cystic acoustic neuroma

[Buzzy1]

I am a newbie, and am very happy to have discovered this site.  Has anyone had an acoutic neuroma with is a little over half cystic?  Mine is 2.5 cm and I am getting very mixed opinions. The neurosurgeons say cystic tumors grow back ,are more "difficult" and I should have microsurgery to get it all out, while the radiologists say they can use gamma knife. Apparently they are rare, and I couldn't find any data that separates them out from solid tumors. Do any of you know about this?

[nancyann]

Hi Buzzy:  do your research,  I think at 2.5CM you need to do it quickly if your decision is GK.    IF I had to do it over again I would opt for GK or CK, only because I ended up with facial paralysis (it only happens in approx. 5% of cases with surgery,  but it happens ...).
I wish you all the best in your journey & decision.  If it does grow back, people have had radiation a second time, or surgery then radiation, or radiation then surgery.
So the choice is yours.

Always good thoughts,  Nancy
ps:  Hang in there Buzzy,  it's kinda late right now on a Friday night,  others who've been through GK or CK/ better outcome with surgery than me will probably chime in tomorrow.

[Buzzy1]

Thank you very much, Nancy.  This is scary to me. I don't know if the cystic part of the tumor is making it worse or if this is just something the surgeons are seizing on.
I appreciate your help.

[nancyann]

It's scary to all of us at 1st...  I have heard of cystic + tumor:  I was just googling cyst then tumor - the basic difference is its makeup - a tumor is tissue where a
cyst can be fluid, or a combination of tissue/fluid...    I don't understand why it would be more difficult to remove, but the surgeons obviously do.
Take a deep breath,  & keep a peaceful heart through this journey.  You will eventually come to a decision you feel the best with.
Always good thoughts, Nancy
ps:  I forgot - if you decide on surgery,  make sure the surgeons (usually an otoneurologist & neurosurgeon work together) do ALOT of AN removals/year - I would say at least 50 (again,  others will probably chime in tomorrow with more info). 

[sgerrard]

This is scary to me. I don't know if the cystic part of the tumor is making it worse or if this is just something the surgeons are seizing on.

I asked Dr. William Friedman (Florida) about cystic tumors during his workshop at the symposium on radiation treatment. He said that in most cases it makes no difference unless it is a very large cyst, in which case usually the tumor is too big to radiate anyway.

A good forum for questions related to radiation is the Cyberknife forum. Dr. Medbery has done both GK and CK, and is very good about answering questions.

http://www.cyberknife.com/Forum.aspx

I still think our forum is better, of course.

Steve

[Rich56]

Hi Buzzy,

Though we are sorry you need it , we are so glad you found this forum.

Finding out that you have an AN is heartbreaking to say the least.  I honestly do not know how we would have got this far in our "AN Journey" had it not been for the wonderful people on this forum, and we can never say THANK YOU enough   They are there for you, whether it is for information, or a shoulder to lean on.  Do not be afraid to ask ANY questions, remember there are no stupid questions.  Sometimes the information you find may be disturbing, but you do not need bull, you need answers, we hope you find what you need to help you make informed decisions, and some friends along the way.  Anyways, welcome to the family

Regarding your question about a cystic AN, a while back I posted this information for Dianne (crazyd925).

Here is the link: http://anausa.org/forum/index.php?topic=9292.0

My wife Scarlett was diagnosed with a 2.5cm cystic AN on 11/12/08 and had her surgery four weeks ago today, and is doing very well considering what an ANer goes through. 

With regard to radiation treatment, we looked into multi-session fractionated stereotactic radiotherapy (FSR).  The radiologist’s recommendation to Scarlett was that she have the surgery, for the following reasons:  First, Scarlett already had multiple symptoms, and that the purpose of the treatment is to kill the tumor, it would likely not reduce in size, so the symptoms would remain.  Second, the tumor had a cyst in the center of it, and the fluid could still increase which would add to the pressure and cause increased symptoms, which could lead to surgery anyway.  Third, if she needed the surgery after the radiation treatment there would now be scar tissue, which would make the removal of the tumor off of the nerves more difficult.  And fourth, there was a chance that the radiation itself, could cause new tumors down the road, and that they only have records going out about 10 years after treatment, with about 2% resulting in new tumors from the radiation.  The radiologist said given that Scarlett was relatively young (just turned 50) that she did not recommend the radiation, but rather surgery.  They never said anything about cancer.

We hope this helps you Buzzy.  You’ll be in our thoughts,

Rich & Scarlett

[joebloggs]

Hi Buzzy,

I haven't had time to read everyone's posts as I'm running late for work, so apologies if I'm repeating anything, but I just thought I'd let you know I had a 2.7cm AN which was predominantly cystic.  I saw two surgeons - one in the UK and one in Australia.  They both recommended surgery.  In Australia he said because it is cystic and it was pressing up against my brainstem, if I had radiation it wouldn't reach to the other side of the tumour, the part against the brainstem, because of the cyst part.  So I'd likely have to have surgery anyway to remove that.  Also because of the cyst part, the tumour can swell more after radiation, and with it being the size it was, that was not good news as far as the brainstem goes.  Also he said they can be more 'sticky' against the nerves so surgery can take longer than usual.  He expected my surgery to take a while.  Surgery was 6 hours though, all good, no facial nerve damage and I'm pretty much back to normal, sans hearing of course! 

