Not sure whats going on now!

[susier]

My AN was measured at 2-3MM from MRI done 6/14/07.  Afer seeing an ENT specializing in AN's last week, he suggested wait and watch and another MRI in December.  I have been feeling almost normal for the past week (maybe due to not so much stress after my appt) until today.  I just feel "yucky" today.  I don't know exactly how to describe it.  Kinda light headed, not really dizzy, a little sick to my stomach.  I have some tingling in my right cheek and it feel like the back of my throat and tonque are a little numb.  Since my AN is so small, should I be having these kind of symptoms? 

[tatianne]

Even the smallest ANs can cause symptoms, sometimes Ive noticed that those you have small ANs have even more severe symptoms then larger ones. I think it all depends on the location of the AN and the nerves its touching or compressing.
I remember when I was first diagnosed I had a period of ups and downs in regards to symptoms, after a while it all kind of settled down.
One thing I know for sure is any level of anxiety, concern or fatigue really brings out the symptoms much more.
Ive had days as you describe, dizzy, yucky, tired, even nausea. Ive also had periods of a litle numbness on my tongue. For whatever reason in my case the symptoms seem to come and go and not reaaly last too long, thank god. I guess what Im trying to say i that what your describing sound normal for your situation.
Remember these Ans grow very very slowly most of the time.. Get a good nights sleep, try to relax, maybe go for a massage that helps me a lot.
Take Care
T

[Jim Scott]

Hi, Susie:

Whats going on is relatively normal for anyone with an acoustic neuroma tumor, even a fairly small one, like your's.  We're all different and so are AN tumors, so we all experience somewhat different symptoms.  Unfortunately, as long as you have the AN you are going to be vulnerable to occasionally having symptoms of some kind, from minor and mild to more noticeable.  Of course, knowing you have the AN and subsequently becoming stressed about that could add to your feelings of being 'off'.  Experiencing occasional, unsettling symptoms is basically a part of the watch-and-wait' approach for some folks.  Unfortunately, you may be one of them.

Jim

[susier]

Thanks again for the great advice.  Sometimes I think that everytime I read about another symptiom, I start having it!  I was just so excited that I was feeling so much better, that when I started feeling bad again, I just knew something was wrong.  Patience is not one of my best traits, so waiting and watching is going to be really tough. 

[Samantha n Adrian]

Sometimes I think that everytime I read about another symptiom, I start having it!  I was just so excited that I was feeling so much better, that when I started feeling bad again, I just knew something was wrong.

Hi there Susie! Sam here.

I just wanted to tell you that I am a lot like you. I do not have the AN, my boyfriend does, however I tried putting myself in his shoes and I stared at his MRI's and imagined that they were mine and that large mass was in my head and how I would fell about it and I immediately started to get a headache and feel sick and I realized if I was in his place there is no way I would be able to feel "ok" until I knew it was out. I know it is a mind over matter thing but just knowing it is there would be enough for every little ache and pain to make me second guess "Is it growing?? Is it pushing on my facial nerve?? Is it pushing on my brain stem???"

It really is a hard thing to "Watch and Wait" for people like us. I really am so glad Adrian is having his removed. Not that his situation is better.... his AN is scary large.... just saying I think watching & waiting would drive me crazy. I am a "Get the problem fixed now" kind of person. Not that there is anything wrong or bad about the watching and waiting. And due to your size AN it really seems your best option..... I just don't think some people can handle it well and I know I would probably be one of those people.

Keep your head up and stay positive. That mind over matter thing can truly work wonders if you learn to master it.

Good luck to you and please keep us posted as to how you are doing!

