Exhaustion among other things...

[Echo]

For those in "wait and watch" I'm curious as to your overall quality of life and the symptoms you may be experiencing.  At what point do your symptoms dictate moving on to treatment (if tumor growth is not the issue)?  I was diagnosed June 2012 with a 1.8cm AN.  I have not rushed into treatment, preferring to give myself one year to monitor growth, while researching what I want to do eventually.  When initially diagnosed my symptoms were primarily some loss of hearing and a few headaches.  Meanwhile my balance has gotten progressively worse. I wobble daily especially at night in the dark and I never consider going down stairs without holding onto a railing. Long walks exhaust me and leave me with a wonky head.  Thankfully, I have been able to continue working each day, however, lately I find I struggle with some pretty serious fatigue during the late afternoon.  It slows me right down! I frequently have a weird kind of headache when lying down that wakes me or causes enough discomfort that I occasionally get up for a bit in the middle of the night so it will clear - which thankfully it does usually without taking any meds. (My last MRI, 7 months after diagnosis showed a possible 1mm change.)

I'm trying really hard to keep living like I always have, but I'm quite aware that things have changed and I'm not able to keep up the pace I used to.  Just wondering, in general, if the folks in wait and watch have fewer symptoms that challenge them daily, (which may make it easier to remain in wait and watch) or do you just adapt to living like this while you wait and watch?

Cathie

[PaulW]

Watch and Wait certainly drove me a little batty.
Fatigue, problems with jumbling words, difficulty typing, lack of concentration..
plus the usual balance and hearing problems.

The advice I received was to Watch and Wait. But everyday the hearing got a little worse, and living in a cloud was frustrating.
I chose CK and the cloud has lifted, balance improved, energy levels returned, so did my hearing.

[Derek]

Hi Cathie...

From a personal perspective, I was diagnosed with a 2.5cm AN and initially experienced the usual symptoms that you have described. I took time out to research my treatment options and ultimately decided to 'wait & watch.'

Now over 11 years later following a rigid healthy diet and a moderate daily exercise routine my AN has self-reduced to 1.3cm, my tinnitus has abated and other than total hearing loss on my affected right side which does not cause me any problem, I have no symptoms whatsoever.

My advice would be to stay with 'W & W' for as long as you can notwithstanding that you have annual MRI scans and follow the advice and guidance of a neuro consultant in whom you have complete trust.

Regards

Derek   

[Mickey]

I`m with Derek on this one. The only difference is that my AN is around 1cm and has basicly stayed the same for the past 6 years. I was happy to find the W+W brigade and have incorporated most of what they believe in along with a few health hints  (supplements)  which I`ve added.  At the onset of diognosis I did feel worse but seem to have pushed thru most symptoms. I feel pretty good and lead a fairly active lifestyle Best wishes, Mickey

[Echo]

Hi Mickey,

I know we are all different, but how long did it take you to push through your symptoms? Mine seem to be slowly getting worse.  I'm a very positive person and try to keep going without giving in to this little alien, but honestly some days it's so hard to do.  I'm not sure I would make a great candidate for wait and watch in the long run, but I also don't want to rush into something until I truly feel ready.  The tumor is 1.1 cm in the CPA but the total size is 1.8.  I've been told to consider doing something once the tumor reaches 2 cm within the CPA.  As it sits currently it is slightly touching the brain stem so monitoring will be key.

Cathie

[Mickey]

Hi Cathie! Although being pro W+W every situation is different... While being W+W there ane many guidlines that you can follow to increase your health for a better chance of recovery no matter what your decision has to be. I am trying every pro active way of staying healthy with all our doings listed in the W+W posts here for reference. So far for me it has worked... Please do all your homework with every option in mind for whatever is best for your situation if intervention is required. I`m hoping that W+W works for you but also know with all the knowledge we have gained in treating AN`s that all treatment is much advanced with very good outcomes. Wishing you all the best, Mickey P.S. Never forget the power of prayer and positive thinking.

[alabamajane]

Hi Cathie,
Location of the tumor is as important if not more so than size,, as you mention yours is already in the CPA and pressing on the brainstem,, so your situation will become more dire if growth continues ,, I am not a Dr mind you and this is just my two cents worth as someone who was in a similar situation for 3yrs before having surgery Oct.  2011,,

I was watch and wait to begin with and had many of the same symptoms as you before surgery,, my main issue right before surgery was decline of quality of life,, constant intense headache, unable to continue daily activities due to headaches and dizziness ,, be careful waiting around too long before researching treatment options,,

Have you sent your CD of your MRI out to House clinic in Los Angeles yet for free phone consult? I did and many others have,, wonderful Drs that will call you and give their opinion about your particular situation ,, there are other hospitals that will do same, I am just not aware of whom they are,, others could chime in with that info,,,get other opinions from radiation Drs if you are interested in that route ,,if you are still a candidate for that,, I was not after I w&w till it entered CPA and pressed on brainstem ,, so you may not still have that option either,, but you could see,,,

If your quality of life has degraded that much ,, I would consult my Dr and several others and make a plan to move forward,, very rarely does it get better I believe once it impacts the brain stem,,,
But this is just my perspective and personal opinion,,,,so take it for just that please,,, but let us know what you do and how you are,,, we all care on here,, take care,,,you can PM  me if you like,,,Jane

[Echo]

Hi Jane,

My tumor is actually "lightly" touching the brainstem, not yet pressing on it, so yes, I am keeping a very close eye on the growth.  I've been actively researching AN's since my diagnosis and the research is just a daily part of my life now.  Like so many of us, watching our quality of life change can be stressful and challenging to deal with but I find getting online and meeting folks through this great forum has been a huge benefit. 

I have not sent my MRI to House yet, but I may still do so.  I live in Toronto, so I have been working through our Canadian Health System.  Living right in Toronto has been a blessing as I have had access to some of our countries best medical resources.  I'll keep you posted as things move along and decisions get made.

Thanks kindly for your comments and well wishes.
Cathie.