ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: mac84 on October 15, 2014, 11:23:14 am

Title: Newly diagnosed this week
Post by: mac84 on October 15, 2014, 11:23:14 am
Hi everyone.....have read tons since Monday afternoon at 5PM when I found out about my 1cm AN on the left side. 48 y/o and in Alabama. Anyone have anything done at UAB in Birmingham? I've not seen anything posted here.  Hearing was a little off but no tinnitus...went for a check up at the ENT and before I could get my ABR test done the hearing went about 80%.  I was put on Prednisone 60mg for a few days and the hearing returned but tinnitus has started pretty loudly.  I'm now off the prednisone (thank goodness) and waiting to see what happens w/ the hearing while I explore my options. I'm hearing pretty well in that ear now, just not up to par....and I can put up w/ the Tinnitus.


At this point I'm gathering facts and trying to get my first consult scheduled. (Vanderbilt Skull Base Center in TN).  I'm early into this so just trying to balance quality of life vs. risks....like everyone else...HA!

Thanks you to all...
Title: Re: Newly diagnosed this week
Post by: ANGuy on October 15, 2014, 03:23:48 pm
I'm 47 and was diagnosed a couple of months ago with a 1cm AN.  I'm in NC, even though I'm a "Damn Yankee", I figure I am supposed to salute you with a customary greeting like "Hey yall!"  In hindsight, I've had my AN for about 8.5 years since that is when I had an attack of vertigo that lasted a couple of hours.

I am going to give you a bit of advice based on my experiences, even though I am in no way qualified to do so.  Really, it's more of what to look out for as you take all this in and pass the time deciding on what, if any, treatment you choose.  First, things will look better with time.  This will go up and down.  At times, it will seem very grim.  Reading things online can be very upsetting.  In time, this will bother you less.  I have not had any treatment yet so I am the same as I was when I was diagnosed, yet I am much less concerned, frightened, by all of this.  It's like any other kind of loss.  Break up with your girlfriend when you are 17 and you think the world is coming to an end, yet a few weeks later you could care less.  It might not be that easy getting used to all of this, but you will "get over" the shock and fear that you are likely feeling.

Next, symptoms.  In my case, the symptoms vary.  My hearing is for the most part "not bad".  It ain't great, but it works for me.  However, there are times where it is pretty bad and once it was like my AN ear was turned "off".  It can vary throughout the day.  My tinnitus is the same as is the feeling of fullness in the ear.  All three symptoms come and go independently of each other.  None of my Drs. have been able to give me an explanation of why this is other than "you have an AN, of course things aren't going to work right".

Dizziness, you will likely find yourself at times being dizzy.  This can be to the point of it seeming like the world is spinning around you.  You may be forced to crawl on the floor because you can't stand up.  Likely, you will become nauseous and vomit.  There are things that can mitigate these symptoms.  For nausea, Zophran works instantly for me.  It's like  nausea/vomiting "off switch".  It's chewable and it worked for me before I finished chewing it up.  As for the spins, dizziness, balance issues, there are vestibular suppressants that work for me when I have a dizzy attack.  They take an hour or two to start working, and they basically make me "stoned", but they work.  Anti-vert (mecklazine) is a good one.  It is sold over the counter as Dramamine Less Drowsy and it is an antihistamine.  You can also get a Rx for it.  Valium and Lorazepam also work well.  I carry all three with me wherever I go on one of those aluminum pill caddies you keep on your key chain.  If I get an attack, I chew up the Zophran which allows me to not vomit.  Then I take a mecklazine and a Valium and wait for them to work.  Promethazine is another antihistamine that works, but it is usually a suppository and must be kept refrigerated which is not practical for many situations.
Title: Re: Newly diagnosed this week
Post by: alabamajane on October 15, 2014, 05:30:12 pm
Hi and welcome to the site,,
As you can see , I too am from AL,, not many of us on here seems,,,,I did have my surgery in 2011 at UAB. Send me a PM if you'd like to discuss it.

Having an AN is very upsetting at first but with some research you will find that generally you have tme to decide on your direction forward. At 1cm you should have all three options, watch and wait , radiosurgery  and surgery. After your first consult you will know much more. Size alone is not all to take into consideration as location of tumor is just as important. The degree to which your symptoms are impacting your quality of life is also very important. An experienced team of doctors is very important. You can get free phone consults from several doctors also which I found very helpful. House clinic in Los Angeles( hei.org)  is the one I sent my info to. You send them a CD of your MRI and report and one of the Dr will call you with an evaluation. I found it helpful even though I did not use them.
We have a support group in Mobile that you are welcome to attend if you are at all close. We are the only group in the state from what I understand. Next meeting is Nov. 1 ,, let me know and I'll send info.
Let us know how it goes for you and keep asking questions,, that's why we are all here ,, to help!

Jane
Title: Re: Newly diagnosed this week
Post by: mac84 on October 16, 2014, 08:16:09 am
Wow, thanks to all of you...I really appreciate the reply.

I suppose 'more comfortable' is where I am right now thanks to all I've read on this site and elsewhere. Once you're in it you're 'in it'.....nothing to do but go through it.

Funny, but for the last several months I've been looking for ways to slow things down in my life. We own a business, I have duties at church, we have the same things going on w/ kids everyone else does and with everything moving so fast you just finally reach the point that you say "Things need to change".  Well, I guess this is a good wake up call.  I'm one of those Type A + people who have to 'manage everything' and could use lots more patience. I think this will be helpful to learn that there are things I cannot control AND there are sure things that are 'inconsequential' when compared to problems that others have.  I'm thankful things are as they are and I hope to have the strength to learn some lessons here.

Thanks again for all your help and I'll update w/ what I find out.  Apparently my ENT thought faxing my reports to Vandy is the only thing they needed to do....I've had to ask them to actually "CALL" the center there and refer me.  Oh well, I'll try not to 'manage it" so thoroughly!   :)
Title: Re: Newly diagnosed this week
Post by: kmr1969 on October 16, 2014, 06:59:03 pm
With the smallish size of your tumor, you should be a good candidate for traditional surgery or radiosurgery (eg gamma knife). It is good to have options, but also tough to make a decision about which way to go.  You will see a lot so posts here about people who went with their gut when deciding between the different treatment options and felt a sense or peace and relief after they had made that decision.

Hopefully, you have already been told that you don't need to feel rushed to make a decision.  In fact a viable option for you may be to watch and wait for some time to see if that little bugger is going to behave him/herself.

My advice would be to talk to at least 1 doctor who specializes in traditional surgery and at least 1 doctor who specializes in radiosurgery.

You may not have the answer after just those 2 meetings but I'll bet your gut will start talking to you and leading you down the right path for you.

Good luck.