head pressure, balance & intermitted hearing loss

[cburley1]

1.6 cm
Acoustic Neuroma found 11/16/10
Gamma Knife 2/7/11 at WVU

I never had a follow up w/gk doctor and they are not scheduling mri till November, 9 months after gk...having balance issues, facial spasms, some hearing loss but now hearing actually disappears for about 5 mins at a time, can't stand loud sounds, can't block out other conversations if someone is having one close to where I'm talking to someone (probably doesn't make sense)...lots of memory problems, taste & smell are different... I've had these symptoms for several years (not knowing what they were from) but now, after gk...they are worse, family physician sending me back to neurologist. We had thought we asked all the questions we needed, but we were so overwhelmed by this diagnosis...and when I left the hospital after gk, no one went over the side effects I may experience, what is normal & what is not...does anyone have any of these issues....I would appreciate any help...

[CHD63]

Hi cburley1 and welcome to this forum .....

Others will be along soon who will probably be more helpful.  In the meantime, it is not uncommon for patients who have radiotherapy for their ANs, to experience swelling at about four to six months post-treatment, which could cause some of the symptoms you are experiencing.  Certainly, if these symptoms are extreme or troubling, you should contact your treating physician for advice.  Sometimes a steroid countdown is indicated.

Check your messages for my personal message to you.

Many thoughts and prayers.

Clarice

[cburley1]

Thank you for your reply & I'll check my messages

[mattsmum]

hi - i had radiosurgery (linac) almost a year ago, and can identify with lots of your difficulties.
all my pre treatment problems were worse after (including balance, facial twitching, facial numbness, memory problems, hearing loss and sound sensitivity).
and the increased hearing difficulties you notice when there are other sounds around are typical of the effect of a one sided hearing loss, so perfectly understandable.
as clarice said - swelling can occur after radiation which can cause symptoms to worsen. the other possible cause is the direct effect of the radiation.
either way - steroids may be recommended particularly as your hearing loss is fluctuating (and thus maybe helped) so try to get an appointment to see someone asap. i was discharged by my oncologist before i started having my most major problems and it was my ent and neurosurgeon who have been dealing with me since.
i still have difficulties esp with balance; but i no longer feel unwell and am getting used to living in my now-wobbly world! i had trigeminal neuralgia, headache and fever which has settled, my sound sensitivity has been resolved with desensitisation therapy, and i am having vestibular rehab. and i am told i have another year in which i am likely to improve, so don't give uip hope of feeling better.
hope this is of some help,

vikki

[Tumbleweed]

cburley1, don't despair: there is reason to be hopeful.

First, some background info: Dr. Chang (Stanford-based doctor) told me with CyberKnife -- which is very similar to GammaKnife -- patients are likely to have pre-existing symptoms get worse following treatment. For example, if you have vertigo before getting treated, it will likely get worse after treatment. But if you don't have vertigo before going in for treatment (and even if you once had vertigo but it has since resolved), radiation will not likely cause it to occur or recur.

The good news is that these effects are almost always temporary. The one exception is that hearing loss is often permanent. But mattsmum is correct that fluctuating hearing loss is less likely to be permanent if treated by steroids (and possibly even if not). The fact that your hearing recovers, even if only partially, indicates there is no irreversible complete damage to affected portions of your hearing nerve.

You are only five months post-treatment, and that's a timeframe -- as Clarice noted -- when many radiation patients go through their most difficult period. Hang in there. You should be feeling much better in about six months or so, possibly much sooner. I began to rebound quickly only six months after receiving my CK treatments. Other radiation patients have reported on this forum that they began to improve rapidly about 12 to 14 months after treatment.

You will feel better soon.

Best wishes,
TW

[Chris P]

cburley1.

   I agree with the other messages, I had the GK a year ago and I am dealing with hearing loss, balance problems and facial weakness .  These all became much worse after 4 months had passed .  My doctor told me it was due to swelling after the radiation and that it should get better as the swelling goes away which could take 6 months or more.  It has been 8 months now and it has gotten some what better but not all the way yet.  I go again in August for a MRI to see what the tumor is doing and if the swelling is going away.  I just try to keep the faith that it will all get better in time.

  Hang in there and if you have any important concerns and question be sure to call you doctor they will talk you through it, and of course you always have your friends on this forum.  Good luck and keep the faith.

Chris P

[cburley1]

THANKS FOR ALL THE INFO...IT MAKES ME FEEL BETTER TO HEAR FROM PEOPLE WHO ACTUALLY GET WHAT I'M TALKING ABOUT...HAVING AN ACOUSTIC NEUROMA & TREATMENT FOR IT, IS NOT AS BLACK & WHITE AS DOCTORS TRY & MAKE IT OUT TO BE...LOTS OF UNANSWERED QUESTIONS....