Good luck making your decision, and remember, it is your decision - don't let the docs make it for you.
JB x
P.S. I wasn't told it had more chance of growing back... as far as I know, it's got as much chance as any other AN.

[Buzzy1]

Wow!  I am VERY impressed and truly appreciate of all your replies and the wealth of information you provided.  I did see Dr. Barker as well and he did recommend surgery as well for the very same reasons.  However, the leading experts on radiology say the opposite and that cysts are easier to treat with GK and CK!  It truly is very confusing.  However, my tumor also is pressing against the brain stem, and the comments about what would happen when it swelled is exactly what I asked the radiologist.

If I did go to surgery as opposed to radiation, would the recovery time be easier if they left some of it in? One surgeon suggested that while the other said it would simply grow back. 

I also got scared about reading the discussion board on recovery. Did many of you find permanent cognitive impairment? How many months does it normally take to recover from a tumor removal that size?

Thank you again all very much.

[opp2]

Hi Buzzy,

I wanted to add something even though I haven't had my surgery yet. I have accepted that it is going to take me a long time to fully recover from this surgery. I was told up front to expect to be off work 2-6 months  by one surgeon, 2-4 by the other. Thankfully I have good benefits and will be able to collect 75% of my wages for 6 months or so.

What helps me is reading reading reading! I have found in my life that those who are well informed and know what they are getting into, are best prepared to handle the results. I know it can be daunting and truly frightening. But for me anyway, knowing is far less frightening then not knowing. If you know what I mean. 

And look at the folks on here who have lingering side effects of their surgery. All living life to the fullest, enjoying themselves and trying to make us feel better. I'd say the people here are proof positive that we can do anything. 

All the best to you

[Darin]

Hey Buzzy, I had close to a 3cm AN, with retrosiggmoid-style surgery July 1st, '09. I am going back to work full-time next week, and have run 2 miles at a time several times now. It's sooo different with every person. My neuro said he had a 30 year old playing basketball 4 weeks after surgery! Unbelievable. To answer your question, I haven't noticed any cognitive impairment at all. I am taking a Human Anatomy class at a local college right now, and I find it just as difficult to learn things as before surgery  I am doing about 20 minutes of balance exercises a day, and that really helps. For a super-detailed story of me and my adventure, you can click on the little world icon by my screen name. Sorry if it's boring 

[Jim Scott]

Hi, Buzzy - and welcome.  I always regret seeing another person having to deal with an acoustic neuroma, cystic or otherwise, but I'm pleased that you've found our website and decided to check out the forums, register and post a question.  We'll try to help.  You've received some good information already and the only thing I can add is encouragement in the form of relating my AN experience.  

I was 63 and diagnosed with a 4.5 cm AN in 2006.  I underwent a partial resection of the tumor, cutting off it's blood supply and reducing it's overall siaze, making it amenable to irradiation.  Three months later, I underwent a series of 26 FSR treatments intended to - as my doctor explained it - destroy the remaining tumor's DNA.  Subsequent MRI scans have shown that the remaining tumor shows both necrosis (cell death) and some slight shrinkage.  Both doctor and patient are elated.  My recovery was relatively rapid.  I resumed driving barely  two weeks after having the surgery.  I've pretty much resumed my normal, active life.  Although I'm retired, I'm hardly sedentary.  Many AN post-op patients run half marathons and engage in other fairly strenuous physical activities within a few weeks or months of AN surgery.  However, one size does NOT 'fit all'.  Some AN post-op patients struggle with a variety of issues, but many do not or whatever they have to deal with resolves in time and with effort to rehab on their part.  It isn't all gloom-and-doom.   However, with acoustic neuroma surgery - and radiation, for that matter - there are no guarantees, as any doctor will attest.  

I join others in suggesting you consult with a doctor (or 2) that perform(s) both surgery and radiation to help avoid receiving biased opinions, which are rampant when it comes to AN treatment.  Meanwhile, I wish you the best and trust you'll be a frequent contributor on the forums as we offer information and of course, our full support, no matter what your choice of treatment to address your AN.

Jim

[Vivian B.]

Hi and welcome.

I can't offer much advice on surgery or radiation as I haven't been treated yet, but I understand that these tumors may be different such as cystic, they are all benign and they are treated the same. Difference is in size for type of treatment. Mine is a meningioma, but pathology is the same as an AN. Whether is cystic or not, there is always a chance they may grow gack.
Hang in there.

Vivian

[Buzzy1]

Thank you all again.  I don't find anyone's story boring, Darin, and truly appreciate the experiences that you and others share.  I am used to being very physically active so I hope I have a speedy recovery.  I have talked with neurosurgeons and will be talking ao a radiologist next week.  I did talk to one radiologist already. They all disagree as to which method is more likely to risk having it grow back.  I definitely am going to consult with some of the people/sites you all suggested. Just to get more confued?...

[opp2]

No, I don't think you'll get more confused. I think you'll be happy you spent as much time as possible researching and suddenly it will be clear to you what you feel is the best treatment for you.

take care. PM if you like. I think I've stopped panicking.