3 years Post CK - Symptoms returning

[JuliePA]

I had my AN (buger) nuked July 15th 2008 and have had two followup MRI which have shown no change in the Buger's size.. I thought as time went by, my side effects would have diminished, which they did for the most part, my dizziness & unbalanced feeling has mostly gone away. My Swelling only returns when a storm is coming.. I have lost most of my hearing on the AN side.. My biggest concern is, for the last two months I have had a numb area on my AN side cheek.. I have never had numbness before and I am kinda freaked about it.. Has anyone else suffered from side-effects so late after a CK or GK - Thanks

[Sefra22]

Hi Julie,
 I just posted the same question a few day back. I am experiencing eye twitching, ear pain and other symptoms I had pre-treatment. I am seeing my ENT this week, and hopefully he will tell me this is normal. It is frustrating, my symptoms aren't severe by any means, but when you live with some in your head that's not supposed to be there you always have to wonder.....

[ppearl214]

I had my AN (buger) nuked July 15th 2008 and have had two followup MRI which have shown no change in the Buger's size.. I thought as time went by, my side effects would have diminished, which they did for the most part, my dizziness & unbalanced feeling has mostly gone away. My Swelling only returns when a storm is coming.. I have lost most of my hearing on the AN side.. My biggest concern is, for the last two months I have had a numb area on my AN side cheek.. I have never had numbness before and I am kinda freaked about it.. Has anyone else suffered from side-effects so late after a CK or GK - Thanks

Julie
Spelled "booger" as in "brain booger"

5 yrs out of CK and yes, every now and then.... far and few between, I have things crop up but based on multiple conversations I  have had with multiple doctors that are treating me, they tend to attribute them more to being an AN'er and not totally necessary to the CK treatment.  They cannot guarantee to me that long term with any radiation treatment (or any treatment, for that matter), something may or not crop up but in my case, they feel its mostly due to the fact that I am an AN'er with a "dead booger" sitting there.

Now, I do know of a surgical AN'er..... 10 yrs post surgery, who, out of the blue, has run into facial issues and is having it followed up by her team.

So, as an AN'er... sometimes, we may have to say "never say never...."

Just my 2 cents.

Hang in there!
Phyl

[Anomar11]

Hi All. 

I haven't posted in a while, dealing with some other issues.  I'm 3 yrs out from CK and will have my MRI after Christmas.  I have been having a reoccurance of some of my presenting symptoms, most prominent is an ear ache.  I've also had some episodes of nausea and a feeling like my sinuses are acting up.  This passes after some meclizine and rest.  Otherwise I've been almost normal  for the past year.  Fbarbera in his detailed blog of his CK journey talks about symptoms popping up at about 36 months out, and that this was not out of the realm of possibility.  His recap is most helpful if you haven't read it.  I was told by Dr. Chang prior to treatment that some symptoms prior to treatment may continue to show up indefinitely. 

[Tumbleweed]

I had an episode of fullness in the ear and pronounced hearing loss on my AN side 40 months post-treatment (that is, just last week). It lasted for about 36 hours, after which time my hearing slowly but fully recovered. I asked Dr. Chang about my symptoms and he said in so many words that it probably wasn't caused directly by my tumor. The affected cranial nerves are my Achilles Heel, and they will act up from time to time when my body is stressed.

What was reassuring to me was that my episode happened the two days before my 40-month followup MRI was taken. That MRI showed my AN had shrunk almost 40% in volume over the preceding year. So take heart: These symptoms, while unpleasant and worrisome, do not necessarily indicate a recurrence or swelling of your AN. It's a temporary setback, like  the flu. We gotta just ride it out.

Best wishes to all,
TW

[Tisha]

Hello all!  It's been awhile since I've joined in also!  Crazy at work and with 2 teen boys (and all the encompasses) has taken my attention.  It will be 3 years post CK in January 2012.  My sypmtoms seem to return about every 8-10 weeks.  I have unbalance, and then nystagmus starts.  It used to be that I could take meclizine and sometimes it would stop it in it's tracks, and sometimes I would have to lay down for a few hours.  Now...when the attack starts, I can have unbalance for 1-2 weeks (like now, and Valium helps alot)...or sometimes nystagmus will start and I'll be sick, cold sweat the whole works.  It's like a bad hangover for 3 hours.  When it's done, I'm pretty much wiped and exhausted, but can function.   I notice I sleep ALOT for a week or two after these attacks...like 9-10 hours a night.  It's probably the valium, LOL! 

I have noticed that alcohol sometimes triggers it, but not always.  I don't drink much anymore because of that.  I also found out that Ambien was causing it BIG time, so no more of that.

My doctor said that probably in time, the frequency will become less and less as the other balancing nerve takes over completely.  It's just because there is still this tumor just sitting on that nerve. 

Good to see everyone again!  Tisha