What are your criteria for moving from watch and wait to a procedure?

[millie]

Mary-I read your posts and it seems you are going to an excellent resource-Dr. Barker from Mass General. 
I too have headaches and get tired, probably from my brain compensating/not compensating for the balance nerve.  I almost always have the earringing.  I am starting to have to guard against depression and inactivity.  I am sick of the "wonkiness."
I too was told that surgery or treatment may/may not lessen the symptoms.  However if the thing is growing, the idea is to stop its further growth.  Mine went from 1.1 to 1.4 cm in length in five months.  I am going to do either surgery or radiation, but which?  I'd really like to be more symptom free but there seem to be no guarantees.
Yet many folks have had various treatments and are living quality lives. 
I'm done with watch and wait.  But my son gets married September 7th so I want to be as present as I can be for that, and then I will act.  Although, if I knew I'd have few side effects, I'd do this next week!
Millie

[MDemisay]

Mary,

If the outcome you don't like is from one particular doctor, find another, and if you don't like that one find another. The choice is up to you. Brain surgery is not new. Find the doctor and the center you are most comfortable. There are others on this site who will be able to chime in. You must not give up hope, your effort will be rewarded with a good outcome!

Mike

[Teresa Bicknell]

I am so glad I read this post. I was diagnosed in December 2011 with  a 5 mm x 10 mm AN on the left side. My neurosurgeon and neurologist have made me feel that my symptoms are imagined since the tumor is so small. My symptoms include intermittent bouts of dizziness with slight nausea, balance issues, hearing loss, and tinnitus. I am scheduled to have a repeat MRI in September. Is it uncommon for someone with a small AN to have my symptoms?

[Jim Scott]

Hi, Teresa ~

The answer to your question is 'no'.  Often, although it may seem counter-intuitive, small ANs give the patient the most trouble.  Although size matters, AN location and configuration are equally important as that can generate the kind of symptoms you're experiencing.  The upcoming MRI should tell your doctor a lot.  If he doesn't respond to your symptoms and again dismisses them, I suggest you seek out another doctor.   Oh, and welcome to the ANA discussion forums. 

Jim

[Kathleen_Mc]

I remained in watch and wait with my regrowth until my two children were grown such that my husband (at the time) would be able to cope with the two of them and me ill. I wanted to have the re-growth removed while it was still small (hence shorter surgery, easier recovery), I wanted it done before the tumor grew big enough to do any damage, and I wanted the surgery doen before my children were old enough to fully realise what was happening and be scared (young enough to acept it was a bump in my ear and not a brain tumor).I chose to have the tumor regrowth removed, it was not yet medically required.
Kathleen

[G_Man]

Teresa
    No worries.  I have all the same symptoms.  You are not crazy.  You may get the sense that your doctor is ignoring your symptoms.  He may or may not be doing so.  If he's any good he won't act until it's really necessary to act.  I don't think he can do a whole lot until that point.  I suggest carrying a box of Bonine {motion sickness medication}.  It's an over the counter drug.  When you are getting the dizzies it can help but it can also make your drowsy.  I had a bout of motion sickness earlier this year for about 3 days and Bonine helped me through it.  I carry it in my bag everywhere I go. 
    What bothers me most about the symptoms is the unpredictability.  Some of the symptoms can come and go like a speeding train or pull into your station and hang around a while.
Glen

[PamJ]

I was watch and wait for three years but had terrible pain so had it removed with no regrets.

[leapyrtwins]

Generally a good time to move from watch & wait to a procedure is 1) your MRI shows growth or 2) your symptoms start to increase or get worse.

Jan

[millie]

I think so too.  I know last year, I could hear with my left ear and had no fullness in my head.  I was also not diagnosed until February (late)2012.  By then, my hearing had worsened and I was getting "feelings" in my head I never had before.  Like something in there.  Perhaps a cross between a clogged ear and a spirit sitting on the left side of my head.  Then, the ear ringing started.
  I take hope in Jim's saying the little ones cause the most trouble sometimes.  Does that mean removing little ones gets rid of most symptoms?  I know hearing loss with surgery is permanent.  However I feel  even relief of half the symptoms would be a blessing.
Lately I think I get pains in my left head.  Maybe it is tension and/or stress.
I look fine but feel tired.
Your symptoms definitely have a source, in my humble opinion!

[skipg]

 I Like what Gman said "What bothers me most about the symptoms is the unpredictability.  Some of the symptoms can come and go like a speeding train or pull into your station and hang around a while". Personally I like the speeding train part. I am still awaiting decisions on the course of treatment. Mine showed a growth spurt on my last MRI in July. Except for the ringing and squealing, most symptoms follow the train scenario. Growth and increased symptoms will sometimes indicate a need for trearment.
Skip

[millie]

That's why I made a decision about treatment.  I have to say, I am glad I made a decision. Now I want to get on with my life.  No spirits sitting on my head would be a plus.

[Mickey]

Being a W+W for 5+ years now my criteria has to do with Growth, Symptoms, and my Age. NO GROWTH is most important! Symptoms are variable in everyone. I know I have tinnitus (which I`m used to) and eventually would expect my hearing to diminish as I get older. As for age, stats say the older you are the more chance your AN has reached its top growth. I`d say if your 55 or better try to deal with everything if possible and monitor growth W+W. Remember also W+W dosn`t mean do nothing... Just the opposite with a heathy lifestyle (Tips from the W+W Brigade) Best wishes, Mickey

[G_Man]

Skip
    Thanks for the complement.
   General comments to everyone reading this:
    I think the important things in W+W have to do with:
    1. Watching to see if the dark passenger grows over time.
    2. Keeping an eye on the symptoms so that you realize when they are worsening BUT not allowing yourself to be overcome by having symptoms because they are a part of it.
    3. Accepting that there is a fair chance that things may get worse.
    4. Learning and growing into it so that by the time you must ACT you can stand in your truth and deal with it in the best manner possible.  This is a head game in more ways than one.
     I, for one, don't like it when I 'm laying on my right side and it sounds like there is a big potato growing out of my left ear.  However, I know that I have to learn to accept this. I'm not saying it's easy.  Since I don't have the luxury of choice, my only path is to find my peace with it.
     Here's where I am lucky.  I have my fellow ANA members who I am constantly learning from.  With every obstacle they tackle I'm given more strength.  That's what the organization is all about.  We all share our experiences.  Contrary to what many outsiders believe, most of these people are very positive given their situation.  We all understand the value of that.  We all know it goes a long way.  It means a great deal to me.
G_MAN

[millie]

Good words, G-man.  I think  the symptoms  added to "regular" life  challenges  can  find us (me?)
pretty down and now I find myself forgetting a lot too.  I think it is stress. It is good to read the wise words posted here.
Thank goodness for the forum .
Millie

[skipg]

Words of wisdom from the voice of experience. Thanks Gman

For now I am stuck with the "Train Station Scenario," where the tinnitus has taken up residence. Hopefully treatments will lessen this. The good thing is...that no matter how bad it is there others with much worse conditions. Proton beam here we (the AN and I) come!
Skip