Sam~

[Windsong]

Hi Sam and Susie,

Susie, your An is very tiny if the 2-3 is in millimeters not cm. How was that found I wonder? Regardless,  once one finds it or has one it is something. I do want to say that if I had one that size ( well, I did, I simply didn't know it and i figure it was over 1 cm before I felt certain symptoms that intruded on my daily life and it was found arund the 2 cm mark but isn't it great that mri's can find things sooner than later?) Unless you are having really big symptoms, I'd think that waiting and watching could be a good thing as sometimes Ans never grow after being found and in any case they grow very slowly most of the time. It's rarer that they grow fast.  And Ans are rare so they say.

Do take  time to think this through. If it is indeed a 2-3 mm one then i would think you are not in any hurry.

Hi Sam,

I saw your post now and do want to say that I have been following Adrian's and your posts about his An. It is good to see that you are looking after Adrian's wellbeing ( Hi Adrian! )  If I have any advice about your post right now it would be to keep a  cool outlook on his mri that you have been viewing. I can relate to your post as I can remember the  way I felt about my dad's cancer op and then a year later his lung op. Pretty scared even as I did what I could to support him and you know what? He's stille here and doing great ten years later.

Laughter helps in that watching funny vidieos, making jokes and all that helps.(definitely helps the immune system).... Being supportive in any way  whatsoever does help and we know that you are doing much of that. It's wonderful.  I'd say that rather than looking at Adrian's An, your best thing is doing the rest of  what you are doing.   The other good things are that he is active from what I have read and though his An is large at the size posted no one seems to be saying he needs an op this day etc..... that is to his good I am thinking? Plus he and you are looking at  choices for surgery.


It's a hard thing being on the sidelines  I know. But do also know that simply by being here you are doing an awful  lot of good not only for Adrian but also for all who come here and read about An.

Just think how in a month you both have learned so much and travelled such a road. When you make your choice you will find that things settle down. It's the wait before treatment decision  for you that is hard I think.

take care, and put the mri away.....

all the best,
windsong

[Betsy]

Hi Susie,

With AN's just about anything goes.  I've read posts from folks who have very small ANs like yours and have some pretty significant symptoms, and others who have much larger ANs and didn't know about it until it was several centimeters in size.  When I was first diagnosed, it was hard to tell which symptoms were due to anxiety and which were caused by the AN.  The more I learned, the less anxious I felt and some of the symptoms went away.  I figure the ones that didn't go away were AN related.

Be good to yourself, and follow Tatianne's advice.  A good night's sleep can work wonders.

Betsy

[susier]

Thanks everyone..I did take T's advice and went to bed early last night with the help of a "sleepy pill" and do feel better today.  I think I have just been focusing on  this thing too muchl.  I have another appt next week at MD Anderson in Houston and hopefully will be able to get rid of some of the anxiety after that.  I feel like such a baby, as I have read of so many people with so much worse problems and symptoms, but it does help to express them here.  I talk to my friends and family, but they just can't really understand what I'm going through as you all do.  This site is terrific! 
Sam,  Good luck to you and Adrian.

[sgerrard]

I feel like such a baby, as I have read of so many people with so much worse problems and symptoms, but it does help to express them here. 

I know what you mean, when you read about the bowling balls, your little pea seems like nothing. Then you get a weird symptom, and you realize that the little ones can cause plenty of havoc too, if they are so inclined. I guess it just depends on exactly where the tumor is whether it will cause symptoms when it is small.

I hope your next appt. goes well, and that you can put your AN on the shelf until December.

Steve

[mema]

Susie,                                                                                                                                                                                     


Don't feel like a baby.  My favorite phrase is "It doesn't matter if your standing in sh?? up to your neck or up to your feet.  It still STINKS!  I think you will be in very good hands with MD Anderson.  I went to MD Anderson in Florida.  Hang in there                               


                                                            mema

[susier]

Thanks mema,
  Were you treated at MD Anderson or just a consult?  My niece was treated there for Hodgkins Disease a couple of years ago,and they were terrific to her..Cancer free for 2 years now.  This is why my family and I wanted to talk to them.  If you were treated there, could you tell me what type of treatment you decided on and how it went?  Thanks again