Just Curious (Friends and Coworker Reactions)

[InnerGrace]

Quick rundown:  Was diagnosed April 28th... I spent a week mourning, crying, stressing and researching.  Now I've accepted my card.wrapped my head around it..(ha ha) and now just want to git er done!  The week after I was diagnosed (mind you, I DID put it out there on my facebook page, cause....the way I look at it, the more people praying, the better off I am..), I just happened to be on vacation and I thank God for that because if I wasn't already on vacation, I would have missed a lot of work... that whole week was a smudge in time now.  So here I am today.. I visited with my docs yesterday at UPMC in Pittsburgh... for the past week, I have become my normal self.. easy going, laughing.. and making jokes about it... ...(I have a bit of an edge though...lol  cause yes, I am still nervous as all hell!!)  I don't think my coworkers and friends know how to take it...I had a friend say to me at work Monday... sooooooo... you have a tumor.  And I said.. "yes!  It's mine and you can't have it!"  He asked what they were going to do with it and I said, "Well, they are going to take it out!"... and he said...with a leery look in his eye...."Thru your skull???"  And I said, "Well, yes..."...lol  And he was like.. "Omg.. I'd be freakin' out right now..."... I told him, "Trust me, I was... but... I'm trying not to think too much about the process rather than the outcome...".... But, I guess I'm starting to feel.. like..(especially with the surgery date set tentively for Memorial Day...).. I can only stay strong for so long.... and people's weirdness about all of it.. is making me feel... well, scared... like they don't think I'm going to make it thru it...   I guess I'm just searching for others who felt the same way and just want to share with me, your emotions before surgery, I suppose.  The docs told me yesterday that it is pressing on my brainstem and that is what has been causing my balance issues.....wasn't expecting that.. but other than that, the docs didn't really tell me anything I hadn't already googled for myself.  Of course, they are going to try and preserve my hearing, but obviously, as we all know, there is a small chance of that...however, I have accepted that might be the case.  But to actually hear them saying it, kinda brought up tears, to hear it from the docs!  But.... it's not like they are taking my soul... lol  Just needed to come and share with people that know what I'm going thru.. OH!  And crazy crazy crazy!  For those of you who have faith... (this stinkin' thing being so RARE!).. I have now "met" 4 people in my "backyard"... that have had the exact same thing/surgery/p.i.t.a.  Amazing.. I believe God put these folks in my path.. one of the fellas, I graduated school with.. another is a woman who is a friend of my sister's... their boys hang out.... (she actually had her done by the same surgeons).... and another lady goes to my parent's church and another is my ex husbands girlfriend's dad...LOL  That's encouraging actually.

[caryawilson]

First let me explain how "pressing on brain stem is causing balance issues". As we know, an AN starts growing from the vestibular nerve in the boney part of the skull. It should more accurately be call a vestibular schwanomma. At this point, we can start experiencing hearing loss and balance issue. However those of us with large tumors, we don't have symptoms or they are too subtle to notice. The tumor then slowly grows and one it enters the brain, it can grow mostly unhindered. It grows around and pushes nerves and pushes your brain out of the way. This happens until it hits the brain stem. You have cranial fluid surrounding the brain stem. This is a barrier to the tumor. Now, when it grows it will push against the brain stem and also pushes against where it started to grow, on the vestibular nerve in the skull. At this point you will start to see more issues such as hearing and balance loss. The main worry is the tumor gets so large that it compresses the cranial fluid around the brain stem preventing it's circulation.

However, I would not worry on this later case since I'm sure yoir medical team is tracking it.

To be honest, I was not concerned with my surgery. My personality is that I only worry about things I can change.  However my parents and girlfriend were devastated.  When someone hears tumor plus brain, they think of death. This is the common reaction. Nothing you will do will change this.  get used to the remarks.

However, as we know in this club, the chances of a fatal outcome are really small (less than 1%).. The surgery is not as bad, physically as you imagine. Its strange. The hardest physical challenge is getting the mind and body to start working again. The natural tendency is to stay in bed. The quicker you start to walk the quicker you will recover. I was walking within the first 24 hours (others have walked the same day). I was off pain killers within six days. So not to bad physically. Often times it's brutal emotionally.  It's a long road to get the mind working again. 

In summary. It was much easier than I had imagined .... physically.  However, the recovery was long. I tried to live in the day to day. You will improve every day... Slowly. Give yourself time.

[ppg01080]

My friends and coworkers didn't know what to do when I joked about my AN. I will be having my surgery on May 26th. My tumor is small but is causing severe symptoms because of the location.
I find that I have to assure others that I will be okay. I'm not sure what impact the hearing loss will have on my teaching career. I realized I was losing my hearing when I had difficulty understanding what my students were saying especially when I was writing on the board.
I will be praying for you. I do believe in the power of prayer. I thank God everyday for my family support.

