  Have you considered Transtympanic Gentamicin for your balance issues?
No doctor can guarantee that it will work but it is another option before surgery.  It is my last option before surgery and I am still trying to hang onto hope that it will be my answer, it has helped but I still have attacks, just not as often or as long. 
Like you I am getting worse 3 years after radiation than better and wonder how bad is it going to get and is this for the rest of my life? 
Take care and keep us informed, I would like to know what you decide to do and how you are doing.    Deb

[Omaschwannoma]

My decision is to go ahead with the labyrinthectomy.  This will probably happen after January as he's booked until then---sigh.  I look forward to a more physical life soon as it doesn't bode well to look "off" being a yoga instructor!  Anyway, that's the update I'll keep you informed of further details. 

[lori67]

Karen - good luck to you on your surgery.  I'm sorry you have to wait til January.  I know that must seem like an eternity away.

And if you had me in your yoga class - believe me, you wouldn't look "off" at all!  You'd look pretty darn good!   

Lori

[Omaschwannoma]

OMG!  This a.m. I'm fraught with retractible vertigo and nausea.  Doesn't seem to be subsiding.  Thinking now how I'm going to get through the holiday's.  Won't be long before our son arrives this week, then the mother-in-law, then Christmas with my family, then family reunion at my house for 26 with two bullmastiffs to add to it all!  SHEESH!  I'd like to take anti-nausea, but don't want to sleep through all the festivities, nor do I intend on telling my family regarding my recent MRI findings and my decision, at least not until the holiday's are over.  Seeing mom sleeping will definately bring on questions I'm not ready to answer.  SIGH! 

[debora]

Karen,

What is retractible vertigo?
Hang in there, hopefully this is a couple hour attack and you will be able to function by tomorrow.
Best wishes with your surgery, I will be very interested in hearing how you are afterwards.
Deb

[nancyann]

Hi Karen:  I'm sorry this is happening to you.   Maybe an old fashion 'flat coca-cola', or ginger ale might help the nausea?   Worth a try....   Best wishes on a successful surgery.
Always good thoughts,   Nancy

[Omaschwannoma]

Deb,

To answer your ?.....vertigo that is constant with no relief.  As of 2 p.m. it hasn't let up.  I layed down for about an hour w/eyes closed and when I sat up the tilted world seemed more upright.  The nausea subsided a bit.  Now I've gone and overdone it.  All I did was walk to the dryer and back to the bedroom to fold the clothes---BINGO.  Vertigo set back in.  Looks like closing my eyes is the "trick".  I can even feel them tracking rapidly back and forth in a horizontal motion, sometimes they do half circles behind closed eyes.  Really annoying!  Guess I'll put the teapot on and make myself some ginger tea. 

[Omaschwannoma]

This is an update of my recent surgery, labyrinthectomy through the ear canal. 

I am currently in vestibular rehab and have been for approximately 6 weeks.  The first week out of surgery I was amazed and teary-eyed at the success of the surgery.  The oscillopsia (bouncing vision) and nystagmus all but disappeared.  The second and third week they came back.  My doctor said I had experienced a "cerebellar clamp" during my first week.  I felt with more time and rehab I would be good to go, as they say.  I am feeling great now, the oscillopsia has almost disappeared, very, very tiny bounce on occasion as compared to every step.  Nystagmus can be present at times while lying in bed, which tells me I have not fully compensated--YET!  I do not have the vertigo or nausea issues as before.  My strength is returning and I look forward to being re-evaluated at the end of this month. 

Other symptoms post surgery I experience are, but very minor, metal taste in my mouth with a numb feeling on the left tip of my tongue. 

Improvements are stated above also, tinnitus and hyperacusis are less (glad I didn't invest my $500 in TRT which I would not have gotten back), the slight drooling I had seems to have resolved.  Operative report stated I have a significant dehiscent/prolapsed facial nerve.  My doctor does not have an answere for the inflammation found at time of surgery and thinks my good ear is having a "sympathetic response" to the trauma of contralateral side; hence, the symptoms of constant tinnitus, aural fullness with mild, high-end hearing loss.  If this is the cause, there's no treatment.  I am attending "lip reading" classes at the present to prepare for what looks like the inevitable--deafness. 

I'll keep you updated on the percentage of balance I have regained after my eval and whether more rehab will be warranted.  I look forward to everyday now with a happy heart and will continue with a focus on today, no more, no less.