Sometimes I feel like a faker...

[phantagrae]

I know I have this thing in my head (Stoopy Tumor) and I know I have to have something done about it, but it's such a strange thing.

I don't even know exactly what to say--I'm not "sick", I don't have a "disease".  Is it a "condition"?  It's so strange.

My family members and friends ask me how I feel, and I keep assuring them I feel fine.  My only real symptom is facial numbness and most of the time I'm barely aware of it.  The numbness and "scalded tongue" feeling in my mouth feels weird and can be annoying, since it's a sort of constant "feedback" situation, and sometimes my eye feels odd, but for the most part, it's easy to forget that there's anything going on.  And I'm pretty well used to it by now.

I don't want to sit around and feel sorry for myself, and I don't really need others to feel sorry for me.  My parents and other family members are worried and concerned, and are trying to help me work out the finances, etc., but it's so weird.

Even compared to a lot of folks around here who have suffered so much and have been through so much, I feel like I'm so different.  Now, believe me, I'm grateful that I haven't had more of an ordeal, especially since I need my hearing and my facial nerve intact to continue my career as an orchestral musician.

But is it weird that I don't feel worried or panicked or even all that scared?  I am worried, of course, that even if I have radiation that I won't know for quite a while whether or not it really worked and that I could experience some side effects or something.  I've told our orcehstra personnel manager that I intend to be ready to play when our seasons starts in September, and I really hope that's true.  I say that because I feel so normal, despite the Stoopy Tumor.

I don't even know why I'm saying all of this.  I just felt like I needed to get it out of my head (sort of like that thing in there...)

Thanks... 

[jsanders1379]

I think any/all kinds of feelings are par for the course....mine change from day to day (even minute to minute sometimes)....just be grateful that you are in a relatively good place right now....♥

[RichB57]

You absolutely should not feel like a faker!  Your tumor is toward the large size and depending on how your radiation treatment works out, this could have a drastic effect on your life.  I felt perfectly fine before my surgery.  I'm a Mechanical Engineer, so my hearing is not crucial to my career, but I did have my AN removed via the retrosigmoid approach because my hearing was still relatively good.  Unfortunately, my hearing was not saved, and I had severe headaches for several months until I found a pain management doctor who was able to give me the right combinations of medications to make them manageable.  I was active in martial arts before my surgery, and I've only been able to start training again in the last two months and still have trouble with headaches, not to mention the loss of balance after having the vestibular nerve removed on one side.  My advice is to keep researching so your as well informed as possible.  Every doctor you talk to will tell you their opinion is the best option, but your the one who has to live with the results.

[mk]

You sound exactly like me when I was first diagnosed. I had no symptoms other than the numbness you describe. I even had perfect hearing. My tumor was quite a bit larger than yours, touching the brainstem. It was hard to believe it was so large; I felt great. I didn't feel panicked and continued to plan things as if though nothing was happening.
I even felt great after GK. I didn't have any of the side effects that people describe.

The problem with this tumors however is that they can wreck havoc, even if they don't cause symptoms initially. Eventually I did loose my hearing post-GK. And the tumor continued to grow to the point that it almost caused hydrocephalus (a very serious condition), so I ended up having surgery. I was once again fortunate to escape the ordeal that many others have faced. My recovery was relatively fast, and I don't have any serious lingering side effects.

My point in all this is that even though you feel fine, having an AN is indeed a serious condition, that must be taken care of. You cannot leave an AN of this size untreated, but also you need to make sure that you choose experts to deal with it. Of course you don't need to feel sorry for yourself, and there is no need to panic. But you owe it to yourself to do your research and choose the best treatment that you feel is appropriate for you. It is great that you have family that is eager to help, you can direct them toward supporting you in your research, perhaps coming with you in your doctor's appointments, and helping out after treatment.

Marianna

[james e]

You should not tell your family and friends that you feel fine, when you are really suffering...facial numbness, scalded tongue, mouth feels weird, eye feels odd...your words!

This is a tumor. It is having a profound impact on you...nothing fake about it. You don't have a cast or crutches or something someone can see. It is invisible. I had a stroke 4 years ago, and my AN  was found 6 months later...all invisible. No one could look at me and tell I was suffering. Even today, my wife still forgets that I have my limits...short term memory loss, wonky 24/7, SSD.

Your family needs to know what is happening to you. Don't worry them about it, but let them  know it is a neurological problem, and it has an impact on you 24/7.

