New and not happy

[ppearl214]

thanks Patti for the clarification.  Appreciated.

Phyl

phyll,


This was not intended towards you

pattibobatti

[Windsong]

Hi,

I'm so sorry you have this problem.

I wanted to say how awful it can be having a tumour and no one "listening" to you for so many years, such that while you search for answers you see your whole life turn upside down, like more symptoms and wave goodbye to your career etc.


I did check back to see your first post as I wondered if you were new or had posted before.

I hope you get better answers and help than you posted so far.... how big is your An now? do you have a good doctor now? i hope you have a good doc following your case now....

Do write in more. There are plenty of people here who have gone through all sorts of things in their own journeys with their Ans.

let them help.

best wishes,
Windsong

Hi. Nice to meet you all.

I was just diagnosed, after being told I didn't have an AN for almost six years. My first MRI with contrast was five years ago and they didn't find it....so I spent the last five years thinking, "Well, at least I don't have that."

Only, I do. I got fed up with the platitudes of my previoius ENTs and found myself an otoneurologist who ordered a new MRI. This doctor was much more thorough, and found it where it has been all along. So now I am in shock and panic.

My tumor is INSIDE the cochlea (nothing normal about me) and I don't have much information other than that so far. A rare incidence of a rare tumor.

I am mourning my hearing and dreading the coming ordeals. I don't feel well much of the time and have the usual physical and cognitive difficulties that vestibular disorders present. I have already had lifestyle changes due to my balance, hearing and tiredness issues. I don't expect things to get better....am I right?

[pattibobatti]

Well, it's the next morning and after reading these few posts again, I think I am the one with the attitude.  Don't have one now, though!! 

I do apologize for my last post.  I now think I was wrong. 

Pattibobatti

[pattibobatti]

Hi thornapple,

I see that you are on the website now.  Would you let me apologize to you in a personal message?

Thanks
Pattibobatti

[thornapple]

No, it was intended towards me. What kind of support forum is this?

I have to say I don't find this remotely welcoming;

1. people who do not actually read my posts before responding so they don't see that I am already doing what they just told me to do, or already answered the question they just asked.

2. people who lecture me without reading my posts.

3. people making snide remarks about the comments of other forum members.

4. accusations of attitude.

If this is a support forum, how supportive do you think this kind of behavior can possibly be to someone newly diagnosed after years of illness? Someone who is experiencing the same shock and anxiety that you faced when you found out? You have all been through this yourselves. What's the matter with you people?

I have a life that has been going downhill for years due to an undiagnosed tumor. I have a very successful and satisfying career that is going to be put on hold, maybe derailed completely, while I figure out how to deal medically and financially with this crisis in my life. I am faced with figuring out how to travel all over the country (with no money) to get the medical care I will need. If I lose or have to leave my job, I have no health insurance. In the last four weeks I lost my hearing to the point that I can't understand people half the time.  My family is worried sick and has been for years; now that they know I have a tumor, they are terrified. I can't know at this point what the outcome will be; disability? A return to my old life? Facial droop? Brain damage? It's certainly going to be one-sided deafness, because the medical profession screwed up until it was too late to save it. I have balance issues, work issues, tiredness issues, hearing issues, money issues, and may be facing brain surgery that will cause more problems.

Didn't this happen to you people, too?

I can't take this bickering, lecturing, and infighting right now. I am too emotionally fragile. I hope you guys figure out how to fix the behavior on this forum. If I experience any more of this I will need additional counseling for emotional distress. I will read here, but I will not post here again.

[pattibobatti]

Dear Thornapple,

This forum did nothing wrong.  I did.  The forum is a wonderful place to come to and you only have to read a small amount on here to see that people really do care about you.  This forum has helped me very much as well as many other people. It will continue to be a great forum.

I posted a comment that was way out of line. I was wrong.  I know it now and I am sorry.  You should be angry with me but please don't include the rest of these wonderful people in your anger.  I would like to make it up to you, also.  Please let me know if there is anything that I could do to help resolve this.   

