Top Tips For The 'Watch & Wait' Brigade!

[KaiJiaH]

Hi Cityview,

My thyroid cyst was incidentally diagnosed during a brain CT scan after I was diagnosed AN. Luckily my endocrinologist, neurosurgeon and ENT are all ethical and I have been waiting and watch for both thyroid cyst (not cancer)  for more than 2 years.

You can see from my signature that my AN is growing. now I am on the way to receive CK treatment.

Reading your message and few other discussion, I start to wonder what can cause AN? Inflamaion, stress, thyroid issue, injured tissues...etc. I am not quite support money spending on research on - if AN is a inherited disease or gene related.

is your AN on the same side as your thyroid which has cancer? My AN and thyroid cyst are at my left side.

thank you
KJ

[alabamajane]

KJ,
jumping in here,, I also had thyroid issues. I was diagnosed with thyroid nodules and watched them (with annual ultrasounds to monitor them)  for about 25 years before one of them calcified and developed cancer. I ultimately had thyroid removed along with one parathyroid gland which was also enlarged. You may also be able to monitor yours without treatment for awhile. And as my Dr said,, if you have to get cancer,, thyroid is the second "best" to have as far as treatable and curable,,, I had mine removed in 2004 and am doing fine from that.

There is no research yet to prove a connection,, but it does seem awfully suspicious that the thyroid and parathyroid issues would all be on the same side as AN. My AN was not found until 2008, however, from the size of it at diagnosis,,, 2.5 cm,, I'm quite sure I had had it for awhile with no real symptoms. I had surgery in 2011 to have it removed.

Good luck to you.
Jane

[KeepSmiling]

Hi from the wife of a guy who had Proton Beam Treatment in 2013 to treat a 1.5 cm vestibular schwannoma or acoustic neuroma.  I really liked this top Tips List for those who are in observation mode.

My hubby continues to be fine after his 2013 Proton Beam Therapy. If you want details about his situation, just search for my posts. I wrote a lot about it (maybe I wrote too much- sorry!)

Great advice: 9. Regular check on ears ( build up of wax can have a marked affect upon hearing impairment...syringing may be required to maintain maximum performance (particularly in the unaffected ear) and per Dr Medbery on the CKPSG 'site, it is a completely safe procedure for those with AN) I will alert my husband about how it would be smart to get the good ear checked out by the second otolaryngologist (or "Ear Nose and Throat MD")who ordered the MRI and who then who diagnosed him with the acoustic neuroma. I will mention how it would be wise to check for the wax build up issues. He has not seen the doc since the diagnosis and we hadn't thought about this. We are not aware of Dr. Medbery or the CKPSG site, so thanks for the advice.

All the other tips were really great too... getting regular exercise that helps with the balance and with stress, eating foods that are known to assist with fighting inflammation...getting proper sleep... Keeping things on the lighter side with lots of laughing/humor.. Great stuff!

It is a "gift" that those who are watching and waiting are getting the MRIs.  It would have been a much better situation for my husband if the original ENT doctor had ordered an MRI. I hope you all are very diligent with getting those MRIs..please don't assume that this is always be slow growing and please do not skip the MRIs. My husband went deaf in his one ear about 3 years after his original ENT doc said he had some hearing loss in that ear. Take good care of yourselves and best wishes to all of you.

[Derek]

Whilst regular MRI scans to monitor acoustic neuromas are not something that we look forward to, there is a significant plus factor for 'ANers' in that any other latent brain related medical problems will be identified and any subsequent intervention can be undertaken at an early stage. Just a thought when looking for 'positives'!

Regards

Derek

[ANSydney]

Greetings Fellow W&W Brigaders...

Wanted to share my exciting news...

I had my follow up MRI from my February 12th, 2012 MRI last week.  The AN continues to shrink!  Here are the VERY detailed measurements and report:

April 2011 = 2.0cm x 1.8cm x 1.7cm (diagnosis measurements)

11/28/12 Report: " Once again seen is an extraaxial mass with avid enhancement in the left cerebellopontine angle with extension into the internal auditory canal, causing widening of the IAC.  However, there has been definite interval decrease in the size of the tumor.

Ten consecutive measurements were taken on the 3D Fiesta images starting at the most caudal portion of the root entry zone of the trigeminal nerve.  Ten consecutive measurements were done in the two dimensions (anteroposterior and transverse).

February 12 2012 = 10 x 6mm, 11 x 8mm, 11 x 8mm, 11 x 8mm. 12 x 12mm 13 x 13mm, 13 x 14mm, 13 x13mm, 13 x 14mm, 13 x13mm

November 28 2012 = 4 x 3mm, 5 x 3mm, 5 x 7mm, 6 x 8mm, 7 x 10mm, 6 x 11mm, 8 x 11mm, 9 x 11mm, 9 x 11mm, 9 x 12mm

Radiologist took very detailed measurements to be sure of the reduction and is now measuring in mm, not cm.  Most every measurement is less than a centimeter!  I've had each MRI done in the same place, same technician, same machine, same radiologist.

Though I'm experiencing some pretty loud tinnitus tonight (probably from my 6 year old screaming with excitement about getting Christmas tree) I am SO HAPPY!  I send you all shrinking thoughts!

xxoo,
Lisa M

Hi Lisa,

You have a very interesting post from late 2012, which I've quoted above. It shows the progress of your wait and watch tumor shrinkage, which is (rare and) good news.

