meeting radiologist tomorrow, some questions before I go

[Peggy]

I see Dr. Andrews and Dr. Maria warner-wasik at Jeff tomorrow, I am thinking about the gamma knife but do have a few issues, first I'm really claustraphobic (spelled wrong I know) I think they can take care of that, also my an is pressing on my brain stem a bit, what I wonder is when it swells (do they all swell from radiation?) what kind of symptoms will this cause since its pressing on my brain stem?  how long does the swelling last?  when the swelling goes away do the symptoms go with it?  right now the only symptoms I have is the ringing in my ear, some hearing loss in the left ear, but no vertigo or balance problems,  after radiation will I get vertigo and balance problems?  if so does it last long .  I know I should ask the doctors tomorrow but I thought I'd like to get some feedback from my AN family first.  We're the ones going through this not them, they just try to make it better.

thanks for any input,  I'm a bit nervous about tomorrow, its now becoming a reality.

[Lorenzo]

HI Peggy!

I had FSR, not GK, so things might be slightly different. I don't know. For what it's worth here are my thoughts on this. Others will probably give you a better answer and more GK related.

IT all depends on how much it is pressing on the brain stem. In general terms, swelling is not always present after treatment. I had it, others didn't. In my case, it had some effects, like an increase in existing symptoms, louder tinnitus and some extra hearing loss, and some short sharp pains behind the ear. However, this lasted for a limited time, and eventually the symptoms returned to 'normal', ie. pre treatment levels. All, except the hearing, still down and not likely to improve. I didn't have any problems with balance, as my balanc was already compromised years ago and the brain compensated for it. Havening swelling didn't make any difference to that, at least not to any significant level. I didn't notice.

When the tumour shrank back it seemed, the nerves relaxed a little again, so that gave me some other slight problem, all temporary and not significant. Basically, all the possible symptoms are light in general.

Of course there are two points one must say at this stage: 1) it all depends on the size and how much the AN is pressing on the brain stem to start with, and 2) we all react differently, so maybe none of the above will be your case, or all of them, or worse. Best thing to do is to talk to your radiosurgeon and ask him those questions, they will be able tot ell you what the possibilities are of problems due to swelling.

Hope this helps...  Good luck tomorrow!

Ciao, Lorenzo

[mema]

Peg,                                                                                                                                                                                       


I answered your PM,  let me know if you got it.  My AN didn't swell.  I had vertigo issues long before my radiation.  I lost my hearing on the AN side 6 months after radiation.  Many people no matter what treatment they have, get side effects.  But as I said before the people who don't post on this forum because they never had a single problem with treatment is most likely more than those of us who do.  Try not to worry, you are in great hands with TJH.                                                                                                                   



                                               mema

[sgerrard]

One thing I have noticed in posts on this forum concerning large ANs, is that the brainstem seems to be able to tolerate quite a bit of pushing before it starts causing problems. Sometimes it seems amazing that it can bend so much without causing any symptoms.

Although the swelling from radiation can be enough to increase your symptoms, and can sometimes make hearing worse, it doesn't seem to be enough to cause big new symptoms to emerge. I think it is usually reported as a 2-3 mm increase in size.

I do remember reading about one person who had a 3-4 day bout of balance problems that occurred some weeks after radiation treatment, but I don't recall seeing anything worse than that.

Given that any one case can be an exception, I think the usual expected outcome is that the hearing stays about the same or may get worse, you have some temporary symptoms of various kinds during the first six months or so, and you get to keep the ringing in your ear forever.

I hope your appointment goes well.

Steve

[kat]

Hi Peggy

I had fairly minimal symptoms before my GK and have not had any major symptoms during the last 30 months post GK. I had a spell of headpain which was a bit like neuralgia 8 months after GK which concerned us enough to have an MRI scan which showed no change in the size of my AN. I have had some minor dizzy spells and some weird tingling sensations just lately but I am not even sure if they are AN related . All in all there has been no swelling so far and my last MRI almost a year ago showed signs of the AN shrinking slightly . I suppose the exact location of your AN will determine what if any symptoms you will have after the radiation treatment. Good luck with your consultation.

Regards Kat