just introducing myself

[Will]

Hi all,

Hope you all are doing well. I just found this forum last night and joined a few minutes ago. Just wanted to introduce myself and say thanks for allowing me join. Hope this is the right thread. It is really nice to know one is not alone.

I’ve read quite a bit on a lot of forums over the last month and a lot of people have been real troopers and should be commended for going through their ordeals with very positive attitudes. What better forum than the one that says it all…. “Acoustic Neuroma Association�.

A quick synopsis of my very uncomplicated story. Ten to twelve years ago had to start positioning myself on my wife’s left during our evening walks to hear her. Up until two months ago it’s always been just a bad left ear, both of my parents have hearing aids in both ears, I thought just normal aging. MRI Aug. 4, 2008, dx – left AN 1.5 x 1.5 x 1.6 cm with cystic central necrosis.  My ENT referred me to a Neurotologist that he said he would trust with “hisâ€? own brain. Bright young guy had done >300 AN’s. He spent one hour explaining everything in great detail and answering every question. My wife and I concluded in 5 minutes that surgery was the only way we should go. I scheduled surgery within one week, tinnitus, pressure, and general anxiety were getting worse. Second pre-op visit he spent just as much time again.

Oct. 20th translab approach, I had lost 90% of hearing in the left anyway over those 12 yrs, but still have 90% of hearing in the right. Surgery was 12 hours long. The usual fierce headaches afterward well managed with narcotics, no nausea, (very well managed with scop patches, and anti-nauseates). Tinnitus remains at same level as pre-op, headaches nearly gone now, managed well with Motrin. Just started Vestibular rehab. which I highly recommend, and doing well 3 weeks post-op. Looking forward to BAHA.

Thanks for letting me share my story. Looking forward to gaining insight through your stories. The lady from Bulgaria is a real trooper, I wish her all the best, and will pray for each and every one of you.

Take care,

Will Scoggins

[kimbo]

Will

Welcome to the forum a place of support and a wealth of information from people's experiential learning.  Like you I was diagnosed in Aug 08 but because my symptoms are minimal I have chosen to wait and see; MRI due in Feb 09 (read signature).  I do believe I have had the AN for years because I lost my hearing significantly 4 years ago but in reflection I believe I have had a hearing problem for a lot longer.  If I had been diagnosed with an AN 4 years ago (My ENT advised to have an MRI then but I got too busy) now I would be celebrating being in W&W for at least four years.  I don't want surgery until I have to.   It sounds like you are doing really well in your recovery keep up the good work. What is cystic central necrosis? 

Take Care

Kimbo 

[Jim Scott]

Hi Will, and welcome.

I'm pleased to learn that you've gained something from the website and the forums and have decided to join and post.

Your AN story is relatively straightforward and, fortunately, with few post-operative complications.  I trust your recovery will continue unabated.  Meanwhile, thanks for your contribution and please plan to visit here often.  I'm sure you'll contribute as much as you learn.

Jim

[MKLady]

Hi Will,

Glad you have found us.  I'm also glad to hear you are doing well.  The hard part is over, now time will heal us.  On second thought, maybe that is the hard part.  Patience is sometimes difficult but having found this website and knowing I'm not alone in this battle has made a huge difference for me.  It has especially been valuable to me post op to learn what to expect.  Stay tuned in here.  I wish you health and an easy recovery.

Susan

[Nancy Drew]

Hi Will,

What a good positive attitude you have.  Sounds like you are having some good early success.  I had gamma knife Oct. 21st.  Few bumps in the road, but I can't complain much.  Best wishes as you recover and welcome to the board.  Good support and info here.

Nancy

[msmaggie]

Thanks for sharing with us, Will.  It sounds like you are in the position to hand out advice to some of us newcomers.  Welcome aboard!  Glad to see that you are doing as well as can be expected.  I have heard a lot of good things about vestibular rehab from the forum.

Maggie

[leapyrtwins]

Will -

you definitely are not alone 

I'm glad you found the forum, too and hope you join us and contribute often.

IMO you will love the BAHA - I have one myself and think it is marvelous!

Jan

[Will]

Wow, thank you all for responding so quickly. Six responses in as many hours.

Kimbo, a tumor is either cystic or not, meaning kind of a harder outer shell with a soft central portion. My Neurotologist explained that when these tumors start growing fast they begin to outgrow their blood supply in which case the central portion doesn’t get enough oxygen and dies from the inside out and becomes necrotic on the inside. Unfortunately it doesn’t die enough.

After my first posting I thought it would be more beneficial to tell people who have a fear of the surgery that with today’s modern medicine, surgical experience, surgeon experience, microscopic instrumentation and all we have at our hands today a patient with a simple AN such as mine can reasonably expect a great outcome with few complications. The number one factor I found was that one must find an outstanding Neurotologist who has performed at least >100 AN excisions. Further, the surgeon must be able to explain everything to you, especially what to expect nearly every step of the way so you know what to expect and when. A surgeon with little experience, or a God like complex, can’t tell you those sorts of things. Find yourself a good surgeon! Granted they can’t nail every specific outcome down like degrees of facial paralysis or increase/decrease in tinnitus, but they should get things fairly close so you have no surprises. No surprises makes the post-op period palatable. I know everyone's experience wasn't as good as mine, however, with a good surgeon who discusses all the options and possibilites there is hope.

I am so glad I did it and I am grateful that it was benign and I can hear at least out of one ear.

Will

[Tumbleweed]

Welcome aboard, Will! Thanks for contributing to this forum. Your insights help us all.

Best wishes,
Tumbleweed

[boomer]

Will,   where did you go for surgery and who were your doctors?

Boomer

[MAlegant]

Hi Will and welcome,
Not only are you not alone, but you are in very good company!  Glad you are doing so well.
All best,
Marci

[Will]

Thanks kindly again to all of you,  Kimbo, Jim, Susan, Nancy, Maggie, Jan, Tumbleweed, Boomer, and Marci.

Will

[Omaschwannoma]

Will,

Your wonderful outcome with surgical approach will be very helpful for those contemplating surgery for treatment.  Thanks for posting and welcome to the club!

Where did you go for surgery and who is your doctor?  I'm sure many out there will want to know this information seeing you had such a great outcome. 

[wendysig]

Hi Will,
Welcome to this forum!  You are definitely not alone  sound like you are doing amazingly well for just three weeks post-op!   I am scheduled for BAHA surgery in January too and can hardly wait!

Wishing you all the best,
Wendy

[Will]

Several of you have asked which surgeon performed this:

Joseph Hegarty M.D.
Colorado Springs Ear Associates
Board certified in Neurotology
719/667-1327