AN with cysts

[kathy g]

I discovered my AN and another mass on my skull in October 2008.  The House Clinic says that both of them have cysts. 

Just had another MRI and they measured that both have grown 3 mm, which does not seem very much to me.  Is it?

one was 16 x19 mm and is now 22 x19x19 mm

the other was 12x12x21 mm and is now 12 x 16 x24 mm.

Trying to figure out what to do, have the operation or the gemma knife? 

I have been seeing an acupuncturist, which has helped. Have headaches off and on, but aspirin helps.

Have to say, I am a nervous wreck.  Have read a lot of the posts and have learned a lot.  Thanks so much.

[jazzfunkanne]

kathy is it two AN's on both sides or each side?

[joebloggs]

Hi Kathy,

My AN had a big cyst inside it.  My first MRI was in May last year and at that stage the AN was 2.4cm.  Long story but I didn't get my MRI results until Sept that year... I then had another MRI in December, the AN by then had grown to 2.7cm.  As you say 3mm is not much growth in the grand scheme of things.  From what I've read they usually only grow about 1-2mm a year.  So 3 mm in less than a year is more than usual and I was told it was due to the cyst growth as opposed to the actual tumour growing.  However as the cyst is inside the tumour it has the overall effect of causing the tumour to be bigger... if you get me.  Although it's not much when you're looking at an AN that's over 2cm it's probably (in the case of mine anyway) starting to move towards the brain stem and push into it which is when you want to do something about it.  I'm not sure where your other mass is so I'm not sure what your options are there.. but I would say given the size of yours you probably still have both gamma and operation as options.  Mine, because of where it was (pushing into the brainstem) and because of the cyst inside it and because of the size, it was judged too risky for radiation - they said the cyst would stop the radiation getting to the other side of the tumour etc etc.... so I had surgery 4 weeks ago today and it was a success.  I'm really happy, tumour is gone, facial nerve intact, feeling great.  I think people on the forum who have had radiation will be able to give you more advice on that than I.  All I know is that for me it wasn't an option, but it may well be for you.  

It's scary stuff when you first get diagnosed, I know how you must be feeling.  Take a deep breath.  Know that your AN is absolutely treatable and it sounds like your other mass is too.  You have time to make a decision, you're doing the best thing in researching your options.  You can make the best decision for you when you have information about the different options.  Once you make your decision I hope you will be a lot calmer and feel good about the decision, that's how I felt.

Good luck, I'm sending you some relaxation vibes, I hope they work.  Take strength from all the lovely people on the site - they helped me a lot!

xx
JB

[EJTampa]

Kathy,
 
3mm in 6 months is pretty fast growth, although as JB said, it's probably related to the cyst.  I'm not sure what to make of the other one you have on your skull.  In any case, your AN is getting close to being considered large.  I think it would be prudent to discuss treatment options with your doctor.  You mentioned you are struggling with the decision to have surgery or gamma knife.  I had surgery and had a great outcome, but there are risks involved with both choices.
 
I understand that you are frightened at the prospect of having this treated.  We all were!  Most of us found our way to this forum just like you did.  We were handed our diagnosis with not much more information than "you have a benign tumor in your head".
 
I don't know if this will help you, but for many of us, the decision making process was the hardest part of the whole AN journey.  The second hardest part was waiting for treatment day to come .
 
I'm sure you have lots of questions, and I'm pleased to tell you that there are many people here who are happy to answer them.  Fire away!
 
Ernie

[kathy g]

Thanks for your responses.  One of the masses is in my ear and one is on my skull.  The other complication with this is the doctors do not know what the other mass is.  The fact they are both growing might mean they are cancer.  I have had a number of doctors look at the MRI and some say they are and some say they are not.

I guess, if I could figure out what they are, then I could know better what procedure to have.  They recommend a spinal tap or doing a biopsy.

UGH!