General Category > AN Issues

Just Curious (Friends and Coworker Reactions)

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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.

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