Post-radiation

[Carolgre]

Just finished five fractionated stereotactic treatments on Nov. 17. No side effects except for a headachy type pain in the area of my head where the tumor is and some temporary voice hoarseness. The headaches were alleviated by Advils and the hoarseness cleared up. A day or so after my last treatment, hearing in my bad (right) ear seemed to improve somewhat. My word recognition is still bad but I seem to have better tonal quality. It's only a slight improvement but definitely noticeable. Has anyone else had their hearing improve after treatment? I know it may only be temporary and that I may lose hearing again as the tumor dies.

[ColleenS]

This is the first post I have seen with stereotactic radiosurgery. I am starting that in a week or so. Glad to hear you did not have many side-effects.

[mamugel]

Did your tonal hearing continue to improve or get worse?  I am 1 yr status post GK for my 2.1 cm tumor and am noticing some hearing improvement as you described. Wondering if this will last!

[Carolgre]

I'm sorry I have't replied before now but I haven't been on this forum for quite some time. No, my hearing improvement didn't last and I still don't know (nor do the doctors) why my hearing seemed to improve for a very short period of time. I was told before my radiation that the treatment wouldn't improve my hearing because the nerve damage from the mengioma had pressed on my auditory nerve for too long a period.

[donjehle]

Thank you for updating us on your hearing, Carolgre.

How are you doing otherwise?  Besides your hearing loss, how has your recovery gone?  I would love to hear the rest of your story.

Best wishes,
Don

[Carolgre]

Hi, Don.
The rest of my recovery went well. I had a follow up MRI a year after the radiation and it showed a slight shrinkage of the tumor. I'm feeling fine, and with the COVID pandemic and other issues, I haven't had another MRI since but I'm feeling fine with no new symptoms or problems due to my meningioma. I keep hoping, in the back of my mind, that the tumor will shrink enough to eliminate its pressure on my auditory nerve but honestly, I don't think that's going to happen. It's wishful thinking. How are you doing?
 I .

[donjehle]

Hi Carolgre!

Thank you for sharing more of your story, and I'm encouraged by it.  It is always wonderful to hear how someone is feeling fine with no new symptoms or problems.

You are probably right that you have wishful thinking regarding your auditory nerve.  I'm not a physician, so I can't say for sure, but someone once told me that the auditory nerve is like a doughnut in the sense that if a car runs over it, the doughnut is permanently flattened.  It does not bounce back up after the car passes by.  So, if this is true, then the auditory nerve, when it has been crushed, does not bounce back once the tumor shrinks away.

It would be wonderful if it did, but that is most likely wishful thinking on our parts.  It's natural that we would want that.  But it probably won't happen.  Unfortunately.   
 
I wish you the best on your journey!
Don

[mwatto]

Just had 4 year auditory report and no hearing changes - still ok (97% good ear, 85% AN ear same as before treatment.) Balance ok ...waiting to do annual MRI tho next.

[bri-82]

Hi Michele,

It sounds like you had some significant cystic component(s) before your radiation treatment. Were those internal to the tumor or external (external cyst etc...)? And were they fairly substantial in size? Glad to hear you're not experiencing hearing and balance changes at year 4. Sounds favorable!

Thanks.
~BM

[mwatto]

Hi Bri yes I had two cystic components inside the AN which was around 2 cms. These disappeared completely after the 3 x CK sessions and my AN shrank quite a bit as a result. About to have MRI for 4th year done. However so far all stable. No issues though I have had stabbling ear pain, eye pain at times - especialy after the Pfizer vx. I also had pretty bad insomniabefore and after. My nerve pain has gone - thanks to a full spectrum 3000 CBD THC tincture at night which I take with melatonin (compounded). Healthy diet, better sleep, fresh air. I continue to read everything I can on AN.

[bri-82]

Thats good to hear. Cystic components seem to make things a bit more uncertain (at least in my case) and I've been told that radiation doesn't affect the cystic components the same way as solid tumor. But it looks like it took about 1.5 to 2 years (at least based on your MRIs) for the cystic portions to diminish, correct?

I have the random eye and eyeball pains as well. Sometimes they have an additional itch or a tickle feeling to them. Unpleasant.

~BM

[mwatto]

Hi again they were gone 9 months after the treatment (thats when my first MRI follow up was) so these were dimensions : 18.4 x17 x13mm (previously 20.3 x19 x14.5) this was in 2019 after had my treatment. When I asked re the shrinking I was told (and this confirmed by the service provider of the scan also as well as my radiologist) that no cystic components visible. Every year I ask re this and my AN remains with no cysts. Profesor Joseph did tell me he thought mine was so old that the cysts were simply the AN degenerating - he said tometimes cysts are air spaces or old bleeds.  This is a quote from 2020 MRI 'COMMENT The right CP angle lesion is similar in size since 9/10/2019 with the more inferomedial placed cystic change no longer visualised. No new lesion or progressive feature.' abt to get 4th MRI. 

[mwatto]

I get stabbing eye pains to from time to time - last night woke me up. What would cause this? I had CK almost 5 years ago and MRI in March this year shows shrinking again- my worry is late radiation side effects.