FRUSTRATED-SAW A NEW NEUROLOGIST TODAY

[agnes]

I AM A LITTLE FRUSTRATED. I WENT TO A LOCAL NEUROLOGIST, BECAUSE THE ORIGINAL ONE I WENT TO WHEN DIAGNOSED IN 2007 IS IN GAINESVILLE FLORIDA, AND HE IS NO LONGER ON MY INSURANCE PLAN. HE PUT ME ON WATCH AND WAIT...HE STATED THAT
AS LONG AS THE AN IS NOT GROWING AND MY SYMPTOMS DON'T CHANGE THEN LEAVE IT ALONE. THEN I GO TO THIS LOCAL
NEUROLOGIST TODAY THAT SOMEONE RECOMMENDED TO ME BECAUSE I KNEW THAT MY AN HADN'T GROWN SINCE MY LAST MRI
WAS IN MARCH, BUT THERE WERE SOME OTHER THINGS ON MY MRI THAT I WANTED CLAIFICATION FOR...LIKE SOME ISCHEMIC
AREAS IN MY BRAIN. I WANTED TO MAKE SURE THAT IT WASN'T STROKES OR SOMETHING. I HAVE MY TYPICAL NEURO TESTING
EXAMS, COORDINATION, ETC AND PASSED EVERYTHING. HE STATED THAT THE AREAS THAT I WAS CONCERNED ABOUT WERE
NOTHING, AND EVERYONE HAS THEM. I EXPLAINED TO HIM THAT I NEEDED A NEURO TO COORDINATE MY MRI'S AND LOOK OVER
MY SCAN REPORTS AND HE WANTED TO REFER ME TO A NEUROSURGEON. I EXPLAINED TO HIM THAT I WAS NOT LOOKING TO HAVE
SURGERY AT THIS TIME OR ANY TIME IN THE FUTURE, THAT IF NEEDED, MY OPTION WOULD BE RADIATION. WELL, HIS ENTIRE
DEMEANOR CHANGED. HE SAID THAT I DIDN'T NEED MRI'S BUT ONCE A YEAR AND I SHOULD BE HAVING A HEARING TEST AT LEAST
ONCE A YEAR. NOW  HERE IS THE THING, DR ANTONELLI THE FIRST NEUROSURGEON I SAW TOLD ME THAT THE HEARING TEST WAS NOT THAT IMPORTANT, IT WAS THE AN GROWTH THAT NEEDED TO BE WATCHED CAREFULLY. NEEDLESS TO SAY, THIS PHYSICIAN
IS NOT INTERESTED IN MY AN CARE. I THINK I KNEW MORE ABOUT AN'S THAN HE DID AND IT BOTHERED HIM. WHEN HE DID MY
NEURO TEST WITH THE TUNING FORK AND PLACED IT BY MY LEFT EAR, WHICH IS WHERE MY AN IS,HE ASKED ME IF I COULD HEAR
IT AND I SAID YES. HE LOOKS AT ME AND SAYS AND I QUOTE" IF YOU WERE DEAF YOU WOULDN'T BE ABLE TO HEAR THAT". I
SIMPLY SAID TO HIM, I NEVER TOLD YO U I WAS DEAF, I STATED TO YOU THAT I HAD HEARING LOSS. WELL THIS DID NOT GO
OVER WELL, AND I AM BACK TO SQUARE ONE. I DON'T THINK THIS MAN KNEW ANYTHING ABOUT AN'S. AS I READ THIS FORUM, MOST INDIVIDUALS HAVE MRI SCANS EVERY 6 MONTHS. WHAT IS THE STANDARD ON THIS, OR IS IT UP TO THE PHYSICIAN? BY THE WAY,
HE ALSO INFORMED ME THAT MOST OF THE NEUROSURGEONS IN THIS AREA REFERRED THEIR PATIENTS OUT OF THE AREA TO HAVE
TREATMENT DONE, WHICH MAKES ME WONDER ABOUT THE PHYSICIANS IN THE JACKSONVILLE AREA. CAN I JUST HAVE MY
PRIMARY ORDER MY MRI'S OR DO I NEED A NEUROSURGEON TO COORDINATE MY CARE FOR INSURANCE PURPOSES? I AM VERY
FRUSTRATED AND CONFUSED AND ANY FEEDBACK WOULD BE APPRECIATED. THIS IS A WONDERFUL PLACE TO VENT......

