18 months since GK

[carjon0]

I had GK and for 4 months after that was progressing well. Then out of the blue, I began to lose my balance again. Since then, Jan 2013, I have had headaches, a lot of balance issues and loads of physiotherapy. That identified a very specific area of balance - if I looked in the direction of 12 - 3 on a clock face in front of me, I fell. I had to stop driving, gave up work as it was quite impossible and worked on the balance.
Now it's a lot better. Still can't drive, but my balance is pretty good, as long as I'm in usual places, keep working on the exercises and don't have a bug. If I do, or if I go somewhere with a lot of visual challenges, like hills and corners Tec, my balance can't cope.
I fell a couple of weeks ago - in a usual place, no bug, but I had turned, quite slowly, to cross a sloping surface and it was too much for my visual system to cope with, so down I went. What I can't do any more is correct myself if I start to fall...quite bizarre really, so there I was flat out!
One other thing has been nerves jumping in my neck and face on the tumour side. It dies down then starts up again a few weeks later. I'm hoping that as the tumour continues to shrink, its effects on the nerves will settle, but it's still changing. This may chime with others experiences.....or not.

[rodneyd]

Hi carjon0,

Your symptoms remind me again that even though there is no physical cutting into the brain stem area, CK and GK are still surgery of a sort and the resulting impact to the AN can cause additional symptoms. 
What size was your AN?  Have you had an MRI since the CK?  Some of your symptoms may be related to swelling of the AN post CK (approximately 33% of AN's swell post radiation for up to two years), and this may be causing your additional symptoms such as your facial twitching (suspect the facial nerve may be the culprit).  From what I have read on here, symptoms come and go, seemingly at will, but usually they subside over a period of time.

I have a .9 cm AN and was strongly considering CK but decided to go on W & W in January, 2014.  My symptoms (mainly balance issues) have not worsened in this time and reading stories like yours makes me feel more comfortable with my decision.  Not being able to drive would really bum me out.  Plus falling down and not being able to control the fall is very scary and can lead to serious injury.

I wish you all the best and hope that your symptoms will subside over time and you can return to a more "normal" life.

Rod

[mplmimi]

Hi Carjon0,

I am on a very similar path as you are.  I am 13 months post GK and still dealing with lots of symptoms,  especially balance and tinnitus.  I too have experienced the unstoppable fall at work in front of customers while leaning and falling flat on the floor for no reason.  I bump into walls as if I have been drinking and have difficulty with driving sometimes.   

My AN is 14mm and after the second MRI I was told it measured 13mm. The neurosurgeon explained that the GK procedure continues to be effective for 2 yrs, but until the tumor actually dies and physically shrinks the symptoms would continue and slowly diminish over time. 

I have had a pretty good week until today when my symptoms came on strong again.  Like others have said,  it seems to vary from day to day.  Somehow I tthink the weather seems to affect me too. 

I try every day to go about my old "normal" life, but usually have to make changes based on how I feel.   Some days I win and other days the AN wins, but in the end I know I will win.  It will just take time.

I'm sorry you are having to limit your activities so much,  but hopefully things will turn around soon.  We will just have to be patient.

Mpjmimi

[carjon0]

Rod,

You're entirely correct about the unknowable factor. On the hospital website, they state that after GO, people are back at work in 2days. Now, I'm sure some people are, and I seem to have a remarkably unusual reaction, but until a large body of evidence can be built up - based on us all - there needs to be a wider set of variables with the medics. I'm just grateful that this could be treated at all.
Not driving is a pain, but until I'm more confident, it won't be happening, so at least that's good news for other road users!
Hope you keep well.

[carjon0]

Hi mpjmimi,
My neuroma was small - 0.9cm and was supposed to cause no further problems, but it grew to 1.2CM. Still small, but the effects are obviously very personalized.
I do find the single sided deafness a real hassle, because I can't hear any distinct sounds in a group - it's like being underwater in a very noisy swimming pool. Also, I can't tell where sound is coming from, so crossing roads at busy junctions is not advised.....and that's if I'm on foot!
It has been a vertical learning curve and I'm sorry to hear that you you're dealing with much the same by the sound of it. I'm sure it will improve.......
Take care

[carjon0]

I wonder if this strikes a chord with anyone else??

Over the past week, my balance has been much worse.
It's been very windy here, and walking into the wind was hard work and I have quite a headache too.
My thinking is that on a daily basis, we now have to balance ourselves, while it was once automatic and that effort causes headaches. Just an idea, but I'd love to hear others.
  

[Echo]

I had Gamma Knife 6 months ago for a 2.4cm AN.  My balance is currently worse than it was at the time of my Gamma.  I can definitely connect some of my symptoms to the weather.  There are days where I wobble or wander far more than other days and sometimes I just feel like I'm walking on a boat.  Our brains are working harder to compensate for what isn't working, so I'm sure that's where some of your headaches may be coming from.  Personally, I still get quite tired by the end of the day, and again, I suspect it's my brain working so hard to help keep me going all day. 

Stay positive!  As other have reminded me, this is a process and we need be patient, GK is not a quick fix, but we'll get there eventually.

Cathie.

[robinb]

I know many have followed my thread...

I am 14 months post GK; just have tinnitus that I am able to tune out, hearing on AN side practically non existent, but manage that too.I haven't been working out for last 5 mos, but that's due to laziness!! No facial spasms for over 6 months!

If I am any example, it does get better.

[carjon0]

Thanks for this Cathie.

I think you're exactly right - the wobbly days do seem to be unaccountable.
On some madder days, I've wondered if strong drink might correct it, but so far haven't tested the theory! 

Robinb,
Thanks for the hopeful post. I am certainly better than I was a year ago, but it feels like it's taking forever, with one step forward and two steps back sometimes.
Hope you keep well - are you driving again, if you stopped??
 

[robinb]

Never stopped driving...

[mplmimi]

I agree....I think the weather affects me too--especially when it's raining.  Tinnitus seems to be worse and I feel a bit more off balance. 
I also get the headaches that seem to be related to the daily efforts to maintain what used to be automatic.
In spite of everything,  I feel like I am starting to take baby steps toward noticeable improvement!!
FINALLY!!

Yes...this is quite a journey like no other!
Mpjmimi