Top Tips For The 'Watch & Wait' Brigade!

[Derek]

Hi there Mickey...

As per my post in this thread on April 23rd...I tend to think that my AN has stabilised in size rather than reduced albeit I am a very happy chappie that it has not increased to any significant degree since diagnosis in early 2002.

I consider myself fortunate that to date, my only symptoms are total single-sided hearing loss with very minor occasional tinnitus neither of which cause me any problems whatsoever.

Whether or not the regime I rigidly adhere to (as per my original post in this thread) has any significance or whether my age is a factor in the stabilisation process are debateable points. However, I decided very early post diagnosis to adopt a psychological approach whereby the AN was not going to take control of my life and that I would control 'it'.  So far that arrangement has worked well for me to the extent that there are days when I completely forget that I have an acoustic neuroma and tend to treat the annual MRI scan as akin to a visit to the optician or dentist.

Until such time that my symptoms increase or the AN decides to flex its muscles (if ever) I intend to remain in the 'watch and wait' routine rather than risk any side-effects, however minimal, that may arise from any unneccessary treatment intervention at this stage.

Regards

Derek

[Mickey]

Hi Derek, Went back and read your posts. Very interesting and inspirational. I`m hoping to follow your footsteps. I`m starting at 59 with one mri follow up coming in stable 12mmx06mm. Next due in Sept. and if stable again dr. say may go to yearly. My hearing is a little off in high pitched area and have tinnitus in AN ear. Found out this all by accident because I`ve had these symptoms for years. Just recently had a bit of clog in ear which I am now trying a short stay of predisone. It`s been three days and I feel great now. I really think my hearing improved  and its agreeing with me. Four more days to go! I know a few other watch and waiters  two, ten years and one close to twenty. All seem to have the healthy lifestyle. I`m also doing neuromonics which has relieved my tinnitus. Keep in touch! Youv`e been very helpful and informative. Thankyou, Mickey

[Derek]

Just read a post over on the CK Patient Support Group site 'Brain' forum re a lady who had CK in 2002 for her AN which unfortunately has left her with total hearing loss on the affected side; constant loud tinnitus and facial numbness none of which pre-existed prior to treatment. Further, a recent MRI scan has indicated that the size of her AN has increased and further radiosurgery or microsurgery treatment is now being contemplated.

Whilst such failure of CK / GK treatment is extremely rare, it nevertheless illustrates that there are risks, however remote, applicable to the treatment of acoustic neuromas and my personal tip is that due caution and careful consideration should be exercised before leaving the approved safer 'watch and wait' mode and opting for treatment before it becomes absolutely necessary.

Regards

Derek

[Ethan.S]

Hey guys I'm on watch and wait as well. I just really like the MRI tube what can I say, those little plastic coffins are so much fun.

Anyways, Derek my question is for you specifically, and anyone else who can answer. You have on your list riding a motorcycle, I'm seriously considering purchasing one, but I'm totally reliant on vision for balance, do you have balance problems, and if you do, do you have problems riding?

Ethan

[Derek]

Hii Ethan...

I perused your earlier posts in order to familiarise myself with your antecedents and if I understand correctly, I note that when you last posted on this website in 2007 you were only 17 years of age and had been diagnosed with your AN some months earler.

Your present post indicates to me that for one so young and diagnosed with such a health problem, you have a very mature outlook and a grand sense of humour both of which will hold you in good stead during your AN 'journey'.

With regard to your query on balance issues, I did experience some difficulty in the early stages pre and post diagnosis which diminished over the ensuing months by virtue of a dedicated daily routine and exercise including regular walking over variable terrain, all of which is outlined in my posts under the thread 'Top Tips For The 'Watch & Wait' Brigade'. Nature also compensated to a large extent in that within a year or so of diagnosis I had no balance problems whatsoever which fortunately remains the situation to date.

Prior to getting my motor cycle I did lots of practice on a pedal cycle in a safe environment which I would strongly advise that you do in the first instance. For obvious reasons of personal safety please do NOT ride a motor cycle before you are 100% satisfied that your balance problems have completely abated.

Best Regards

Derek

 

[Derek]

Hi all...

A tip particularly for the newly diagnosed....do not get overly concerned (as I did) if your MRI report indicates seemiingly unnerving technical jargon. My intilal MRI report stated that I had 'prominent mucosal disease'. My consultant put it in layman terms stating " it means you have the ability to self-manufacture a lot of nasal mucus...SNOT"  much to my relief!

