Here to stay!

[Keeping Up]

Hello everyone

Thanks for all the posts and words of encouragement over the past few weeks - and gosh, darn, like you all so much, I have decided to stay.  After 2 weeks of waiting, got the official word this morning that it is a AN, but just a teeny weeny little guy at 5mm x 8mm (my husband and I had some discussion whether it was .5mm x.8mm - but I do think we translated to cm immediately, but then kind of forgot - so fair warning, I may be back to just say it is darn near microscopic).  The doctor agreed that some of my symptoms were definitely anxiety related - and that my jaw has gone back to cracking dandily (probably clenching my teeth at night).

The current course is to follow up with a MRI in 6 months to monitor for growth.  He felt that the 5mm x 8mm is simply too small given the risks of surgery.  He suggested the basis of odds for surgery (he explained 2 of the 3 approaches - got half the language down but certainly not all of it) aren't the best - 1 in 5 to save hearing in the ear, and 1 in 20 for any type of palsy.  Given my small AN, it just doesn't make sense.  He is comfortable with small ANs up to 2 cm (and as long as they stay in the canal), so I can have darn near explosive growth in the next 6 months, and still be well within that 2cm 'safety' range.  We can wait and see what 6 months shows, and then maybe even the 12 month (then yearly thereafter).  WE will also track my hearing to watch for any deterioration.  He wasn't that keen on the radiosurgery option because of the uncertainties with respect to long term malignancy (i.e 20-30 years down the road).  I am 37 years old so that is obviously a highly viable time frame for me.   

Does that make sense to any of you?  I am very comforatable waiting for 6 months, and then seeing where the next step may be.  I think I have generally accepted that surgery will more than likely happen in the next 5 (or maybe 10) years - but not going to worry about it too much right now.

Also, he suggested that really no symptoms will truly indicate whether I have experienced growth - diminished hearing or worse vertigo.   Is that been other people's experience while the AN is still very small.

Oh, another question - my tumor is all within the canal (will get the official term and be back).  He suggested that his their biggest 'flag' of concern once it emerges from the canal.  Is that a common concern?

BTW - I have to admit, I have had a bit of blast telling people I have a brain tumor.  Some of my co-workers knew of the hearing loss and MRI (and today's follow-up) - the mention of brain tumors certainly stops people in their tracks! 

Finally - I also admit, this is by far the best outcome from all my fretting.  I was truly worried that I had some unknown hearing loss issue with an unknown prognosis/hearing future on the one side - then my other fear was a large AN and the post-surgery complications (surgery was less worrisome).  This way, I do believe I have the best of both worlds!  Weird - or perhaps simply naive.  I might wake up somewhat more panicked tomorrow!

I am sure I will have many questions for the watch and wait peoples so will visit that side of the forum soon.  I want to also see other people my age with similar sizes and why they made the decision they made - just curious!

Interestingly, I am getting some articles from the doctor (one is quality of life for the ANers written by another doctor in the office - actually Calimom/Trish) as well as other studies.  My BIL also has access to studies and will get me some tinnitus research as well.

Enough!

Ann

[Keeping Up]

Oh more questions ...

1. What are balance tests?

2. Why are some AN measurements with 3 meausrements (i.e. spherical - 1.4cm x 1cm x.8cm) versus 2 measurements (perhaps circular - 5mm x 8mm) versus just 1 meausrements (who ha the 4.5cm sucker?)

[sgerrard]

Hi Ann,

Sounds like good news, if have to have an AN. I will try to answer some of your questions.

I doubt it is microscopic, an MRI is only good down to 1-2 mm (the spacing of the slices). So I'm sure it is 8mm x 5mm.

Many people refer to the size of their AN by its largest dimension, but the radiologists who read the MRIs will always do all three measurements.

With mild symptoms and a small size, watch and wait for six months makes good sense as your first step.

The onset or increase of symptoms may or may not indicate growth, but they at least suggest activity of the AN and changes in the area. I think they are a good basis for deciding to take action earlier rather than later. For any treatment, smaller is better in terms of good outcomes. Once they are out of the canal, other nerves and the brainstem itself come into play.

If malignancy is your only concern about radiation, I think you should consider doing Cyberknife or Gammaknife. On small tumors especially, it is a good way to go, with better hearing preservation and lower facial nerve risk than surgery. There are so few cases of malignant AN after radiation that a rate can only be estimated, and no one is sure if it is really any different from the background rate. Sandra posted an article two months ago that gives a good overview of radiation treatment: http://www.emedicine.com/ent/TOPIC668.HTM#GammaKnife.  "Eight case reports of malignant transformation of acoustic neuroma can be found: 2 followed external beam radiotherapy, 2 followed stereotactic radiotherapy, and only 4 were spontaneous."

Since you will have six months, I would also suggest taking a look at the Cyberknife forum, and posting a question or two about the chances of getting a malignant AN. There are two very experienced radiation oncologists who answer questions there, and will set the record straight for you. They can provide lots of information about other issues as well, such as possible swelling during the year following radiation.

