6 month update

[Betsy]

Hello,

It's been many months since I logged on.  I can't believe how quickly 6 months have gone by, especially since the individual minutes seemed to last forever waiting for that first follow-up MRI.  The good news is the pesky thing hasn't changed a bit since getting zapped last August!  My hearing is exactly the same as well.  Yea!  The not-so-good news is that my balance "went" in January.  I was wobbly before, but it got really bad almost overnight.  Vestibular rehab helped a lot.  I'm not 100% yet, but on good days I'm close!  Around the same time, my doc discovered that my thyroid function is below normal.  No one is saying it's from the radiation, but no one is admitting to it either.  Luckily, it's treatable.  I still have the occasional numb tongue, bitter taste, tinnitus, and the feeling that someone is touching my left eyelid.  I also started taking medication for migraine related vertigo...the jury is still out as to whether or not it's making a difference.

This balance thing really threw me off.  I was prepared for a sudden change in hearing, not balance.  My physical therapist feels I should have had surgery instead of radiation.  He says my balance problems are because I have a partially functioning nerve on the AN side.  The healthy nerve isn't compensating like it should because the AN side nerve isn't stable.  If the vestibular therapy stops working, he's advocating a shot of genimycin (ANA Notes had a short article about this) to destroy the nerve, and most likely the hearing on that side as well.  I'm determined the therapy is going to work!

I don't regret making the decision to have treatment via Trilogy, and I'm very happy with the outcome of my first follow-up.  It's just getting hard to keep a positive attitude lately, even with the arrival of robins and daffodils.  So I'm surrounding myself with positive role models...like the folks on this forum!  I'm looking forward to catching up and getting to know the new ANers.

Betsy

[sgerrard]

Having just had a six month MRI post radiation myself, I can appreciate the feeling. It's nice to get good news once in a while!

I'm sure  the balance issue is no fun, but so far, it sounds like the fairly classic scenario of a fading AN side, and a period of adjustment to one-sided balance. Stick with the PT, I'm betting that by the end of summer you will have made the adjustment. As I understand it, you may never be as well balanced as you once were, but I think many people wind up being able to do lots of things and to function well. I would avoid that gentamicin thing if possible.

That left eyelid thing is spooky.   

Best wishes, Steve

[jb]

Hi Betsy,
I just noticed we had our radiation treatments just a week apart.  Hope you are feeling better now.  My issues have mostly been with hearing and headaches, but I've had the edema thing going on.  Any chance you have a problem with that?  Docs recently put me on Decadron and it's helped a lot.  My hearing and headaches seem much better, but my balance and tinnitus are a little worse.  I'm thinking maybe the nerve is decompressing and letting some signals through to my brain that it hasn't seen for awhile.  Hopefully it will learn to process them again. 

Good luck to you,
JB

[satman]

Wow Betsy,sounds Bittersweet,hang in there ,therapy does work.

[Jim Scott]

Hi, Betsy:

Thanks for dropping by and updating us on your progress.  I'm glad your MRI showed no growth and that your hearing remains O.K. but I was sorry to learn about your sudden loss of equilibrium.  That is definitely a disappointment, but the fact that vestibular therapy helped you regain your balance is very encouraging.  Your therapist's opinion on why you experienced the sudden onset of dizziness sounds reasonable.  If you're doing alright now with balance and your hearing is still functioning, I agree with Steve that you should stay with the vestibular therapy program - that seems to be working for you - and avoid the dreaded genimycin procedure, which might eventually help your equilibrium but at the cost of losing your hearing (in one ear).  That doesn't sound like a very good trade-off, unless you weren't getting your balance back, which doesn't seem to be the case.

Your onset of hypothyroidism isn't all that surprising.  I've read that almost 27 million Americans have thyroid problems and that one in five women experience hypothyroidism during their lifetime.  There really isn't any way to know for certain whether the radiation was a cause of your thyroid malfunction - but it could be possible. Let's hope not, because many of us here have undergone radiation treatment (Jim raises his hand).

The sudden onset of disequilibrium was depressing enough and now having another health issue (hypothyroidism) to deal with, even if it is manageable, must be frustrating.  We can understand that quite easily, Betsy.  However, your balance is returning, thanks to your hard work.  In addition, your six-month MRI was clear so you do have some positive things to feel good about.  The peripheral AN issues you mentioned are definitely annoying but they will eventually diminish or resolve completely.  I'm nearing two years post-op and had a splendid recovery but I still have some minor symptoms (occasional dry eye, mild tinnitus, a small 'numb spot' on my tongue) but they are becoming less and less apparent to me as time goes by.  I believe most of these symptoms will either disappear in time or I'll simply adjust to them to the point where they'll no longer be noticeable to me.  I suspect you'll have a similar experience.  Hang in there. 

Jim

[noodlenoggin]

Hi Betsy,
I had Gamma Knife last August. I did experience total hearing loss in my right ear as well as tinnitus before my diagnosis. It was sudden, irreversible and emotionally devastating. I adjusted and have continued to run two businesses. After the Gamma Knife I experienced few side effects until recently at which time balance problems began to surface. I trip over my on feet but have learned to hang onto the wall when showering and laughing at myself. What else can we do. I feel good, have energy, work 80 hr. per week and have fun everyday. I feel so fortunate I had no facial paralysis and can function without people knowing my situation (unless I decide to tell them). I went for my first follow up MRI, the tumor has a hole through the center and ill hopefully begin to collapse. I feel blessed.
Linda