Similar but different

[MNTim]

Every time I visit the forum I am reminded of how similar but different our situations are.  My tumor was over 5 cm when discovered and I have had three procedures to address it.  I don't experience headaches, never have.  I have severe facial weakness.  Have had a 12/7 graft to attempt to repair.  I have had a CSF leak from the suture and nasally.  I started driving within a week of being released from the hospital.  My balance is not good but I don't need assistance.  These are examples of my situation.  Many of you have them, many of you don't.

What I find on this site is that there is at least one person who has experienced every one of my issues.  The information that is provided is invaluable.  Most of this information was not provided by an trained "expert" in the industry but by someone who has experienced it. 

The information on the vestibular system is huge.  I did not have a clue about how the system worked until the article was posted.  Anyone who is having a procedure needs to read it.  It is one thing that affects all of us.  This article made me realize that I needed to seek out a trained professional to assist me with my balance issues.

This is just one example of the benefits offered here.  As I have said before "I wish I had utilized this site early in my diagnosis."

Thanks for sharing.
Tim

[leapyrtwins]

One of the things I find most interesting about ANs is that there seems to be no correlation between tumor size and number and severity of symptoms.

There are lots of cases on the Forum of people with small ANs that caused big and numerous symptoms and on the flip size there are people with large ANs that caused small and few symptoms.  There seems to be no rhyme or reason involved.

And like you, I find it interesting how we all have unique AN journeys.  I'm SSD, but don't have headaches (despite the fact that most will say retrosigmoid patients generally have them), didn't have a CSF leak, and experienced very slight facial paralysis (again something that seems contrary to the retrosigmoid approach). 

I also find it very interesting the things those of us who had surgery experience post op.  I had massive nausea, double-vision, and no pain; yet others I know had no nausea or double-vision whatsoever and had pain.

Just goes to show ya, like your subject line says, we're similar but different.

Jan

[Jim Scott]

Tim ~

One of the exasperating things about having an acoustic neuroma is the diversity of effects the tumor has on an individual.  This is why it's impossible to predict the outcome of surgery or radiation, as some folks request.  The best we can do is offer generalizations and of course, never forget to make the caveat that whatever our experience was - good or not-so-good - it cannot be considered a template for any other AN patient.  Still, a lot can be learned here.  I learned how fortunate I was in many respects.  Thanks for the generous words for the ANA website discussion forums.  I hope they'll continue to be helpful to you and others. 

Jim