There are a number of balance tests and measurements of balance nerve function, ranging from walking heel to toe for the doctor, to wearing video goggles and having your eye movements monitored in various positions, or with water in your ears. I found them pleasant enough, and they can help identify what the AN is up to and how well your AN side balance nerve is working.

Take care,

Steve

[Dog Lover]

Ann,

It's been several weeks since I've logged on, so I haven't seen any of your other posts.

After reading your post I was surprised that you said that your dr. said that a 5mm x 8mm AN was just too small for the risks of surgery, and also the statistics that you were given. My AN was 9mm x 3mm. I had surgery almost 4 months ago. The statistics I was given was that I had a 70% chance of saving my hearing, 5% for facial nerve damage or spinal fluid leak, and that he thought that I should get it taken out then while it was small (mine also was totally in the canal or whatever you call it.)

I guess I will have to do some catch up reading to see where you are going, etc.

Good luck in whatever path you choose to take.

Cathy

[Keeping Up]

OK ... few last things before I head off to bed (I type fast, and talk a lot so a bit of warning).

I will look into malignancy theory - I have grasped from a few threads about that there is some conflict between the radation types versus the surgeon types.


The stats - I somehow imagine doctors can pull (not in bad spirits) all kinds of different stats - a bit of googling tonight certainly shows those 1 in 5 for hearing loss versus 1 in 20 for palsy (not sure if that is broad based 'some' facial weakness or very noticeable palsy ... sorry if my word choice is politically correct, will need to work on that!) seem a bit off the mark.

The statistics I was given was that I had a 70% chance of saving my hearing, 5% for facial nerve damage or spinal fluid leak, and that he thought that I should get it taken out then while it was small (mine also was totally in the canal or whatever you call it.)

After I wrote the above, I put a bit of my math brain to work - I think we are talking some of the same stats - 1 in 20 for facial nerve is 5%.  Maybe I got the hearing loss stat backwards - then it too would almost match.  Hmmm - will keep thinking.

MOST IMPORTANT though, I tried to run into CAlimama (aka Trish) at the hospital this morning - a few PMs quickly show we live but a few blocks apart, know all the local daycares, and spend time at the same park (and no I didn't see the patch-eyed woman last summer).  I even tried to find here at the hospital this morning - I went looking for her at the clinic just before 10am but she arrived just after 10am - small world.  I am certain having a few PM buddies (thanks to Yardtick too!) will help with all the many many questions we can come up.

Good night - hoping for a long peaceful sleep tonight!

Ann

[mk]

Oh, another question - my tumor is all within the canal (will get the official term and be back).  He suggested that his their biggest 'flag' of concern once it emerges from the canal.  Is that a common concern?

Hi Ann,

It is very good that your AN is so small, giving you lots of time to research your options.
Regarding the issue of the tumor being in the IAC - internal auditory canal, as opposed to spreading on the CP angle, the doctor is correct from the point of view that once it gets into the CP angle and grows more, it may start to compress the brain structures. There is a very descriptive cartoon on the anaworld website:  http://anworld.com/stages/

However, the appearance of symptoms may not follow this pattern: It is very common for patients having small ANs in the IAC to have severe symptoms of hearing loss, vertigo, etc, whereas this is not necessarily the case with larger ANs on the CP. What I am trying to say it that having a small AN that is confined in the IAC does not guarantee that you will remain symptom free and vice-versa.

Marianna

[Jim Scott]

Ann:

Thanks for the update and although we welcome you, I'm sorry that welcome is predicated on your AN diagnosis.  Thankfully, yours is small and you can certainly 'watch-and-wait' (observe) and see if the tumor is dormant or growing, then make a decision on how best to address it.  As we often assert; if you have to have a brain tumor, this is the preferred kind to have: benign and treatable. 

Our collective experience confirms your doctor's comment that your symptoms don't necessarily indicate size and/or growth.  This doctor seems to be familiar with acoustic neuromas, which is excellent news.  He is also correct when he says that if the AN grows out of the IAC and into the Cerebellopontine Angle, this is cause for alarm.  If it grows even larger and begins pushing on the cerebellum, this is cause for serious alarm.  My AN, when discovered via MRI scan, was 4.5 cm and pressing hard on my brainstem.  Definitely 'Stage 4'.  I had symptoms alright, but was quite functional and never lost feeling in my face or suffered any eye problems.  I quickly learned that I was extremely fortunate.  My neurosurgeon said that when they opened up my skull, the CSF literally 'gushed out' because it was under so much pressure from the very large AN.  Thank God, I never developed hydrocephalus.  On hindsight, this almost qualifies as a miracle.  I came through the surgery relatively 'intact' with no adverse effects.  My symptoms (intermittent acute 'stabbing' pain on one side of my head (the AN side), lethargy, loss of taste and appetite, equilibrium problems) all disappeared almost immediately and my recovery was fairly uneventful as well as rapid.  The follow-up radiation (FSR) was equally uneventful and successful.  If you have to undergo surgery down the road, I hope you have a similar experience. 

