Still dealing with dizziness

[GeordieLaforge]

My wife had surgery to remove a small (less than 1cm) acoustic neuroma in August 2011.  They removed both balance nerves and the hearing nerve on the left side.  She went through physical/speech/occupational therapy after the surgery but still suffers from dizziness and nausea and being tired (may be medication related but she has little energy).  The Dr's have given her meds to relieve the nausea but she still has the dizziness and though it comes and goes, she ends up spending most of her day in bed.

I've tried to convince her to go back to the ENT or the Neurologist instead of her internist but she keeps saying she doesn't think it's related to the surgery so.....is this normal to have the dizziness this long after the surgical removal of the tumor???

Larry

[leapyrtwins]

Everyone's AN experience is somewhat unique, so I can't say what's "normal" and what's not. 

From my personal experience I can tell you that I wasn't dizzy this long post op.  I had extreme nausea and dizziness while in the hospital and it probably lasted a few weeks after I went home.  But that's just me - and it doesn't necessarily have any bearing on what your wife is experiencing.

I'm a little puzzled when you say they removed both your wife's balance nerves.  If she only had one AN, why would they need to remove the balance nerve from both her inner ear canals?  This is not the norm.  What type of surgery did she have?

Regardless, dizziness and nausea can be caused by other things so it might not be from her AN surgery.  You say she's been taking meds to combat the nausea, has she been given anything to combat the dizziness?

Jan

[LakeErie]

Jan, I think he means both vestibular nerve branches. The vestibular nerve has superior and inferior branches depending on which area of the semi-circular canals are served.
Larry, has the dizziness been constant since the surgery? Or was there some recovery and a resumption of the problem? I had head difficulties for 7 months after surgery before normalizing. I have read some posts here that stated wonkiness persists for the posters after three years. I tend to think constant dizziness for years would not be the norm, but certainly possible. You or your wife could at least ask the AN doctors about the situation. Presuming it is not AN related may be wrong. Good luck.

[GeordieLaforge]

I probably do mean the vestibular nerve branches...I'm still studying this to figure out more about AN's.  The dizziness is not constant..it does come and go and some days she is feeling pretty good and others, she is exhausted and wants to sleep all day.  They had given her meds for the dizziness before and for a while after the surgery but it just made her sleep all the time.  I would love for her to go back to the AN doc (the ENT) and try to find out if it is AN related but it's like pulling teeth to get her to call him.

[millie]

I'd call the doctor.  I still get dizzy or wonky and I am 6 months post trans lab.   I am much better than the black hole I was in post surgery but I am not what I was two years ago.  However, I am cooking, walking, looking forward seeing friends and family so my balance must be better...maybe she is depressed?  I myself can gets bouts of sadness and wishing for a more perfect state but then I remember th dear folks we have lost to cancer or other tragedies and I know I am lucky.
I hope she feels better soon.
Mil

[GeordieLaforge]

Thanks Millie...depression has been mentioned but she is already on an anti-depressant and when she isn't sleeping, she doesn't seem depressed.  I wonder if all the meds combined are working against her rather than helping her.  She said she would call the ENT today...will see what happens.

Larry

[Syl]

Hi Larry,

Bless your heart for taking such good care of your wife & joining us here in the discussion forum.

You don't mention what meds your wife is taking, but sometimes meds have side-effects, and many times they can be unpleasant ones. For a while I was taking Pamelor to help relief my headaches. One of the many possible side-effects of this drug is dizziness. Although a wonki-head/dizziness/light-headedness has been one of my big AN-related issues, the drug only made it worse. Pamelor made everything spin if I got up too fast. The spinning used to happen before my surgery, not after. It started up again when I started taking Pamelor.

As I mentioned above, the wonki-head has been one of my biggest AN issues. With time, & plenty of effort on my part, this has subsided. I used to feel this way all the time. When I got tired it felt even worse.

I still get the wonki-head, but I do have a clear head most of the time. I don't do the exercises the therapist recommended, but I do my own therapy. I have tried many things to help improve the way my head feels. I get tired of one thing & try something else. However, there is one thing that I have been consistent about. I walk regularly & find that when I skip a week or more, the wonkiness increases. Exercise itself can make me wonki-headed, but without it, it only gets worse.

Even if you & your wife feel that she isn't getting better, keep in mind that this is a long recovery. At around my second anniversary, I felt that the wonkiness was much better & I was sleeping straight through the night. At the 3-year mark, I could honestly say that I felt good. I was still getting chronic headaches, but I felt so good as far as my other issues were concerned.

It wasn't until the beginning of this year that I could say that my headaches are no longer chronic. In June I will be 5 years that I had my surgery. Keep at it, it will get better.

Syl

[IanInVenice]

I'm 3 months post op.

Still getting dizzy and headaches.

Some pressure feeling too in my head.

Any ideas or exercises you recommend?

Thanks!

Ian.