After 13 years of W&W-------

[Sheryl]

Had my yearly MRI and doctor (radiation oncologist even though I have not had any treatment) follow-up this past week.  Schwannoma/neuroma is still stable, although stated measurement was 1 mm larger and report says likely due to "differences in slice angulation and selection". 

Now the interesting part - after this amount of time, there was an addendum added to my report, "the differential diagnosis for this lesion would also include choroid plexus papilloma in the foramen of Luschka on the right".  I ran to Google and didn't gain much knowledge except that it is still a benign process.  Going to follow-up with neuro-oncologist for more definitive answers.

Sheryl

[CHD63]

Hi Sheryl .....

We never like to get those additional pieces of information on MRI scans.  Until you can talk with your neuro-oncologist, try to keep in mind that some radiologists like to put all of their knowledge into a report, even if it is no different than before.

Many thoughts and prayers for a still stable AN and no new issues.

Clarice

[Mickey]

Way to go Sheryl! I would think most important behind the report is how do you feel? Wishing you the best, Mickey

[PaulW]

A differential diagnosis is simply an alternative...

So you could have an acoustic neuroma OR a choroid plexus papilloma... Not both...

Basically what you thought could be an AN for 13 years might not be!!!

But as it's been 13 years... I would say the original answer was right... Acoustic Neuroma

[Derek]

Hi Sheryl...

Have to confess to being initially a tad apprehensive when I read your subject heading ' After 13 years of W&W-------' !!!

I have carried out some research and ascertained the following info which hopefully will help to allay your concerns pending your intended consultation with the neuro-oncologist.

A choroid plexus papilloma is a benign tumour of the foramen of luschka  which apparently conduits the flow of cerebrospinal fluid from the brain's ventricular system to the cerebellopontine angle space. These tumours are extremely rare and account for only 0.4% of all intracranial tumours and mainly affect children under the age of 5 years.

Symptoms include intracranial pressure in over 90% of patients, vomiting, headaches, dizziness and defective field vision.

I do not believe that you are affected by any of the above symptoms in consequence of which I am hopeful that your original diagnosis was correct and that the stated 1mm increase is indeed attributable to the technical aspects of the recent MRI scan.

I am confident that you will continue to remain in W&W indefinitely with myself always following in your shadow!

As always, my very best regards to you and to your hubby.


Derek

   

   

[Sheryl]

Thanks to all for your notes and information.

Derek and Clarice - I did find that info on papillomas and agree that since I am not under five and vomiting along with the other symptoms, that the neuroradiologist was just covering his ---.  Most radiology reports have in them:  could be, possibly, may be related to, etc.  It's called over-reading.  I'm going to try to keep my lead in this W&W race :-)

Mickey - Some symptoms, all on the tumor side, that I have from time to time are closely related to other usual problems - sinus, allergies, neck ache, full feeling in my head/ear, wisdom tooth twinges, hoarseness.  Advil and a decongestant seem to help most of the time.  I am also scheduled for a hearing test as the last one was four years ago.

But some good news - After two craniotomies and two separate sessions with radiation (the last being 2012) for meningioma regrowths, hubby's MRI was completely clear.  He does have some deficits from all the "insults" (as they call them) to his brain but we adjust.  We have the distinction of being the doctors only husband and wife brain tumor couple. 

Will keep you updated -
Sheryl

[Mickey]

Hi Sheryl! I`m glad to see your symptoms at a minimum... I do get some minor symptoms but really don`t know if I can blame them on my AN. My wife who has a "clear head" haha has more symptoms than me? The one I would really tie in is tinnitus which I`ve learned to deal with after sooo many years. Your still the Queen of the W+W brigade and was nice hearing from the King, Derek..  I`m hoping to be knighted going in my 8th year W+W.. Lets keep the faith! All the best, Mickey

[Sheryl]

Hi All - Follow-up info:

Went to the neuro-oncologist in Boston.  He carefully examined my MRI, listened to my symptoms, and gave me all the usual neurologic tests (worst one is the heel-to-toe walking) - I passed all with flying colors.  He said I definitely have a schwannoma/neuroma and not that papilloma thing.  Regarding what I feel are symptoms - a waxing and waning is okay but a slow, steady worsening without improvement from time to time is not good.  He did agree with my seeing an ENT doc as I have not had a hearing test for four years.  Best of all was, "No intervention needed at this time - see you in a year".

Hubby did pretty good but there is a spot that has had very minimal growth from last October.  It is in the bone above where his two craniotomies were.  Definitely not a meningioma regrowth.  The doc said he was going to present his case at tumor board the next day which I didn't like the sound of.  Instead he picked up the phone right there and called the neuroradiologist.  They went over the MRI together (aren't two heads better than one??) and decided this is nothing to be worried about and may be a change in the burr hole vs. effect of radiation vs movement of the skull bone where the surgeries were.  Tumor board idea was cancelled and if they aren't worried, we are going to try not to worry.  His next MRI will be in 6 to 8 months at which time I can probably have mine a bit earlier and then, hopefully, we will be on a year to year together.

Meanwhile as I post this, I am looking out the window here on Cape Cod watching a fox jaunt carelessly down the street.  It's been around for a few months and must live off in the woods.  We came almost face to face with it during a walk a few weeks ago and since it kept staring at us, we decided to do a 180 turnaround and go home another way. 

Sheryl

[Derek]

Hi Sheryl...

Many congrats...great news for you and hubby...just what us 'long-termers' want to hear and will give confidence to those contemplating the W&W route.

Best Regards

Derek