Grateful for the info...scared about the future.

[martha]

First time posting here! I was diagnosed in April and briefly viewed this site while researching info. Negative outcomes proved too upsetting at the time and I wanted to remain optimistic, so I stayed away. I have since had surgery (retrosigmoid on 5-29-12) and now check this site almost daily. I am so grateful for the information, and to know I am not alone.

My history:  52 yr old w/hearing loss on my right side.  I figured it was part of the aging process and that I might need a hearing aid...no big deal.  MRI showed AN that was approx 2.8cm at its largest, with impingement on the brain stem.  I thought Gamma Knife was the way to go, but decided against it when I was told I was on the cusp due to the size of the tumor. When I heard there was the possibility of the tumor swelling before shrinking, coupled with the fact it was already pressing on the brain stem, I opted for surgery, with the possibility of Gamma knife down the road. Surgery went relatively well, except facial nerve started to deteriorate at one end. Majority of tumor debulked. Will know more after upcoming MRI.

My frustrations primarily deal with the facial issues (lost my smile, taste is way off, eye is messed up), and limited  post surgical support in my area (Western NY).  I knew facial paralysis was a risk, but only thought about the change in appearance, not all this other stuff! Also, the right side of my head feels "off". Thanks to this site, I've been able to cope.

Happy to report that I returned to work (as a Radiology tech) full time last week.  Feel like a freak, but so happy to be able to work!

I'm just scared about the future (alot of "what if" questions).

I promise that any future posts will be kept short!

[Jim Scott]

Hi, Martha ~

Thanks for posting!  Your AN post-op frustrations are relatively common but may be temporary.  Returning to work is a major step in recovery so you are definitely on the right track.  Unfortunately, AN surgical recovery often (but not always) takes longer than we would like (overnight would be fine!)  As we like to say: it does get better.

Please feel free to ask any questions you may have.  Many of our members have been where you are, now, and can offer constructive advice & suggestions.

We'll look forward to your next post.   

Jim

[leapyrtwins]

Hang in there, Martha.

You shouldn't feel like a freak; you should feel like a warrior.   You've been through a lot and your surgery was only a few months ago.

As Jim said, recovery from AN surgery takes time and returning to work is a major milestone.

Facial nerves especially take time to heal and your metallic mouth should leave you in time.

Don't be so hard on yourself,

Jan

[mindyandy]

Martha
Welcome to our wonderful group. There is a wealth of information here and also we all know what you are going through. We all support one another and rely on eachother for information. If you have questions or just need to vent don't be bashful.

Mindy

[MDemisay]

Dear Martha,

Welcome to our wonderful community here! We all are welcoming, we also know how you feel as a newbie for we were once new to this ourselves. Let me invite you to fully explore and take advantage of this wonderful website.

I should say that in 2004 I had to walk this road alone.....through my inexperience I overlooked a lot of things that shouldn't normally be overlooked. How refreshing it was to have a group of people with whom I could commisserate in 2012! I would encourage you to go to a local ANA group meeting when you canto further decrease the sense of isolation that you may feel.

But let me reiterate, that it is  indeed a priveledge to be among such a truly warm group of people such as this.

We are all in your corner! Please feel free to discuss anything your frustrations and concerns openly this is the place to come as you begin your path to wellness.

Let me mirror Jim and Jan in encouraging you in your recovery! Don't give up hope, though it may seem trite (and a bit like a well used political phrase), at least you have here to come when you are frustrated. Use it often you will find it a Godsend!

Mike

Please use this forum as a sounding board, you are not alone!

[martha]

Thanks for all the welcome wishes!

Jan, I don't get a metallic taste. The first couple of months, things just tasted different. More recently, things that should taste sweet (like chocolate or popsicles) actually taste salty. Not sure what to make of it.

 

[geexploitation]

Nerves can take a while to heal, so I'll wish you an optimistic "good luck" on the taste, eye and face front. After such a traumatic surgery there's a ton of swelling that has to go down and healing that has to happen. (I'm crossing my fingers on that happening to my own sensation and mouth issues.) 

[leapyrtwins]

Jan, I don't get a metallic taste. The first couple of months, things just tasted different. More recently, things that should taste sweet (like chocolate or popsicles) actually taste salty. Not sure what to make of it.

Sorry, I tend to use "metallic mouth" generically to mean any time your taste is "off".

This is a common issue post op and typically goes away in time.  It's hard to say how long it will last, but hang in there; it should leave you eventually.

Jan