Update: 6 years after Gamma Knife - Regrowth

[BusyBonnie]

I've been away too long from this forum but wanted to finally update everyone. After my Gamma Knife in 2006 I had an MRI 6 months later. Unfortunately it showed no signs of necrosis. I was supposed to get a follow up MRI 1 year after radiosurgery. We lost our insurance and I had no way of finding out if my tumor died. Finally, in April this year (2013) I was able to get another MRI. My tumor has grown. 
I was feeling so much better after Gamma Knife for awhile until recently. Now my vertigo is back and balance has worsened. I now have pain intermittently behind my ear, some facial pain, and I think my hearing may be worse in that ear. My neurosurgeon is scheduling radiosurgery once again. The type will be determined by my insurance so will either be Gamma Knife or Linac. Anyone else have Linac for theirs? Anyone else have theirs continue to grow after radiosurgery? Mine is still small at 1.33 cm but the pain is why I plan on radiosurgery again. Just curious on your thoughts about this. I just keep wondering why it didn't work the first time and is it even worth doing again. Microsurgery is out of the question because my husband is disabled and my job is our only income right now until he gets approved for disability. Thanks all and hope everyone is doing well.

[nftwoed]

Hello;
   Was wondering what the original size was in 2006? Of course, there is no way to know whether it shrank before it enlarged?
   I just question if irradiation had no effect on your bodies DNA to stop replicating tumor cells, why it would now?
   Typically, it's surgery>radiation>surgery. My feeling is you will lose some hearing this radiation attempt. Maybe not right away, but within 3 years or so.
   Re, the facial nerve, it's pretty safe with mid fossa given your AN size. The nerve is monitored during surgery. The facial nerve lies right on top the IAC just under bone.
   If it's an intracanicular AN, most don't give pain at that size. 1.33 cm is barely 1/2 inch. I've had eposodes of pain, post TL from a 1.5 cm. AN. Cause unknown. The R side AN of 1.00 cm. produces no pain and I think sometimes the pain issues of small ANs are idiopathic in nature.
   Best wishes in whatever happens your situation!

I've been away too long from this forum but wanted to finally update everyone. After my Gamma Knife in 2006 I had an MRI 6 months later. Unfortunately it showed no signs of necrosis. I was supposed to get a follow up MRI 1 year after radiosurgery. We lost our insurance and I had no way of finding out if my tumor died. Finally, in April this year (2013) I was able to get another MRI. My tumor has grown. 
I was feeling so much better after Gamma Knife for awhile until recently. Now my vertigo is back and balance has worsened. I now have pain intermittently behind my ear, some facial pain, and I think my hearing may be worse in that ear. My neurosurgeon is scheduling radiosurgery once again. The type will be determined by my insurance so will either be Gamma Knife or Linac. Anyone else have Linac for theirs? Anyone else have theirs continue to grow after radiosurgery? Mine is still small at 1.33 cm but the pain is why I plan on radiosurgery again. Just curious on your thoughts about this. I just keep wondering why it didn't work the first time and is it even worth doing again. Microsurgery is out of the question because my husband is disabled and my job is our only income right now until he gets approved for disability. Thanks all and hope everyone is doing well.

[BusyBonnie]

I had the same thought about irradiation not working again. Unfortunately, I can not miss work for more than a couple of days and microsurgery would definitively have me out for longer than that. My neurosurgeon basically just gave me both options so I chose irradiation. Also, vertigo is terrible at work and makes it hard to do what I do, I'm a waitress. It's not so bad that I can't work but does make it more difficult. I watched the tall bread cart wave like a snake, pretty wild. As for the pain, it is very intermittent but seems worse some days. Sharp pain behind my ear and then radiates over the ear. I end up grabbing the side of my head and holding it until it subsides. My AN was 1.1??? cm before GK and now is 1.33 cm. My neurosurgeon said it has definitively grown and when I tried to tell him that I knew sometimes they round up on the figures so I wasn't so sure, he reiterated that it had definitely grown, almost like it was a concern. He wasn't my original neuro so this is only the second time I've seen him.

[mindyandy]

That doesn't seem like a big difference IMO.  Feeling pain from time to time? I had CK 2008 then surgery 2012. I developed trigeminal neuralgia. I sure hope whatever the decision things work out.

Mindy

[producer]

I have to say that my specialists here in London have said on numerous occasions that a 2mm difference and even 3mm in MRI is NOT always a confirmation of growth.

This is due to difference in different MRI machines, also difference in slice thickness even if MRI done on same machine. Also the tumors actually move with time , compress slightly different (maybe elongated a bit) etc..

Your 'growth' IF its grown is minimal. I would try obtain a more solid confirmation that it is in fact still growing.

[robinb]

I think you should send your MRI history to another doc for a 2nd opinion.

[windy]

I have to agree with others who suggest another opinion. I would be hesitant to have more radiation with only a 2 mm difference. It could be you have had some swelling of the tumor at some point in the past six years and it settled there and never decreased in size. It could even have been greater at some point and reduced down to where it is now. Without the follow up MRI's there would be no way to tell.

As far as your symptoms, they are not unheard of post radiation treatment. I, too, have pain near my ear on an intermittent basis, mild facial sensations, lost 60% hearing post GK, and have had some dizziness. In my case I have a tumor that increased more than once in the follow up scans in the years that followed and now is going back down, years later. I think radiation alone can cause some issues, but may not necessarily be a growing tumor.

My local neurosurgeon felt I should wait and see what the tumor was going to do at the four year mark. My GK physician felt I needed more treatment. For a third opinion, I followed up with Dr. Friedman in Los Angeles at the House Ear Clinic. He reviewed my scans and did not suggest surgery and wanted me to wait to see what the tumor did in the future. He is a wonderful help and is giving with his time.

I wish you the best in your decision making. Please don't hesitate to get a second opinion.