I'll defer to others more knowledgeable than I to explain balance tests and the vagaries of AN measurements.  The only balance test I ever had was my neurosurgeon asking me to walk across his examination room 'heel-to-toe'.  I couldn't do it before the surgery.  Now, I can.  He's satisfied with that and so am I.  We're easy to please, I guess.  Although I'm sure the various tests some AN patients receive are necessary and valuable to both doctor and patient, I managed to avoid most of them and did just fine.  I know I was blessed and thank God quite often.  I also try to be a voice of encouragement to the newly diagnosed, like you.  I hope I've succeeded. 

Jim

[Sue]

Hi Ann,

Sounds like you are getting your ducks in a row, and that's a good thing.  Absolutely, it's a good thing to watch and wait and see what happens.  Also you will note that each and every surgeon will look at things a bit differently.  Some like getting them out when they are little, some would rather wait awhile.  it's rather interesting to me that a surgeon will tell you of the possible risks of cancer if you have radiation, but did he get to the risks of anesthesia?  Somebody would eventually, but sometimes it's not until the day before your surgery.  There are risks no matter which road you take. 

Technically you have a "skull based tumor", since your AN does not reside on or in  your brain, and aren't we glad about that!   Most of us have referred to this as a brain tumor, but it isn't really.  But, it's pretty darn close.  Too close for me, thank you very much. 

Hang in there, and welcome to our little group.  Sorry you had to sign on full time, but we are happy to have you here, even though we are sorry that you have had to join our ranks. 

Sue in Vancouver USA

[calimama]

Hi Ann,

sorry i have been MIA... i had a mean bout of stomach flu starting late on sunday. Finally feeling human again.

Glad the AN is small, but sorry it is at all.

I have lots of thought on your posts, but limited time at this moment.

But quickly....
i did the "balance tests" too at Rutka's office. I like doing tests (well these ones are easy)! They were mostly sitting and laying down, with electrode-thingers on your head. They ask you to do all kinds of things, like shake your head, and then look at something. Get up and laydown fast. Following dots with your eyes. They put water (warm and cold) into your ear under moderate pressure (does not hurt, warm is nice on a cold day  ). Then they monitor your brain for any "dizziness". You might not feel dizzy, but the machine decides. Anyway, i think it all took like half hour. Was totally a breeze. This is just one other piece of info they like to have when assessing people. I can't recall if you have had any balance issues. I think mine showed some delay in being dizzy on the left (which i guess was a function of the AN). 

BTW - I have had no lasting balance problems from surgery. The first few days were rough, weeks tricky. By 2 months i went for my first run, eye patch and all. Now i have only some sense of being a little off in the dark, and if i am walking fast and turn my head back to look for the bus coming, i misstep a bit, but otherwise i am not aware of any balance problems. They offered me a therapist for home visits after i left the hospital but after 2 days at home i cancelled cuz i was getting around good (using the walls initially for support).

I would spend the next 6 months meeting with docs - surgeons (i talked to 2, one at GK centre and one at TWH). And radio-docs (i spoke with several including a few at GK centre and 2 at PMH, the latter for fractionated radiation over 5 weeks). I would not rule out any options til you have talked to as many people as you can. This is the best way to land on the option that you can best live with. I think making a decision is the hardest part, but you want to be comfortable with whatever you decided. Neither is "easy", both have risks, albeit different. You are lucky your AN is small and you are young and in good health (i assume).

I had my surgery with Dr. Guha (and Rutka) at TWH. Rutka recommended that i have someting done for my AN in say a 6 mo time frame (due to its size) and sent me to see Guha (surgery referral) and to the GK centre. He said i should make my decision after discussing all options/risks.  Guha has left the hospital (cancer diagnosis i think) but i am sure your ENT can refer you to a few people. This will be time well spend as you await your next MRI. "Wait and watch" is only good for so long and you are young so you probably want to deal with it before it grows a lot bigger and gives you more grief. But agree NO RUSH... but time to get all the info you need to make an informed decision.

Happy to catch up or talk on the phone sometime if you want to catch up in more detail.

Best,
Trish

[bell]

 Hi Ann,
  I am not a fan of waiting I would not wait more then 6 months.  You may consider GK and if yours is still small the middle Fosa approach and save hearing, facial, and eye issues.   Mine was 1.3cm diagonsed and to big for Middle Fosa, my hearing was still good, only lost 5% before surgery.  I am now SSD on right side.  So... The location of the tumor also matters, I was thinking maybe since mine was small I could save hearing, wrong...
Also you can get 2nd opinon, on what to do.  Keep reading this web, it is fantastic good luck,   Bell