[Keeping Up]

HI Anges

Sorry you are having difficulties find good and compassionate care.

I will rely what I have been told - others may have been told other information.

I had an original MRI in NOv'08 that diagnoses the AN.  I had a follow-up in May 09 (i.e. + 6mnths).  The tumor is very small and I am asymptomatic.  Thus, I was told 12 month follow-up MRI was fine.  I asked for an 8 month followup (I like the idea of a MRI in January to plan the next step when required).  If not growth, he seemed to indicate a two year follow-up MRI may be appropriate - not sure I will buy that one - I might go for an 18 month follow-up MRI, slowly wean me from the tube of gloom

However, I have a follow-up appointment with the ENT in December (which is 7 mnths post MRI, but only 6 mnths post the ENT follow-up on the May MRI).  He wants to keep tight tabs on my hearing - as I understand it, not because we can save the hearing or likely even do surgery/radiation to attempt to preserve but to ensure I get the best care to maximize the use of my deteriorating hearing.  I had a pretty healthy step back in word recognition score this hearing test (2 months after the last one) so the ENT wants to monitor closely.  There seems to be a theory that getting hearing aids earlier on in the hearing failure process may be more beneficial in the long-term. 

So, it seems my ENT is more concerned about hearing tests and general neurological testing rather than MRIs.  HOwever, he presented it in a very agreeable manner.

Good luck

Ann

[sgerrard]

I would try to see an ENT (an ear-nose-throat doctor), or a neurotologist (an ENT specializing in skull base issues like ANs), rather than seeing a neurologist (a nerve doctor) or neurosurgeon (a brain surgeon).

If your GP can't order the MRI themselves, they should be able to refer you to an ENT in network, who can monitor your progress. I think both MRIs and hearing tests are warranted if you are in watch and wait.

Best wishes,

Steve

[Dog Lover]

He wants to keep tight tabs on my hearing - as I understand it, not because we can save the hearing or likely even do surgery/radiation to attempt to preserve but to ensure I get the best care to maximize the use of my deteriorating hearing.

Ann - is this comment from your doc just due to your individual circumstances or is his/her general conscensus of AN's in general?

If it is his/her comment in general, then that bothers me. Having an AN is not an automatic dignosis of losing one's hearing.

Also, my ENT knew next to nothing about AN's, other than when he needed to do an MRI to test for one and to refer me on to my surgeon who specializes in Otology and Neurotology. He is the one who decides when I will have MRI's and monitors that for me. (Of course, I am post-surgery, but the point is, you may want to have someone who specializes in this area monitor your MRI's etc.)

Cathy

[Jim Scott]

Agnes ~

Your experience with the neurologist was certainly unsettling.  He's obviously the wrong doctor for you, on many levels.  He clearly has an antipathy toward radiation for ANs.

In every AN case I've read about and in my own experience, the patient's doctor (in my case, a neurosurgeon) decides the frequency of MRI scans for their patient.  I was having an MRI every 6 months for the first 2 years post-op, now I'm on an annual basis for MRI scans.  My doctor made that decision, not me, although I'm fine with it. 

I live in Connecticut and cannot credibly comment on the expertise or the level of knowledge about acoustic neuromas of doctors in the Jacksonville, Florida area.  I had to travel 30 miles (to New Haven) to find my neurosurgeon, who was very experienced (30+ years) with ANs and did a magnificent job with mine, in my opinion.  I can only suggest you consult the 'Physicians' forum of this website as well as watch this space for replies from other AN patients in your area that may be able to offer you suggestions regarding AN-knowledgeable doctors that you can work with as you 'Watch-and-Wait'.

Jim

[suboo73]

Agnes,

Sorry to hear about your frustrating visit.  Yes, i have had some of those as well with local ENTs, over a 10-13 year period, so i can relate.
I now go to an ENT at a major medical center - i have to travel 2+ hours to do this, but well worth it.
My ENT recommended 3rd MRI at 9 months after no change on the 2nd. 
I am going to squeak one in at the end of this year, at 8 months, to be covered on insurance since i have a high deductible.