Regards

Derek

[Rivergirl]

Ethan,
I have rode a Harley for 8 years but I have to say the past 2 years is less and less.  I have to be having a good day with the balance and dizziness to have a good ride.  I don't feel so bad about the less riding this year as we New Englanders have had rain almost every day and I am not one to be dizzy on wet roads. I would suggest trying out a small easily handled bike and see how you are and or get a trike that may work too. Whatever you decide, wear a helmet and don't do it if your balance is off.

[Derek]

Just read a great post today in this Sub Forum by Katherine (km5)  headed 'Yippee...and post script from mom of 23 yr old son with 4mm AN' which aptly outlines the importance of seeking as many professional opinions as possible prior to opting for early and often unnecessary treatment. In the circs quoted by Katherine, a microsurgeon and radiosurgeon apparently both recommended early respective treatment for her son's 4mm AN whereas a third AN specialist queried the length of time associated to his single-sided diminished hearing which ultimately identified that his hearing problem was apparent from early childhood and therefore at only 4mm it was thought that his AN had been present for a considerable number of years and that he was a suitable candidate for 'watch and wait' monitoring which is his present preferred option.

I would personally never advocate early treatment intervention unless initial diagnosis indicates the AN is of a size requiring early treatment or regular MRI scans indicate that the tumour is enlarging and / or symptoms are escalating.

I cannot see any valid purpose in opting for unnecessary early treatment and running the potential risks associated with either aspect of the treatment options until such time that it is an essential requirement...if ever!

One of our contributors uses the following quote within their signature...'It can stay as long as it behaves itself' which I think is very apt and worthy of including as a 'Top Tip'.

Derek

[Derek]

This tip is specifically for UK based 'ANers' but could apply elsewhere if the criterion applies...

My medical insurers recently declared that they would adopt an upper age limit for clients which instantly precluded me from cover and because of my pre-existing AN condition I have been unable to find an alternative insurer who is prepared to cover me albeit my hitherto privately consulted GK neurosurgeon has fortunately for me, agreed to personally continue monitoring my AN and offer ultimate future GK treatment as an NHS patient should future intervention become necessary.

I now have to enter the UK National Health Service (NHS) system for my future annual MRI scans in furtherance of my 'watch and wait' routine and whilst the NHS organisation is basically a good system and is cost free to patients, unfortunately, unlike the instant service you enjoy with private medical insurance, with the NHS you usually have to go onto a waiting list for treatment and procedures such as MRI scans which could mean a wait of several weeks or months. My main concern was that the NHS MRI scanners and radiographers etc would perhaps be inferior to those in the private sector?

I checked with the private hospital which has carried out my annual MRI scans since diagnosis in 2002 and ascertained that the current cost of the scan and corresponding neuro report is £450 GBP ($664 US ). On enquiring further re any perceived differences between the private sector and NHS MRI scanning system I was surprisingly informed that the MRI scanners were identical and in fact in my area the private hospital actually sent the images to the NHS for preperation of the relevant neuro report!

I was intending to personally finance the £450 / $664 to 'guarantee' a high quality MRI scan and neuro report but my simple query has saved me a considerable and totally unnecessary financial outlay. Only thing to do now is book my scan EARLY to ensure my due date in April is met!

Merry Christmas & a Healthy and Happy 2009 to all members of our exclusive AN Club!

Derek   

[Jackie]

Hello Derek and my other fellow "Watch and Wait" Brigade,

After almost 2 years of MRI's and cat-scan, and MRA, and the discovery of one Acoustic Neuroma, one meningioma and one Aneurysm, I have decided to accept these intruders as long as they remain stable. It's been a very long process, but I am so very much at peace with this and to just continue the monitoring. I totally agree with Derek and his philosophy! My symptoms of 60% hearing loss, and Tinnitis are all I suffer with and are manageable. I read everyones posts and admire all of you and the courage and determination so many of you display. I will continue to be a part of things, and wish you all heartfelt love and prayers.
Jackie

[Sheryl]

Derek - As you and I are running neck and neck as the longest "wait and watcher", I was wondering if any of your doctors have mentioned being able to go to MRI's every two years?  After my five-year mark, I was told I could wait till year seven but did ask to have one for my peace of mind at year six.  When I go to see my neurologist this year, she will determine at the appt. via symptoms (a few minor but liveable ones) if I should wait another year.  Also, hopefully as I read somewhere, our age (I am 62) may be a factor in slow growth.
Happy Holidays and a HEALTHY New Year,
Sheryl

[Derek]

Hi there Sheryl...good to hear from my main 'competitor' again!

