Watch and Wait > For those in the 'watch and wait' status

FRUSTRATED-SAW A NEW NEUROLOGIST TODAY

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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:

--- Quote ---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.
--- End quote ---

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

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