Anyone else have a large tumor?

[xiphias]

Dear internet,

I've just been diagnosed with a large (3.7cm) AN on the left side, and I am utterly terrified. I have an appointment with a neurosurgeon in a week and a half; I don't know yet what he'll say, except that I assume the only viable option is surgery because the tumor is too large for radiation and it can't be left alone because it's already pressing on my brain.

Symptoms so far include almost-total single-side hearing loss, tinnitus and imbalance. Now that I'm hyper-aware, I've also noticed that I occasionally have issues swallowing and the left side of my face is very slightly numb -- not anything I would've picked up on if I weren't checking for it.

Everything I research says that large tumors are more prone to complication. I'm panicking at the thought of facial paralysis. A large part of my job is public speaking, to say nothing of my own social comfort. I'm 37 years old. I found out about this six days ago. Someone please tell me it will be okay.

[terisandler]

Nobody can guarantee an outcome for you but please know that you have the prayers of your AN family holding you through this journey.  There are several Facebook pages dedicated to AN & my experience (from spending too much time on Facebook) is that the members of them are another wonderful source of support.

You are going through this process in a much more accelerated time frame than most so your panic is understandable.  It may be helpful for you to try breathing through your panic and visualizing the best possible outcome you can imagine!  Good luck!!!

[Echo]

Make sure you source out the very best neurosurgeon you can find to do your surgery.  One with plenty of experience removing AN's.  The risk of complications can increase with the size of acoustic neuroma's, so you really do want someone with an excellent reputation to do your surgery to help limit the risk of those complications.  There are no guarantees with any procedure but there are many people who have had successful surgeries.  I wish you the very best of outcomes.

Cathie

[LakeErie]

My tumor was almost 5 cm. I had a subtotal removal of 95% to 97% of the tumor to preserve my facial nerve. After surgery I was House-Brackmann scale II, scale I is normal. In 10 days I was back to normal in facial movement.
I had extensive involvement of the 10th cranial nerve, the vagus nerve, and it affected my vocal cord and swallowing. I began to regain use of both at about 8 months and improved through the 16 th month and am close to normal in both repects now.
Most experienced surgeons today aim for facial nerve preservation. Discuss this with the doctors you see. You will probably be fine. Good luck.

[Jim Scott]

Xiphias ~

Not every AN experience is a horror story and not every large AN is going to guarantee complications.

After procrastinating far too long, my increasingly severe symptoms (loss of equilibrium, stabbing pain at what I later learned was the AN site, complete loss of unilateral hearing and loss of the sense of taste) I saw my PCP and he first had me tested for a sinus condition (to explain the loss of taste) and when that yielded nothing, he ordered an MRI.  The scan revealed a 4.5 cm AN that was pressing on my brain stem.  After a false start I was fortunate to find a mature neurosurgeon with decades of experience removing acoustic neuromas.  He was extremely knowledgeable, compassionate and treated me like a VIP.

My biggest fear was facial nerve damage and this considerate neurosurgeon prepared a two-step plan to rid me of the tumor while doing everything possible to avoid facial nerve damage.  He 'de-bulked' the tumor (peeling off layers) in a 9-hour operation.  That reduced the tumor to approximately 2.5 cm and 'thinned' it, considerably.  My pre-op symptoms disappeared almost immediately and my facial nerves were undamaged.  I was discharged from the hospital within five days and recovered relatively rapidly. 

Ninety days later in a planned procedure stage, I underwent 26 FSR sessions (total of 27 Gy) intended to destroy the remaining tumor's ability to re-grow.  These were a bit tedious but otherwise uneventful and I did not suffer any side effects.   Subsequent MRI scans indicated tumor necrosis and the early stages of tumor shrinkage. 

This occurred in 2006 when I was 63 years old.  Today, I'm doing great and have no real issues relating to the AN.   

Although no one can predict much less guarantee the outcome of anyone's AN surgery, being in otherwise good health (I was - and remain so), securing the services of a top-notch neurosurgeon with extensive experience in AN surgery and maintaining a positive, optimistic attitude are all necessary to help one get through this otherwise daunting medical adventure.

Jim

[Tod]

Xiphias,

I am one of those odd cases. The largest dimension of my tumor was about 4.4cm, it was a little larger than a golf ball. I had serious compression of the brain stem. By the time I realized I had a problem, followed by an MRI, and diagnosis, I was told I had to three to six months or face coma and possible death. I had 32 hour surgery (yes, that is wayyyy unusual) in which they were able to remove up to 95% of a tumor well connected to the artery. I spent six days on a breathing machine and another week in ICU. I went home, rather than into rehab as some doctors wished, and spent the next 10 weeks getting better. I did suffer from paralyzed vocal cord and swallowing difficulties. Like you, public speaking is a big part of my job, so when I did go back to work, it wasn't easy, or pretty. But it all worked out with a series of injections and as we were about to schedule a surgical implant a year later, I had enough improvement to say "No, thanks."

The tumor demonstrated new growth 18 months after surgery, so we embarked on 28 sessions of FSR.

Close to four years later, I am, and have been continuously, pretty awesome. My voice is almost normal. My swallowing difficulties are real, but essentially minor.

