AN which is NOT in the IAC...?

[calimama]

Hi all,
Just wondering if anyone out there has had GK (or any treatment really) for an AN which is in the CP angle /cistern? Mine is in the space between the brain stem and the IAC. It does not originate in the IAC, but there is some growth now going into the IAC. It is 2.2x2.9cm.

I am interested in GK as treatment option... i assume this is an option for a tumor of this size and location? Any experiences? Results?

Perhaps a dumb question (not my first, and probably not my last!) but can doctors tell from the MRI how much other nerve (face, hearing) are impacted by the tumor? Can they see the nerves on the MRI? I am planning a trip back to my ENT for more questions before meeting GK&surgeons, but just curious.

Thanks one and all!

[sgerrard]

Calimama,

You should try the cyberknife forum. Even if you are considering GK, not CK, the forum has several doctors who answer questions, and much of it applies to radiation treatment in general. Dr. Medbery, for instance, has a GK machine at their facility in Oklahoma, as well as CK (or they used to, anyway).

I think they could give you an idea of whether radiation is reasonable for a 2.2 x 2.9 AN; how big an issue the closeness to the brainstem would be; even what the chances of encouraging regrowth by getting pregnant would be (a question you asked in another post). Some of the doctors will also accept an MRI on CD through the mail, have a look, and give you a free opinion on it.

The link is http://www.cyberknifesupport.org/forum/, and info on the doctors there is at http://www.cyberknifesupport.org/about_the_doctors.html. Try the General and Brain forums; there are usually several threads going on ANs; and you can always just start a new one.

On the MRIs, the nerves mostly show up as shadows or thin lines; they can tell where they go sometimes, but can't see enough detail to say exactly how they are interacting with the AN. On my MRI, the radiologist noted some "displacement" of the facial nerve, for instance.

Hope all goes well...

Steve

[calimama]

Steve,

I have not visited so those sights but that sounds like a great idea. I will certainly do this.
Thanks for the tips!

[Sheryl]

Hi Calimama - were you definitely diagnosed with an AN?  I have what is like an AN but is on the 9th cranial nerve and sounds like the position that yours is in.  AN's grow on the 8th cranial nerve - so everything is quite close in there.  Either way, treatment with CK or GK is the way I'll go if/when it decides to grow.  I've waited and watched for 6-1/2 years with very little growth or symptoms.
Good luck,
Sheryl

[calimama]

Sheryl,
Thanks for your post.
I can't say i am 'sure' it is an AN, but that is what i have been diagnosed with. That was what i had the MRI to rule out. The report (albeit short) from the MRI technician says that whatever i have going there it is consistent with an AN. My ENT, who i believe is probably a good one, did not suggest and doubt of this diagnosis, but certainly is it something i will raise when i have my surgery and GK consultations.
From what i have read, it is not common for ANs to start where my has, but they represent about 10% (i saw that number in one article). So i now i am 1 in 1,000,000 instead of just 1 in 100,000. Fabulous.

Steve,
Have been on the CK forum. Only got one response from one of the experts there. He said that they have GK'd ANs that size, but he would recommend fractionation (i am not sure that they do that with GK here. pretty sure they don't). It's a good site though, lots of great info and support. Thanks again.

[sgerrard]

Calimama,

I read your post on the CK forum, and Medbery's reply. He often seems to have short answers, doesn't he? Since you don't have CK up there, I think you should ask him whether he would pick GK or Linac on one of newer machines (don't know if they have Trilogy or Novalis or some other kind). Those machines can do fractionation. Though they are often used for 4-5 week fractionation, some can also be used for 5 day treatments. I'd be curious what he has to say.

Can you wait another year to get pregnant? It sounds like the advice they are giving, since apparently it has a tendency to promote AN growth.

I  wonder if you have looked at posts about patients who had both surgery and radiation, where the surgery is done to reduce the bulk, but parts are left in to avoid damaging nerves. Then the residual tumor is radiated to polish it off. Since you are now 1 in a million, you deserve special treatment. 

Steve

[Mark]

Calimama,

I also saw your post on the CPSG site and I would agree with Steve to ask Dr. Medbery his opinion of the machines you have available to you in Canada. My own interpretation was that he was talking in context of CK vs. GK and advocating fractions with CK only because of it's probability of higher hearing preservation rates than one dose GK. My bet is that if the choice is between GK and a FSR machine he would suggest GK because of the higher accuracy.

On the pregnancy issue, having read his responses to similar posts over the years, I believe he was saying that there is evidence that some AN's can experience accelerated growth due to hormones associated with pregnancy, so it would be better to get the AN treated and give it a year  or so to verify it was dying before trying to get pregnant.

Steve's right that he does give short answers some times, but he is also consistently rated as one of the top docs in his field in the US and he is the most dedicated and consistent physician responding to posters freely on his on time, so I cut him some slack  . Candidly, I think the man is a saint for what he does for people, especially when most provide very little information for him to assess.

Mark