I'm having trouble with your initial tumor size. In your signature, it says "AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm", however in your summary is says, "April 2011 = 2.0cm x 1.8cm x 1.7cm (diagnosis measurements)". The first measurement is different and I'm wondering if the largest dimension was 1.4cm or 2.0cm?

By the way, congratulations on your impresive tumor shrinkage.

Do you know other forum members, apart from Derek, that have had tumor shrinkages?

Cheers,
ANSydney

[LisaM]

Greetings Sydney,

If memory serves me correctly... the very first measurements I received about the AN were given to me by my Dr at House here in LA.  He interpreted what the radiologist reported and those first numbers were the House Dr's numbers not the radiologist's.  Later in the process I realized that the radiologist's numbers were different from the doctor at House.  I haven't thought about this in a very long while but I think I switched and used only the radiologist's numbers for comparison.  When I can get to it, I'll see if I can find that initial report to see if memory serves me correctly.

I've not had another MRI since November 2012 which may seem reckless to some but I've had no symptoms that cause concern.  Knock on wood...I still have my hearing... tinnitus is minimal.  I meditate everyday with mantra and I still take honokiol everyday.  I do not ever eat wheat or dairy and I do not use cell phones or other electronic devices near my head.

And no, I'm not aware of anyone else on this forum besides Derek (who inspired me to take the shrinking plunge) who has had shrinkage at this moment in time.  That said I do feel it can be done but it takes a great deal of focus and commitment.

Hope this information proves helpful.

Best, Lisa M

[ANSydney]

Makes me wonder. The 2.0 cm dimension may be intracanalicular component + IAC component (the ice cream and cone dimensions respectively). So a consist set of numbers would be 1.4 cm intracanalicular + 0.6 IAC or 2.0 cm if they are taken as one.

[LisaM]

As I said... none of this is fresh in my mind.  Pretty sure the measurements I ended up listing after original diagnosis were all from the radiologist.  This AN journey is different for everyone it seems.  The initial shock of diagnosis can be a bit intimidating but collecting information is the best thing you can do.  I'm sure there are new developments in treatment since 2011.  I read a paper way back when that led me to honokiol which was being studied as a chemo therapy for ANs. 

Keep us posted on your developments.

[Lori B]

Hi,
  I'm new . I was just diagnosed in August . I'm in the watch and wait category too. I'm in Virginia and was seen at UVA. Since  I have no hearing in my right ear , only what i call " white noise "and my AN is small my Dr. advised me to wait. Only issue I do have is some pressure. I live in the Mts and I think the higher altitude does affect me. I've noticed when I visit family , who live at sea level, my pressure seems to improve. Anyone else notice this ? Just curious.

[Derek]

Just had my latest biennial MRI scan and pleased to report that after 15 years in the 'watch & wait' mode there are no changes in my condition which remains stable albeit  the AN may be marginally smaller than the previous scan. Interestingly my otolaryngologist who has vast experience in skull base surgery and the management of ANs and who carried out my latest post- MRI consultation, stated that my original decision upon diagnosis to opt for conservative management (W & W) way back in 2002, notwithstanding that the size of my AN was then 2.5cm, has been vindicated. He further stated that in his experience as time progresses the rate of enlargement tends to diminish and ultimately stop. Accordingly he does not anticipate that in my case there will be any further growth which is mighty reassuring for me. He also said that he would advise anyone diagnosed with an acoustic neuroma to avoid surgery whenever surgical intervention is not absolutely necessary his simplistic reasoning being that the risks from surgery far outweigh those of conservative management.

Regards to all...

Derek 

[LisaM]

Such great news Derek! Congratulations!

[ANSydney]

Congratulation Derek. After 15 years it shrunk from 2.5 cm to 1.3 cm and maybe even smaller. I like your otolaryngologist's statement that "he would advise anyone diagnosed with an acoustic neuroma to avoid surgery whenever surgical intervention is not absolutely necessary his simplistic reasoning being that the risks from surgery far outweigh those of conservative management."

[Derek]

LisaM / ANSydney...

Many thanks for your good wishes.

Regards

Derek

[ANSydney]

Derek, you and LisaM are the only two on the forum that I know of that have had shrinkage.

(Most people get treatment before a 6 month follow up MRI, so it's hard to determine what percentage spontaneously shrink.)

I'm curious about factors that may cause shrinkage. So, I'd like to ask some questions to anyone that has shrinkage, or stable sized tumors.

1) Roughly how many hours do you sleep per day?
2) When sleeping, do you tend to sleep with your head positioned with your AN ear up, down or sleep on the back of your head?
3) When sleeping, do you tend to use 0, 1 or 2 pillows to elevate your head?
4) Is there anything that you can think of in your lifestyle or diet that is different than "usual"?
5) Do you take regular (or often) aspirin?

Thanks for your help.

[LisaM]

1) Roughly how many hours do you sleep per day?

i try for 8... doesn't always happen but that's what i try for.  sleep with a white noise machine which has improved the quality of my sleep immensely.  when first diagnosed my sleep was horrible and i was very stressed out.


2) When sleeping, do you tend to sleep with your head positioned with your AN ear up, down or sleep on the back of your head?

i toss and turn so who knows.


3) When sleeping, do you tend to use 0, 1 or 2 pillows to elevate your head?

just one


5) Do you take regular (or often) aspirin?

rarely take aspirin.