Balance Issues - Day vs Night after GK

[john_strobel@outlook.com]

Diagnosed with 18x9x9 mm on left nerve in March 2021.  Had GK at Mayo/JAX in June of 2021.
I've noticed a fairly large increase in balance problems since the treatment.
Also noticing balance is a bit better in daylight, horrible at night.
I took my greyhound for a walk last night, lost my balance and fell on the poor guy in the street.
He's ok, I'm ok, but it sure was an eye opener.

Any advice from others on how realistic it is to expect my balance issues to get even marginally better?
I don't feel comfortable driving long distances or driving at night at this point.

[donjehle]

Hi JohnOnEasternShore!

First of all, I'm curious how your experience was at the Mayo Clinic in Jacksonville?  I considered going there briefly, but I didn't know anyone who had a treatment for AN there.  So I would love to hear what your experience was like there.

In terms of your balance, I can't speak to the problem after GK treatment, but I can address it somewhat since I have struggled with my equilibrium prior to treatment.  I had fallen numerous times including one time when my dog ran in front of me, and I tried to stop, and lost my balance.  Fortunately, we were at home, and I was able to fall on the couch and didn't hurt myself.  I fell once trying to get my shoes out of the closet and went headfirst into the closet.  I fell a few other times as well, but fortunately did not hurt myself on any of the falls.  I had to use a cane to keep from falling anymore.

Then my neurosurgeon recommended that I take vestibular therapy from a vestibular therapist (not from a regular physical therapist).  I began vestibular therapy about 4 weeks ago, and my balance has improved dramatically.  I no longer use a cane, and I haven't had a fall in 3 weeks.  I keep improving each week, and I have a lot more confidence now that I am going to be able to maintain my equilibrium.

As far as doing better in the daylight than at night, that only makes sense because your vision helps your balance.  My vestibular therapist has given me many exercises to do at home, and many of them I do with my eyes closed.  These exercises help to remap my brain and allow me to do better in the darkness.

I know there are those who have had vestibular therapy following their GK procedure and have regained their balance.  So I would encourage you to at least look into that option.  All I can say is that it has worked wonders for me.

Best wishes in your future!
Don

[notaclone13]

Hi John, I had 3 sessions of Linac radiosurgery on a 1.7 cm AN in late April/early May 2021. My post-radiation experience is very similar to yours. Balance became worse after radiation and particularly bad in the dark. I’ve started walking at dusk to try to improve it. I avoid driving at night as well. In addition, I’m now having hemifacial spasms, which aren’t painful, but are very discouraging. The spasms didn’t start until 9 months post radiation.

[john_strobel@outlook.com]

@donjehle:   I originally sought treatment from a Neurology specialist in Birmingham, but being 3 hours away it really wasn't practical for me to keep going back and forth for numerous appointments.    The staff at Mayo Clinic in Jacksonville are very efficient, and know that people travel longer distances for treatment there.   A series of pre-surgery appointments and preps were all done in one single day of contiguous sessions, with the radiation performed on the second day.  By noon, I was back on the road to Alabama with my wife. 

At one point I went for a few weeks of vestibular therapy at a local practice, and I found it helped slightly but the swelling of the tumor at that point was overpowering at times and I decided to stop treatment until things calmed down a bit.  Now, at 9 months my hearing is fluctuating wildly in that ear (if I had to guess, between 20-30% up to perhaps 40% on a good day).  Balance is definitely still an issue. During allergy season, I'm finding that taking a Claritin-D occasionally helps to reduce symptoms and sinus pressure in my head which seem to aggravate the tumor.    My larger concern lately is my inability to concentrate at times and general irritability, particularly at work.    Wish everyone the best of luck...     

[donjehle]

Thanks, JohnOnEasternShore, for that update!  On March 25, I have a video consultation with the Mayo Clinic (except it's the one in Rochester).  It sounds like the procedure for GK is pretty much the same at all the Mayo locations in Jacksonville, Arizona, or Minnesota.  Let me ask you a question.  You mentioned by noon, you were back on the road to Alabama with your wife.  Did you do any of the driving?  Or did your wife do it all? I don't think my wife could drive all the way back from Minnesota to Georgia by herself.  But I don't know how bad the dizziness would be right after the procedure.  I can drive now without a problem, but I don't know what it would be like then.  It almost sounds like your dizziness became worse over time.  From your experience, do you think I will be able to drive right after GK?

Another question for you: Did you have the headframe for GK?  Or did they use a mask?  My understanding is that the latest model of the Gamma Knife, the Icon, allows either one.  What was your experience like with keeping your head from moving?

It does make sense to me that your balance would be worse after the tumor swells (which normally eventually happens after GK).  I can see why you wanted to delay your vestibular therapy.  How bad was your balance prior to having GK?  Someone told me that you come out of GK with maybe a little greater intensity of the symptoms you had going into GK.  So, if you have headaches going into GK, you might have worse headaches after the procedure.  But if you don't have headaches prior to GK, you probably won't have any coming out.  And they said the same thing was true with balance.  So, I'm wondering from your experience if you found that to be true?

In terms of your hearing, I knew that it could get worse after GK, but I did not expect it to fluctuate wildly like you describe.  But for me, I'm only at 12% now, and my audiologist said that I was deaf in that ear for all practical purposes.  So, I don't think that GK will make it much worse for me, but for you, that must be terribly frustrating with it fluctuating like that.  Do you know why it is worse on some days than on others?  Have you discovered any connection on why that is.

Thanks for the tip on the Claritin-D!  That makes a lot of sense to me.

I think inability to concentrate and general irritability often occurs with an AN.  Some people seek counseling to help them through it.  I'm currently seeing a life coach to help me with my work experience while having an AN.  I know for me, the AN has affected my mood and my patience.  I was hoping that having GK would alleviate that somewhat.

One last question: how big was your AN when you had GK?  It doesn't seem like there is a direct correlation between the size of the tumor and how it affects one's balance.  And I don't understand that.

Thank you for all the information you have provided!  And best wishes on your recovery!!!

[cmclane28]

Hi John, I had 3 sessions of Linac radiosurgery on a 1.7 cm AN in late April/early May 2021. My post-radiation experience is very similar to yours. Balance became worse after radiation and particularly bad in the dark. I’ve started walking at dusk to try to improve it. I avoid driving at night as well. In addition, I’m now having hemifacial spasms, which aren’t painful, but are very discouraging. The spasms didn’t start until 9 months post radiation.

My experience is similar to this as well. I had 1 Gamma knife-type radiation treatment (they only called in stereotactic radiation) in August of last year and my balance has been pretty bad ever since, especially in dark environments. While working out one day at the gym a few months ago I started having facial spasms on the AN side of my face too. As you said, not painful at all but always occurs on that side. The spasms are mainly on my eyelid, forehead or upper lip. It doesn't happen that often but I hope it doesn't get worse.

I'm scheduled to see a vestibular therapist next month. Sounds like others have had success with that, so I'm looking forward to it.

[donjehle]

I would love to hear how your vestibular therapy goes, cmclane28!

Please update us with any improvements you have with your balance.  After my vestibular therapy was completed, I don't have to use a cane anymore to keep my balance.  I hope yours goes as well!