Cerebellopontine Meningiomas

[Vivian B.]

Hi there,

Some of you know me from other posts. Has anyone out there been diagnosed with one of these and if so can you provide some information?

Thanks.

Vivian

[anna]

Hi Vivian,

I have a CPA meningioma (cerebellopontine angle) on the left side. I was diagnosed in April 2006 and had radiosurgery on it in March 2007 in Australia. I contemplated surgery but was too afraid of the risk of damage to the facial nerve. So far my MRIs have shown no growth. Let me know what information you need and I'll be happy to share.

Anna

[mallory]

Hi Vivian,

I'll be honest that I don't actually know if my official diagnosis was a cerebellopontine meningioma, but early on I was diagnosed with a cerebellopontine angle tumor, and was later told that I had a meningioma, so this all sounds familiar to me.

I had surgery to remove part of the tumor in December. There were a lot of concerns about my swallowing nerve because of the position of the tumor, and I did have some complications from surgery but I'm on the road to recovery now. Feel free to send me a msg if you have any questions!

[Vivian B.]

Hi Anna and Mallory,

Thank you both for replying. It's nice to find people with the exact same thing that can relate to you. Anna did you deal with the waiting after radiation surgery and does it get better?

Vivian

[anna]

Hi Vivian,

I haven't been logging on here for a while - hence my late reply. The 'road' after the radiation has been up and down for me; I 've had good periods and not so good periods when I've had episodes of dizziness, increased facial numbness and just not feeling 'right'. My MRI 9 months post radiosurgery showed that the tumour was stable (no growth); just had another MRI and waiting for the results - keeping my fingers crossed that all is well, especially as I'm again having one of those 'feeling worse' episodes. What's your situation now? Are there any other questions that you have regarding meningiomas etc. ? Hope you are well...
Anna

[Vivian B.]

Hi Anna,

Just noticed your post. Thank you for sharing. My next MRI is in Sep 09 and then they will determine whether I need treatment or not. The surgeon that I saw referred me for assessment of radiation gammaknife as this the only radiation treatment available in Canada right now, he thought that this was the better way to go since I had the option rather than invasive surgery. I am now being followed by a Neurosurgeon who specialiizes in radiation and and Oncologist.I  have good and bad days, but can't complain, most of all is just the unknown feeling of having to deal with treatment and the aftermath of treatment. I am not that familiar with the treatment that you had, can you explain what it is if you don't mind?

Vivian

[msmaggie]

Hi to all,
 
I'm a bit late chiming in on the discussion.  I had surgery for a 1.9 cm cpa meningioma last Dec.  I'm absolutely fine.  My only complications were in healing.  I had a csf leak that led to meningitis.  That slowed things down a bit but now I am back to work w/no hearing, facial or balance issues.  I considered radiation but decided I wanted to know up front what ,if any, side effects I was going to be dealing with.So far so good!

Priscilla

[mimoore]

The Drs were not sure if my tumour was a meningioma or an AN. Once it was removed it was found to be an AN. I did find a great site called Meningioma Mommas. I met a wonderful woman who suffered hearing loss and facial paraylsis after removing her CPA memingioma.
Very supportive and kind like the people on this site.
Michelle

[Vivian B.]

Hi Prescilla and Michelle,

Thank you both for replying. Prescilla, what type of surgery did you have? Michelle, I also went on the mengiomamomas forum and found it very helpful. My surgeon though explained that the only reason why they call it a mengioma and not an AN is only location, but that otherwise they are both treated the same and they are both vascular. Glad you are both doing o.k. At first I thought I was the only one with this rare condition.

Thanks again

Vivian

[anna]

Vivian,

I had radiosurgery (a large dose of radiation in one go) in Australia on a BrainLab machine. The radio-oncologist explained to me that there are several types of machines used for radiosurgery: the one I had, Novalis, Gamma Knife and Cyberknife, with generally similar outcomes. All of them offer non-invasive treatment with one large dose of radiation or several doses (fractionated radiation). My treatment and the Cyberknife use a special mask to stabilise your head during the treatment, and I believe that Gamma Knife uses a halo-type contraption to keep your head still. The treatment itself was rather a breeze (took about an hour in total). What I wish I was more aware of before is that unlike surgery you don't get immediate results - and sometimes this 'waiting' and not knowing whether the radiation worked can be stressful. But each case is individual. Your meningioma is rather small isn't it - do you have any symptoms?

Anna

[msmaggie]

I had a retrosigmoid.  The difference in the tumors is where they originate.  An AN is on the hearing nerve.  A meningioma is on the meninges-the three layers of membranes that surround the brain and spine.  Mine was on the dura layer.  The surgery is basically the same as for an AN,(my tumor was growing into the IAC ) but depending on the location of the tumor, you have a better chance of preserving hearing and they don't usually clip the balance nerve.  You still have to recover from brain surgery, but again, depending on where your tumor is, you may get lucky and have fewer side effects to deal with.  Good luck!  I came out just fine.  Before surgery, I had no symptoms whatsoever, and I really wanted to keep it that way!

Priscilla

[Vivian B.]

Hi Anna and Prescilla,

Just saw your replies. My symptoms are the same as anyone with an AN. Ringing in the ear, fullness, earache, lost 30% of my hearing and 49% of my balance nerve, but so far all manageable. They call CPA meningiomas Acoustic Meningiomas and your are right Prescilla, it is because they originate from the meninges but still skull base. I am not sure how this is related to the spine as you have mentioned. Would these cause any back aches? I do experience back aches from time to time and I never really had back issues before and all the doctors that I saw never mentioned any back relation to this CPA meningioma.

Thanks for replying. Everyone has been very helpful. I guess we all have to hope for the best.

Vivian

[msmaggie]

A menigioma can occur at any place on the meninges, which does include the very upper part of the spine where it joins the skull. I don't think a CPA meningioma  involves the spinal area, so your backaches should not be caused by that. The CPA is the area of the skull behind your ear, hence the confusion w/ an AN.

Good luck w/your research!  Stay in touch .

Priscilla