[InnerGrace]

ppg,

I know this has brought me so much closer to God...I have no choice but to totally trust him in this situation... I can't exactly do it my way anymore.  LOL  I'm going to be getting my surgery date today, I believe.. still hoping for Memorial Day.  I just want this done and over with.  It seems as though ever since I've been diagnosed, I am feeling all of these new feelings that I've never felt before.  Different kind of headache, feelings in my arms, feelings in my head..  don't know if it's tumor related or I'm having small anxiety attacks.  I just want it gone.  I will be thinking of you and praying for you on the 26th and before for your peace of mind.  Where are you getting yours done at?  I will be keeping my eye out for you..

[ppg01080]

I will be having my surgery at Dartmouth Hitchcock in New Hampshire. After I was diagnosed I realized the symptoms I was experiencing were related to the tumor. I almost fell in the shower. My food sometimes taste like nothing or salt. Of course the hearing loss and tinnitus. I force myself to socialize because it is difficult to hear in some social situations. I'm learning to adapt.
I pray you have your surgery soon. Take care of yourself.

[Dr T]

Best wishes InnerGrace; please stay strong (and that doesn't sound like it's going to be a problem for you.) As my surgery took place long before Facebook, I did not get to ask my FB friends for prayers. I am glad you were able to find some solace in that. I did not really get to gauge the reactions of friends and coworkers because I first saw a neurosurgeon on a Thursday, and by Fri headed to a different state where I was admitted to the hospital that Monday. I did not return to my home state for several months and did not return to work until 6 months after surgery. Friends/coworkers reactions after I returned were all over the place; some things about my condition were obvious, e.g. facial paralysis, and other things I hid, e.g. one-sided deafness (I was 29 years old and embarrassed). Amazing that you encountered several people in your backyard that had experienced AN. I only encountered one but he turned out to be critical--he was a VP in the large corp I worked for and took me into his organization. Take care

[PaulW]

Acoustic Neuromas are really not that rare. The detected incidence is 1.4 per 100000 per year.
Given an 80 year life expectancy that's about 1 in 900 people.
I have met one other person that had an acoustic neuroma before I had one..
Once I was diagnosed, i have discovered another 6 people that have acoustic neuromas that I know.
Two of them turned up to an AN support group meeting. Both times the conversation went something like this. "Hi Paul, haven't seen you in ages must be 10 years..... What are you doing here?"   Well I have a brain tumour. "Oh crap me too, what a coincidence..... Oh I guess that's why we are both here at an AN meeting"

[researcher]

I found that when I told people that I had a brain tumor, they thought of "brain cancer". So I would say it was a benign tumor and not cancer and they would visibly relax.

Most people want to make sure that they don't have an AN (acoustic neuroma). So I told them my symptoms and/or the typical symptoms of an AN. Told them how the MRI found the tumor.

They also seemed to want a timeline of when you could be back at work, when you would be "better", etc.

The folks just want to know that you will be okay. You can give them the diagnosis of "acoustic neuroma" so they can look it up.

[arizonajack]

When I was diagnosed I emailed everybody an explanation of what an acoustic neuroma was. The subject line of the email was "I have one of these."

It was easier for them to take once they had an understanding of what it was.

[WhatnotGems]

InnerGrace,

People react very differently, some will ask you thousands of questions and others will avoid the topic. Some will remain your friend. The remaining friends will stand by you. I hope your surgery went well.

June 28th I had my annual follow up MRI for my Pitutary Ademona. June 29th I was informed I have
a Schwannoma tumor on the right auditory nerve.
I have had routine MRI since I was diagnosed with the Pitutary Ademona in October of 2005. Every 6 months for the first 5 years and then annually, was this Schwannoma tumor there and just not spotted or has is appeared recently? I have no idea.
I have my first appointment August 12, am I anxious? Yes. But as the care giver for my husband and presently recovering from a stress fracture in my foot I am looking at the time as a gift of preparation. My friends all know about the first tumor. I have not told them about the second. I will the week I see the doctor.
My first friendly tumor most days I am not aware of, the second has been showing symptoms while hiding from me. Hearing loss in the Right ear began in 2013, pressure in ear etc...
Medications for the Pitutary Ademona have been Cabergoline and Humatrope. at the end of May after talking with my new endocrinologist we discontinued the Humatrope a human growth hormone.

I sell vintage and antiques online, so having coworkers reacting is not an issue for me. Dealing with my husband is an issue he is taking this much harder than I am. I have suggested moving into a hotel with a restaurant for the duration, my husband cannot drive and uses a wheelchair. I wonder if I can get a package deal.

I just looked this up... I wonder...
Humatrope - Side effect If you have pre-existing tumors, or growth hormone deficiency caused by abnormalities in the brain, you should be watched closely for worsening or returning of this condition. If you had cancer as a child and received radiation treatment to your head, you may have a greater risk of developing a new tumor if you are treated with growth hormone. The most common type of tumor reported in people treated with growth hormone after radiation to the head was a tumor of the covering of the brain, called a meningioma. If you developed growth hormone deficiency because you had a tumor inside the head or received radiation to the head, you should be monitored closely by your doctor during treatment with growth hormone. Children who have some rare genetic conditions may have a greater risk of developing a tumor if treated with growth hormone. If you have moles on your skin you should have these checked carefully for any changes while being treated with growth hormone.