General Category > AN Issues

AN in DC

<< < (2/3) > >>

Raven:
Bob,

I also found out in July that I have a 1.1 CM x 0.5 AN on my left side. Pretty much everything I've learned about ANs have been from the great people on this forum. I have lost quite a bit of hearing in my left ear, woke up one morning and boom, just about gone. My only symtom is hearing loss, did feel woosey once in a while but since I've made a decision that has sort of gone away, strange but true. The tinnitus however is the pits. In an effort to preserve what hearing I have left, my age (48) and the relatively small size, I'm choosing surgery, actually having another consultation with my Dr.s tomorrow and hopefuly set the date. You are close to Baltimore as I am, so Johns Hopkins and University of Md. Medical are close by. This is round one for me as I'm bilateral and will have to deal with the right side as well, I'm in wait and watch mode now. All I can tell you is reserch as much as you can, I've spent countless hours. Going to start a little research on the pituitary gland tonight as I've got something there also..............can't wait to get rid of all of them.

Good luck and like must poeple here say, welcome to the club nobody wants to join.

Betsy:
Hi Bob,

I like your name...my dad's name was Bob, and I have a cat named Bob as well.

Welcome to the forum.  It seems overwhelming at first, but there are some things to be thankful for.  Your AN is small, so you have options.  It's slow growing so you have time to ponder those options.  And you have some excellent AN resources near by.  Plus, you've already discovered the forum!

I found out about my AN in April and I was pretty messed up for awhile.  But I kept reading and reading...and meeting with different doctors and eventually I knew what I wanted to do.  You'll get there, just give yourself some time.

Betsy

Bobtheheadcase:
Thank's guys! It is hugely comforting to know that you're here especially when no one in my circle has even heard of acoustic neuromas.

I saw the comment somewhere that in most cases the pre-op anticipation and confusion and worry was worse than anything post-op. I'm guessing there's some truth to that.

Thanks again for being here.

Bob

Soundy:
After you freak out for a week or two calm down and adopt the attitude...

I have an AN... it doesn't have me ...

That is what I did and was a watch and waiter for almost three years when surgery was finally 
done because of accelerated growth of tumor... I researched and explored options ... was hoping
to go radiation but due to lupus and some argument whether it would work well for me I
went with trans lab... almost 6 weeks post op... have had a few glitches along the way
and have gotten great advice from people here and my doctor...

Jim Scott:
Hi, Bob:

I'm glad that you found the site & the forums but I'm sorry you have a reason to be here.   :(

Fortunately, your relatively small AN can be 'watched' (via frequent MRI scans to determine if the thing is 'growing') and/or you can undergo non-invasive radiation treatments.   Time is on your side - so use it well.  You'll probably have to make a decision before too long, so I strongly suggest that you begin to prepare for that day.  From what I've read, hearing loss - to some degree - is common with these buggers (I lost mine in the affected ear as the nerve was 'squashed', according to my neurosurgeon).  However, the smaller the AN when removed or radiated, the better the chance of preserving hearing in that ear.  Still, I wouldn't count on preserving 100% hearing in the affected ear.  This is a tough thing to deal with but most AN patients do and we survive quite well with SSD (Single Sided Deafness).  It's amazing how our brains and bodies compensate for a major loss.  Of course, I hope this doesn't happen to you, Bob, but we have to be realistic.  This is a serious condition.  Treatable and non-cancerous, to be sure, but still something no one can take lightly, as I'm certain you do not.   

Some of us (Jim raises his hand) when diagnosed, had a tumor too large for radiation, alone, so surgery was the only option.  I had a very caring and experienced neurosurgeon who, in deference to my deep concern over possible nerve damage from surgery, suggested microsurgery to 'hollow out' the tumor and cut off it's blood supply, then to work with a radiation oncologist to 'map out' multiple, 'low-dose' FSR (Fractionated Stereotactic Radiation) treatments (26 in all) intended to  destroy the tumor's DNA and eventually kill the thing.  Long story short: the surgery went very well. My surgeon employed a neurophysiologist to handle the nerve monitoring.  I had no noticeable post-operative facial paralysis or other complications, aside from occasional double vision (that only lasted a few days).  I was home from the hospital within 5 days and driving again within two weeks.   I walked a lot and rapidly regained most of my impaired (due to the AN tumor) equilibrium.  3 months later I began my FSR treatments.  They were tedious but painless and I had practically no ill effects.  Later, swelling of the radiated tumor- which is normal -  gave me some discomfort but nothing a few OTC Ibuprofen tablets couldn't resolve fairly quickly.  My last MRI scan (June, 2007) showed the tumor is shrinking and necrosis (cell death) is clearly evident.  My doctor was very pleased, as was I.  This doesn't mean that anyone who has microsurgery and FSR to treat their AN will have the identical outcome, only that it was an option that worked well for me.  I present it as my experience, nothing more.  With your small AN tumor, radiation is probably the better option, but only you will make that determination.   

I concur with the observation that individual physicians will have personal biases regarding the 'best' form of treatment for you, so your job is to find out all you can (this site is a great resource) then consult with physicians well-experienced in their field (surgery/radiation) that have familiarity dealing with AN tumors.  Again, the final decision will be yours, so don't allow any doctor - no matter how 'authoritative' he or she may be - to 'push' you into a procedure you don't feel good about, just because 'doctor said so'.  You have to feel good about what you're doing and you, not the doctor, will have to live with the consequences.  They can be mild, as in my case, or severe and life-altering, as happens to some AN patients.  I like to call having an acoustic neuroma 'a minefield', because that's how I see it. 

I believe that a caring physician who treats AN tumors (not that many do) will honestly lay out all of the options for you, without bias, but this doesn't always happen, unfortunately.  My surgeon had no qualms about recommending surgery and radiation because he had seen great success with this approach recently and was cognizant of my concern about nerve damage and it's consequences.  He took a cautious, conservative approach and it worked out splendidly for me.  I really admire and respect the man (Dr. Issac Goodrich) for his compassion, caring, skill and response to my concerns.  I wish all AN patients had such a physician treating them.  Fortunately, there are other fine, caring, skilled physicians around the country, as posts on these forums will show.  I truly hope you can find one and I know that anyone that posts here regularly will try to help you in any way possible.  Stay connected with us because we care and we want to help as much as possible.  :)

Jim

Navigation

[0] Message Index

[#] Next page

[*] Previous page