It is okay for you to be worried. Most people that have an AN have some type of disability following treatment...most are very minor. Following treatment there is a long recovery period, and I will give you my experience. I have not ridden my bike in over 3 years, but on Sunday, I went for a 18 mile bike ride. No way I could have done that a year ago. I am still a recovery stage, and getting better every day. Once you get treated, you will start improving...too slow at first, maybe even go backwards, but you will recover, and you will stop suffering.

James

[phantagrae]

It's funny, though, James--I do feel fine, generally.  My bad knees bother me more than the facial numbness.  I'm more used to the numbness than I am to my creaky knees.

I'm not downplaying my symptoms, really, and I have been very open and clear with my family.  It's just that when they ask me how I'm feeing, I really don't feel bad.  I haven't had any change that I'm aware of in my numbness symptoms since April, really, so I feel like I'm in a pretty good place right now.  That's all I mean when I say that I feel fine--I really do.

I'm just saying that it's hard to remember, sometimes, that there's anything wrong with my head.  You're right--it is invisible.  And the radiation treatment I intend to have will also be invisible.  I almost wish it would turn my hair completely gray or something just so I would have proof that something happened.  Maybe I can talk the doctor into putting a Band-Aid on my ear...

I don't mean to downplay anything or make fun of myself, but it's just that I've never experienced a situation like this.

[Tod]

Most every day I worry that someone will eventually figure out that I am a fraud and have been talking my way through a  profession for over 20 years. When I talk, or answer a question, I don't know where the words come from - it is like some kind of magic.

In many ways, my friend Bob (the tumor), is of the same kind of relationship. Other than hearing loss and wearing a Baha, the swallowing problems, the speech difficulty at times, the tinnitus, and the facial spasms, I feel great. I am great. Life is awesome. I simply don't define my life by Bob, even though he really is central to my life.

The fact is that it is okay to feel good. It really is. It is also okay not to be consumed by your tumor (in more ways than one). I finally told me on caringbridge, "If you don't hear from me, assume I am awesome. Because I am."

Be honest with how you feel. Don't downplay your tumor as it is serious. And feel free to play it as a sympathy card on occasion. I do, but I have no shame. 

A side note on the tinnitus. I was out on the lake kayak fishing with son and there was an awful roaring in my head. I was starting to think the tinnitus had kicked into overdrive. I put my hand over my good hear, blocked out the sound, and said, "Ah, cicadas." What a relief!

Tod

[Echo]

I find on the rare days where I feel totally great and suddenly realize I haven't had a wonky head or wobble that I find it hard to believe I have such a serious condition and can feel so good.  On the other days, especially at work, when I have a wonky head, wobble or I'm more tired than I could ever imagine, I find it frustrating that while I look and appear to function totally normal, I am anything but normal and no one around me is aware of the struggle I am having.

I have a wonderfully supportive family who see the changes in me and understand.  They know just by looking at me when I'm having a rough time and pretending otherwise just doesn't work!

I don't think you are alone at all in your thought process regarding your tumor.

Cathie.

[Jim Scott]

Phanta ~



I submit that everyone carries around some form of suffering at some time, be it physical or emotional.  Most keep it to themselves but it is there all the same. I try to remember that when others ask 'how are you?' and I'm not really all that great at the moment.  I always answer "fine" (with a smile) because I know that to list my complaints would be a burden to them and might motivate them to tell me their problems, thus boring both of us. 

Your feelings are perfectly natural and this is a good place to express them.  None of us wants other peoples pity but we understand what you're dealing with because most of us have 'been there' and can empathize.  That you sometimes feel a bit fraudulent is not surprising because with 'invisible' medical issues, that perception is more common than you think. 

Jane Austen wrote (in 'Pride and Prejudice') “Nobody can tell what I suffer! But it is always so. Those who do not complain are never pitied.” I think Jane was on to something.

Jim

[phantagrae]

Thank you all for your support and comments.  I was able to talk about these feelings a little at choir rehearsal last night during our prayer time and it helped to get it out there to a "general" audience.

Jim--thank you so much for that Austen quote.

[james e]

I think we all appreciate Jim a lot. He is a wise man.

James

[ombrerose4]

In your post you mentioned that you don't have a disease and I agree. But according to the Global Genes Project (http://globalgenes.org/rarelist/), acoustic neuromas are considered a rare disease