Since diagnosis in February 2002 I have had annual MRI scans in accordance with the advice of both my consultant micro and GK neurosurgeons. There has never been any discussion relevant to extending the periods beyond annually and I personally would not wish to extend the period. ANs are notoriously unpredictable and it is not unknown for an AN which has been dormant for a number of years to suddenly 'flex its muscles' and increase in size beyond the accepted 2mm per year growth rate. For that reason alone I would never contemplate going beyond the 12 months period between scans. Imagine going for 2 or 3 years then finding that the AN size has increased to the extent that your ultimately preferred non-invasive radiosurgery treatment is no longer an option...unthinkable! Irrespective of whether I have to eventually undergo microsurgery or radiosurgery I would still opt for annual scans for the rest of my life...just in case!

 As I have said in previous posts, I have no problem undergoing scans and I have developed my mind set to accept them in much the same way as an annual visit to the dentist or optician...over and done with for another year. Just my way of coping with the situation I guess but I find that it works fine for me.

Sheryl, I am also a great believer in the speculative theory that the growth rate of ANs diminishes and hopefully eventually ceases commensurate with age. Whilst not particularly looking forward to the inevitable ageing process, such a theory if proved correct would be a very welcome compensating factor!

Best Regards

Derek

[Sheryl]

Hi Derek - actually my tumor is not an AN but right next door on the 9th cranial nerve.  I have heard that everything is so close between the cranial nerves that mine could imitate an AN in some respects. 

Here is my interesting theory and I was hoping for a Nobel Prize but a few researchers I've been in touch with say there is no proof.

My tumor was incidentally found in November of 2001 measuring in at 9 mm (although another neuroradiologist thought it was a tad larger).  Each MRI for the next three years showed a 1 mm or less pattern of growth at which point in 2004 it became stable at approximately 12 mm.  Ironically in that year I had breast cancer surgery and started on an anti-estrogen drug called Arimidex.  Since being on the Arimidex for the past four years, I have had NO growth or change in the tumor.  I had tried to research and tie the estrogen theory to the first three years of growth and now being on the Arimidex to the four years of non-growth.  Dr. Medbery on the CK board said there was no correlation and a well-known researcher in Boston for brain tumors (specifically meningiomas) said there was no proof.  I do get to go off my Arimidex next summer as the breast cancer studies show no benefit to continue Arimidex after five years.  Hopefully, after that, we'll still be in first and second place as competitors for a long time.

Take care,
Sheryl

[Derek]

Sheryl...

Interesting theory you have re the Arimidex aspect and of course only time will tell on that one. Sure hope that when you come off it your little pal on the 9th cranial nerve will offer no objection!

My next personal goal is for you and I to celebrate 10 years in the 'watch & wait' mode and thats only 35 / 38 months away respectively...my goodness doesn't time fly by when your enjoying yourself!

Derek

[Derek]

Hi all...

You may recall that in the past 12 months I have had to switch from private medical insurance to the UK National Health Service (NHS) system re my insurers having unexpectedly introduced an upper age limit for cover.

Just thought I would document my experience to date by way of a tip or two particularly for those who are UK based.

Unlike private medical insurance whereby appointments for MRI scans and with consultants is normally achieved with minimum delay, the NHS system can be a very frustrating experience. The current waiting period for an MRI scan in my area is about 3 months and in excess of 4 months to see a consultant.

Whilst I am fortunate in having been able to retain the services of the same micro and GK neurosurgeons who previously saw me as a private patient, my problem re early access to MRI scans and the consultants has been compounded by the fact that my GK consultant is located in a different health authority area some 200 miles away from where my microsurgery consultant is based in my home area. Whilst I am not contemplating microsurgey in the future (if I can avoid it) I nevertheless have to use that consultant's services to arrange my local MRI scans. I have therefore found it useful to personally contact the microsurgeon's secretary on a number of occasions to ensure that my MRI appointments are being processed at the earliest possible opportunity. This has proved to be an effective strategy for me.

I had my current MRI scan in March of this year and the present waiting list to obtain the results from my GK neurosurgeon means that I will not be able to get an appointment with him until August / September time!

Utilising the legislation contained within the Data Protection Act 1998 and for the modest total cost of £12GBP ($18USD) my local NHS Trust has agreed to provide me with a CD copy of my recent MRI scan together with a copy of the relevant neuroradiologist report which will be posted to me within the next few days. This will undoubtedly eliminate the unnecessary stress that I would have had to endure if I had had to wait until September for my results. There may well exist similar legislation for those outside of the UK.

Fingers crossed that my results will show no increase in growth now that I am into my 8th year since diagnosis. If the results indicate any problems then I will have obtained the information 5 months in advance which will allow me to take appropriate early action.

I will give you an update in due course.

Regards

Derek