I am grateful to the doctors i have consulted so far - neurosurgeon, who said i should have treatment right away, radiation OR surgery.
The radiosurgeon, who said i could easily wait for treatment, no rush (!)
The ENT i currently see, who said i should have treatment if i reach 1.5 cm.
(Would you agree - alittle bit of conflicting info here - but i felt like they were all VERY caring and concerned.)

But i know it is my decision, so i said to myself - take a break and try to relax.
If i don't have new symptoms, then i will just follow the schedule of next visit.
I pray you can find a caring doctor, one you will be able to communicate with and does not judge your (potential) treatment option.
(I also can e-mail with my ENT doctor, and i really like that.)

Sincerely,
Sue

[agnes]

Thanks everyone for your personal experiences and input. I know that my tumor has not grown since 2007 and it is not that large
so for now, I will stay on the schedule that I have been on. Should I notice any new symptoms, etc, I will seek out another
physician in this area. I personally feel, that this is my body, so the decision to have treatment and what type of treatment should
be mine. We all do what we feel is best for us due to the circumstances. Some want the tumor removed as soon as they find out
its there, others watch and wait or choose to have radiation, surgery, etc. We all have to live with our decisions that we make and
just hope that we make the right choices. I don't feel that I would opt for surgery, my personal preference would be either gamma 
knife or cyber knife and I have been reading up on both of these options. Hopefully my tumor will not start growing, but if it does
I have my options in place. I went to the neurologist because I wanted coordination of my MRI, etc. I haven't had any problems with
my insurance company paying for them so far, but I wasn't sure if a neurologist needed to be seen if I got them more than once a
year or not. My primary orders the MRIs, but they are not familiar with ANs, although my primary thinks I should have it surgically
removed. There is a cyberknife here in Jacksonville and gammaknife availability, although I do questions the competency of the physicians
in this area. My husband is on social security disability and he can't even get adequate medical care here. He gets the run a round as
I did at the neurologist's office. It pays to do your homework and this web site is a wealth of knowledge and a nice place to be able
to connect with others that have similar issues. You are all very special and so helpful.   

[ghenier27]

I just wanted to mention Dr. Antoneilli is NOT a neurosurgion he is a ENT surgerion. I know this because I have a appointment with him this thursday morning. So that could be one of the problems. You should call the Shands Neurosurgery Clinic and make an appointment with them. I live in the area. I just also send you a personal messenge. Debi

[agnes]

Dr Antonelli is a head, neck and netrologist, which means he has a degree in skull based surgery, which is why my ENT
sent me to Gainesville to see him. So he does some of everything I guess.
agnes

[Tumbleweed]

Agnes, despite your doctor's crummy demeanor, I think he is right about the importance of getting a hearing test in addition to the MRI. The reason is that your tumor can degrade your hearing even if it doesn't grow in size. So despite this particular doctor's less-than-satisfactory interaction with you, he is trying to make sure you don't lose too much hearing before you get treated (if, in fact, that ever becomes necessary; it might not). My recent hearing test showed more loss than I suspected; my hearing loss was so gradual over time that I didn't notice it so much. I knew I'd lost some more hearing, but was surprised that it was 15 dB. So, yes, please, get the hearing tests regularly in addition to the MRIs. Knowledge is power. The more you know about what is going on with your body, the better you'll be able to manage having the AN and make the right decisions.

Best wishes,
TW

[agnes]

thanks tumbleweed. I am planning a visit to my primary care this Thursday, so I will mention the hearing test as well.
I need to get my results from the first one I had also so that there is a comparison of some kind. It is very hard to tell
if your hearing has worsened..due to the fact that I don't listen on the phone with that ear anymore, and also the noises
my ear or head make with the tinnitus. Always different sounds. Started out as beeps like a pager, then on to many other
sounds....rarely ever the same. It does disturb my sleep at times, I don't think its anything you really ever adapt to, or at
least I haven't in 2 years. It comes and goes for me.
Once again, thanks for your advice, makes good sense to me.
Take Care
Agnes