Lots of people here have had big tumors and kind of cruised on through. In fact, some of those that have had the greatest challenges had very small tumors.

Life is good.

Tod

[xiphias]

Thanks so much, everyone, for the kind words. I am mostly okay with what's going on, but I have my moments (as per my post last night) and I'm really grateful for the encouragement and support.

I do realize that no treatment is guaranteed; it's just so easy to read up on large tumors and find nothing but terror and doom. I'm glad to know that other people have gone through this and are doing okay. I'm planning to talk to my neurologist about partial removal and possibly radiation, though of course I'll be open to the treatment he most recommends. I haven't met him yet but I know he is a highly respected expert and others have been very happy with him, so I'm hopeful.

[Suu]

G'day xiphias
I was also diagnosed only a couple of weeks before surgery to remove a 4cm AN.  I didn't read up about it because I felt ill, lost hearing, and quite shakey so didn't get on the computer.  It never dawned on me to ask questions as the doctors put me on steroids and told me what they were going to do and I went along with it because they have the paperwork that says that they are Gods LOL
Arm yourself with questions (as I see you've started to do) so that you aren't overwhelmed at the consultation.
Whatever fate has in store for you is going to be ok because we've all been there and we all will be right here to be your soft place to fall if you need to.
Will come back more often to see how you're going.
Like Teri said - Facebook has quite a few friendly pages but this site has the best way to search for answers IMO. 
Hugs,
Suu xxoo

[DIZZYGRAN]

Hi I understand just how you are feeling.  Your symptoms are exactly like mine.  I have a 3.1 tumor. I have no sensation in my left ear at all.  I am completely deft at that side but somehow I dont notice it at all.  The worst thing is the numbness in my face and my lips and gums are also numb like I just left the dentist! It is scary isnt it when you start to go into all the things that may happen.  However, we have no choice so we must try very hard to be positive.  Hope you can come to terms with it in a little time and hopefully the surgery for for you will be successful.  At least you have youth on you side if nothing else! Im a doddering 65 year old !! Good luck for the future they are a great lot on here and have helped me loads

[v357139]

Xiphias - I had 3.5cm I also had lost hearing, a little face numbness on that side,  some saliva and swallowing issues.  Lost alot a taste in my tongue making most food taste bad.  I had total removal 7 weeks ago with essentially no problems, and most of my taste is back.  So have hope!!!

Not all the docs are the same, so you might want to get several opinons.  In case you do not know, you can send your MRI to the House Clinic for a free phone consult.  They do the most per year of any place.  Many people on this forum have gotten a phone consult from them, and many have flown out there for surgery, including me.  They were great for me.

Pick a team with lots of expereince and a good track record, and you stand a great chance.

[DIZZYGRAN]

I was pleased to hear that you got your taste back.  I also have problms with dry mouth and no taste  but I thought it would always stay like that.  Its given me hope!

[v357139]

Yes I was at the point where I was having trouble eating because most food tasted really bad.  I had lost alot of weight.  Post op it is not perfect but has improved a great deal.  I can enjoy food again, and have gained back 20 pounds!!

[BoedyGirl]

I am 24 and I went through surgery five months ago today to remove my 5.4 cm AN and I am completely ok now that it is gone. I didnt have any facial paralysis afterward just a little numbness right after surgery that went away after a few days. i was in the hospital for 5 days after surgery and the worst part was the day afterward due to a really bad headache, but other then that my recovery was flawless. I am deaf in the affected ear, but that really isnt as bad as i anticipated. Try not to worry too much technology today is remarkable and I am so happy with how my surgery went. You will be just fine after this and my most important advise is to get up and move as much as possible after surgery (I was up and walked a lap around the ICU the night of my surgery) because it will help your recovery process overall. You are going to kick this things butt!

[HlavaDerava]

You will be fine.  Just as I will. And others who will be diagnosed.

Is it unfair that I am the 1 in 100K?  Perhaps.  Am I scared?  You bet.  Can I do anything to change it?  No.  I have i;, now I will deal with it.

I just look at it as another challenge thrown my way, my destiny if you will.  But we will overcome, we will be fine.  Stay positive, but realistic and even thought this is not an easy disease there are countless others that make AN seem like walk in a park.

That thing in your head will have its days counted and soon while you will be around for decades and decades enjoying your life to the fullest.  And plan to do just that.  Because life is beautiful and no tumor, no matter how big or small should prevent you from enjoying it.

[xiphias]

Hi everyone,

After the whirlwind of that first emergency diagnosis, I'm now six weeks past surgery and doing fine. I wanted to post an update here in case someone else ever comes across this thread when they're alone and scared.

The AN turned out to be just under 5cm. The surgeon removed about 90% of it via retrosigmoid approach -- a full removal would have threatened my facial nerve. As it is, I have a little scalp numbness and there's still a weird taste in the side of my mouth, but life is otherwise back to normal. If the remaining tumor regrows, that'll need to be addressed in future via radiation or another debulking, but it's under control now and I'll have a lot more time to process and consider the options before any other steps need to be taken.

Thanks again to all of you for your kind words. These message boards are a great source of information and support. Best wishes to all.