Pattibobatti

[Cheryl R]

You are mentioning rapid loss of your hearing.    Have you mentioned this to your doctor with the possibilty of getting on a dose of steroids as this is used frequently with sudden hearing loss and may bring some back.             I have never had to do this but many have with good results so might be something to check into.                            Cheryl R.

[ppearl214]

sorry to hear this discouragement with us here, thorn.  We truly are very supportive and as one that went through treatment recently, I have to say the gang here was more supportive than any others I know.

Were you able to determine the exact size of the AN?  If you are leaning towards microsurgery, not knowing where you are based, what acute care facilities are you looking into? Many here can make recommendations on dr's at certain facilities of interest to you.

Phyl

[Sue]

Thornapple:

I certainly sympathize with your plight.  Your symptoms went on far too long without proper diagnosis, and I'm so sorry that happened to you.  I thought I was annoyed because it took a year before I finally got an MRI to determine what was causing my hearing loss, tinnitus, ear fullness.  Finally got the facial numbness and that's when I got the MRI.  I was being treated for allergies!  I am so sorry you got a bad impression of this forum.  This really is a great place for support and information.  I truly hope that everything eventually works out for you and that your outcome will not be as dire as you imagine. We have often wondered, on this forum, why we use the term "benign".  It may not be cancerous, but AN's can be anything but benign - they can be devastating. I wish you the best of luck in your treatment and recovery.

Sue in Vancouver

[Windsong]

I know first hand what it is to go through years misdiagnosed with my An. During those years I continued to lose hearing, continued to have balance problems, found it harder and harder struggling in my own career, lost that battle, fought for an income on which to live, dealt with having to find and pay for insurance, sold a home, dealt with brush offs from some docs over time, saw my life  as i knew it shrink and shrink and shrink. It was not easy. That is why i "heard" what you were saying.

One unfortunate thing even post An treatment is that I forget short term memory things. Sometimes that means that in the middle of a post i forget what I wanted to say.

I can't even really give advice on the best way to deal with career and financial situations that come along with a health issue. All i know is that some how during my years of coping, things ended up being relatively ok but I will not totally ever get over the loss of career. People don't talk much about those side issues which is ok as certainly once we know we have an An, all of our energies are directed to finding more info about it, meeting various treatment doctors, making decisions on what to do etc.... none of it is easy.

It does sound like you are gathering all the pertinent information for your own particular An.

Good luck in your decision making and God bless,
best wishes,
Windsong

[Kathleen_Mc]

Thornapple:  The only thing I have to say.....when it comes to this forum.....take what you want and leave the rest.
You can find a lot of "food for thought" here, real understnading from where you're coming and knowledge but like everything in life that involves "other people" there will be things you don't like, try not to take offence and remember that people here are here  either for help themselves or to help others and we are not "professionals" just folks who've "been there, done that" or "going there to do that".
Kathleen

[Nickie]

Hello, I am new here but am not a newbie to An removal, I had my turmor removed 12 years ago and it was very tramatic , I am very sorry for how you are feeling , it is  very scary to go thru things that have so many side effect, so many things that we don't know if they will happen or not! you have to trust in your doctor's to the best that they can do and when it is all done and you are awake then you deal with the things that are before you, if you worry about all the things that may happen but may not happen you are using up your energy on the wrong things! I know it is all scary and it is all unknown to any of us and everyone who goes thru this. I walked away from a 2month old and a 5 year old with the unknown ahead of me, after a 17 hour surgery  I had some challenges ahead of me, I learned to walk again, use my hands, eat, I have no hearing in my left ear, I still have a balance problem, dry eye, but I would rather have these few things and be going forward with my family and friends. We all have challenges and issues May God bless you and give you the stength and courage.
Nickie

[pattibobatti]

Good evening Thornapple!

All of these posts are really concerned about you.  Would you consider posting so that we could try this again!!

It's up to you!  Hope you are having a nice evening

Pattibobatti