Labrynthectomy

[Dizzy miss]

Help, it looks like I am going to have a Labrynthectomy for Vertigo Gentamicin injections don't work any more.  Has any one had this done?
Please let me know how you are doing since the surgery and if you would do it again and the Doctors name and hospital.
Thanks,  Dizzy Miss

[kenneth_k]

The labyrinthectomy is also a part of the translabyrinth approach for removing AN's (those are actually quite difficult words for a non-native speaker). Check out stories from people who had one.

Recovery is different from person to person but in general, the first 3 days are the worst. Then comes a period up to 3 months were progress is following a steep curve. After 3 months progress will flatten but still improve up til 12 months.

It is more the rule than exception that balance will be good or even better than before surgery. Given time, your body should be able to compensate quite well. I had dizzy spells before surgery. Now, things are better and worse, but overall I would do it again.

I wish you luck Miss Dizzy.

Kenneth

[doinoc]

Hi DizzyMiss,  did you have treatment for your tumor?  or are they just treating the dizzies? 

[Dizzy miss]

I had radiation done with the Novalis in Oct 2004 and 4 months later vertigo hit,  I have had problems with dizzyness and major vertigo attacks since. 
My MRI's have shown that the tumor is shrinking but my balance nerve is shot.  The dr advised against cutting the balance nerve because of the radiation
and that my facial nerve would more than likely be affected as well.  So the labrynthectomy would not be going in to get the tumor and cutting the
balance nerve. 
I am concerned about having this done.

Thanks,  Dizzy

[doinoc]

Hi fellow dizzy miss,  this is what I'm affraid of that would happen to me if I have radiation instead of surgery.  Mine would be the gamma knife since i have lost my hearing already but my main symtpom at diagnose andmy most concern post treatment(besides facial issues) is balance.  i already struggle and think just having the thing cut in surgery would  be a better way to go for my tumor.  Its 1.5 x.09cm and my symtoms are increasing at a quicker pace now.  How big was your tumor and how bad were your symtoms before you had radiation done?  I'm actually going to a second consult with the Neurologist  that would do radiation tomorrow for some more questions to be answered.  I'm praying for you ...

[Dizzy miss]

Kenneth,

When did you have this done and what are your worse symptons?  I hope you are feeling well
and able to function most of the time.
Thanks so much for your reply.
Dizzy Miss

[Dizzy miss]

Hi Doinic

Some people do quite well with radiation it is quite a choice we have to make.
My tumor was small 6mm but I was scared and had total faith in my Doctor.  I didn't know enough to research what he was proposing and had the radiation.
 
I just had a friend go to House Ear clinic in Los Angeles  around 2 months ago and she came out of surgery with out any problems she had a 2cm tumor, apparantly the tumor was pressing on her balance nerve so she had lost balance gradually on that side and didn't even know it.

I am becoming more depressed and desperate and am very concerned about my life after surgery should it not work or make things worse.

Doinic I pray that you will find the right answer for you and that your outcome is very successful.

Many hugs,  Dizzy Miss

[doinoc]

Hi Dizzy Miss,  I actually had a consult at House ear with a dr Luxford via phone.  I sent my films to them.  They also suggested surgery over radiation because of my balance problems now.  Yes  I've done my research but that can be more maddening and then just going for it.  I don't know too much about the Labrynthectomy but it may be the procedure my dr told me about if i contunue to have extreme baLance issues after radiation if i choose that.  He did  mention the injections also.  Your tumor was small and that itself causes more balance problems becasue your other balance nerve hadn't had time to compencate for the problem.  have you gone through vestibular rehab???   So the surgery they are propsosing is just to cut the balance nerve?  Have you gotten any second opinions?  I'm sure you Dr's a good dr or you wouldn't have stayed with him....I trust my dr  too but i still got another opinion. 
  Please try to hang in there.  The depression over this is normal....its been a while you've been dealing with this i see, but please, please  hang in there.  I will definately be praying for you. Those who don't go through this have no clue what you feel and how much you have to cope with because you don't looK "sick" on the outside. only those that have experienced it know what youre goning thorugh. Keep in touch
Peace to you
Doinoc

[Vivian B.]

Hi Dizzy Miss,

I see a lot of balance issues lately on the forum. I myself had many questions about this. The surgery that you are referring to I don't know too much about, but I had a balance test done recently that showed 49% loss of the balance nerve, but my balance is not bad. I was told that eventually the brain adjusts and the good ear compensates. As difficult as it maybe I would maybe ask if this a possibility in your case that overtime your balance will adjust on it's own before making the surgery decision. It may be only a matter of time. It is depressing and it is annoying, and it's true that others would never know what you are going through by looking from the outside, but keep up the good faith and just know that these issues will resolve overtime although it may seem like it's forever. Be patient and good luck.   

[Dizzy miss]

Vivian,

Thanks for  your reply.  I have had times when my good side adjusted and took over i have had the gentamicin injections which worked for awhile but for some reason my bad side is kicking up a fuss again and I find it intolerable to go on this way any more. I asked the dr if the balance tests would tell me how much more function I have lost but he says that won't tell me much.  My fear is that this could go on indefinately     I have to work ( so I can pay for my medical issues) and need to function.  The last balance tests I had were at the Mayo and I lost 53% on that side that was in 2007 so who knows how much longer this could take.
I really appreciate your advice though.  Sincerely,  Dizzy