You all sound so knowledgable!

[nadia]

I was diagnosed with an AN two weeks ago.  It's about 1cm and the neurotologist I saw first has suggested I wait 6 to 9 months to have another MRI.  Is this typical? 

My HMO is insisting that I see the only doctor (apparently) in western Michigan. In the posts I have read people are talking about interviewing doctors--I feel like I'm the one being interviewed!  Is it really possible for me to make decisions about the best treatment?  I've never had a serious medical condition and I don't know how to advocate, especially with my HMO.  They are quite condescending.

Sorry if this is confusing--I am pretty flustered with this whole issue.

[ceeceek]

Hi Nadia,
Welcome to the group and sorry we had to meet this way. You will find lots of interesting facts opinions and stories as well as tons of support on this forum...so first off, official welcome!!
Second, try and stay calm and focused....these types of growths...grow very slowly so you have time to sort out all the information.....
Third....Surely your HMO has other doctors on the plan....so call another superviosr and ask, whom within a tri state area is available for this....the best option..,,my opinion only...is a doctor that specializes in both radiation treatments and surgery, that way you get a really non biased opinion as far as treatment....now, watch and wait is a common option although I am unsure about the time period for follow up MRI, but I believe typical is 3to 6 months for follow up....but, I am sure it can be longer...a lot depends upon your age also....many times these do not continue to grow...so watch and wait is a good option....
Read as much on these threads as you can absorb and research...talk to highest supervisor at insurance company and keep being persistant.....they will eventually comply.
Good luck and keep us posted and remember we are all with you.
Ceeceek

[Boppie]

Nadia, 1 cm is small enough that waiting a 6 month period is safe and okay.  But you could use the time to reasearch here and other sites for other known centers and best doctors that treat ANs.  I have read on this forum that you can send your MRI and request to have a phone consult with doctors at House Ear Institute for example.  There are doctors in Chicago and Cleveland who have seen other patients of AN.  I am sure someone on here will give you further details. 

You might already know the MRI that you have on file with your home neurotologist is your property (at least a copy of it)  Take your best friend, husband, know-it-all advocate with you to get the records.  The truth is you are your own best advocate and just need a little education to belly up to the HMO folks and tell them what you are going to do.  It is your AN and the treatment of it is your right.  Sometimes gatekeepers in offices and on the phone hand out their own "last word" and have patients accept that kind of condescending talk.  March ahead of the gatekeepers.  Best of luck to you.  

[Evan]

Research, Research & Research.  From what is pretty clear, you do not have to rush to make any decision.  Get more than one opinion.  Get copies of your MRI on disc.  Certain docs, as you have already heard will review your MRI's upon their receipt and give you an honest opinion.  There are many options, including what one doctor has already told y ou, get another MRI in 6 months.  I do not believe you have indicated what, if any symptoms you have.  Sometimes symptoms dictate the treatment.

Good luck.

Evan

[OTO]

Nadia -

If you want the House Clinic in Los Angeles will do a consultation via phone for free.   Call the Imaging Department at the hospital where you had your MRI done.   Ask them for a CD-rom copy of the MRI.  A CD-rom is easier to mail than the actual film prints.  In a day or so you will have to go down and pick it up (you have to sign a release form).   They should provide you the copy free of charge.

Search for the House Ear Institute or House Clinic on the Internet.   On their website will be an address to send the MRI.   One of the doctors will call you within two or three days.  Don't be surprised if they recommend surgery.

OTO

 

 

[macintosh]

A website that provides a lot of useful information is the University of Pittsburgh acoustic neuroma treatment site. The web address is www.acousticneuroma.neurosurgery.pitt.edu.  It should help you ask all the right questions the next time you talk to a doctor.

Your AN is small and should be very treatable. We may sound knowledgeable now, but we all started where you are--knowing nothing, and feeling panicky. It takes time to learn about this condition, but once you do you'll feel a lot better.

Mac

[nadia]

Thank you all for the information.  My AN symptoms are hearing loss and tinnitus.  It's been on-going for several years but I didn't recognize it as anything requiring investigation until my daugther entered the audiology program at the University of Washington and insisted that I have an audiogram and MRI.  Lucky to have kids!  I am 55 but will not rush into anything.  Does anyone have any experience with treatment in Michigan?

[Battyp]

nadia have you lost all your hearing or do you still have serviceable hearing?  The reason I ask is because within 4 mos after my symtpoms started I lost my serviceable hearing and by the time they actually diagnosed me I was completely deaf.  That is the downside to waiting.  You're tumor is small so don't rush into making a decision but if you are not comfortable with waiting be an adovcate for yourself!

[ceeceek]

Sorry Nadia, dont know spit about michigan.....but I am glad we have been of some help...how is it going with the HMO....keep calling keep bugging etc.....remember they work for you...you pay thier premiums and salary..remember that!
Ceeceek

[neal r. lyons]

hello nadia! in case you haven't found it yet the address is:  HOUSE EAR CLINIC
                                                                                   ATTN:ACOUSTIC NEUROMA WEBSITE CONSULTATIONS
                                                                                   2100 WEST 3D STREET  1ST FLOOR
                                                                                   LOS ANGELES,CA.  90057
SEND MRI SCANS BY EXPRESS MAIL
I THINK YOU SHOULD GET A REPLY WITHIN A FEW DAYS
                                                                                     i'm going to do it myself  best wishes, neal

[neal r. lyons]

hi folks! i had  a copy of my brain mri and med records sent to Dr. Brackmann at the House Ear Clinic in LA and
Dr. Brackmann called me within 24 hrs! i will consult with him again this morning (fri) it was great to speak with him he is a very positive advocate of the translab approach especially in the case of a big med. size tumor like mine 
     he will be traveling to Barcelona for an acoustic neuroma convention this sat. for a week he is an author and most knowledgeable  i'm definitely headed down the translab trail i,ll keep you posted  bye for now, neal

[lori78]

Well, we ARE in the know!  There is nothing better than the power of knowledge.

Ok, not goin into my details, but my AWESOME ENT did his residency in MI.  Please know I'm on a crap HMO.... w all the drsI had to see, my ENT wrote to my company to get surg out of state if needed.  I know ur tired, but it's an option.  I was happy w my HMO doc here/  I think... get radiation results in Oct affter 30 hrs of brain surg.  My AN was HUGE.  You aren't alone.  loribrown78@ hotmail.com if needed.  Lots of love, you'lll beat this!  Lori