When is it the right time to continue to watch/wait.....

[ppearl214]

*tip-toes in from hiatus to start a thread in this new forum*

Ok, folks.... as it was really bothersome to me during my wait and watch period....

When and how long it is the right time to continue to watch and wait vs. when is it the right time to make the decision for your AN treatment?

*tip-toes back out to continue hiatus*

Phyl

[Derek]

Hi Phyl...

Great to see that the new forum has finally surfaced and many thanks for your involvement.

I am now well into my 6th year of 'watch and wait'  following diagnosis in 2002 and will continue in this mode until such time that my annual MRI scans and the advice of my neuro indicates that medical intervention has become necessary whereupon I will opt for GK as my preferential treatment choice.

My decision is based upon personal preference and circumstances in that thankfully, at age 63 and now retired, the only symptom of my 1.9cm AN is single-sided total hearing loss and very minimal tinnitus which I am now fully accustomed to and which is of no significant problem to me. I therefore see no personal benefit to opt for medical intervention at this time which would involve unnecessary risks however slight they may be. There is also the probability that ongoing technical advances will undoubtedly result in future improvements to treatment options for ANs with corresponding reduction of post treatment side-effects. I therefore intend to fully enjoy my current active lifestyle and good quality of life for as long as I can!

In my opinion the 'watch and wait' mode can continue indefinitely notwithstanding that you are comfortable with the knowledge that the 'booger' still remains in situ; your symptoms are minimal and remain static; your annual MRI scan results indicate that there is no significant change and that your neuro advice is fully supportive of your decision.

Derek

[Desilu]

Hi Phyl,

I think it is a very personal decision. When I was first diagnosed, I thought I was going to die, real soon, when I didn't die, I realized, hey, I still have some time left. Then I went through the denial stage. When the tinnitus wasn't bothering me, I just forgot about my AN. Then each year about a week before my annual MRI I would start to get nervous. When the report would come back, minimal or no growth I would revert to the denial stage.  It wasn't until 5 years later that my AN decided to grow that I really took my situation seriously. There was no denying that this "THING" was growing.

It was then that I decided to research my options. Before that I would have never thought of looking on the internet for help. I thought I was the only one that had an Acoustic Neuroma. Had never heard of it before I was diagnosed with one. Through this website and the long hours of calling people (from my doctors referral list) that I began to come to terms with my AN.

I was now older and wiser and ready to make a decision. I chose surgery. By this time I was ready to deal with the consequences (possible hearing loss, facial paralysis, dry eye and balance problems) of my decision. I went into surgey with a peace that I can't explain. I knew that I had done all that I could do on my part and the rest was up to the doctors and God.

I came out of surgery and had every consequence that I listed above. I was told by my doctors that this was temporary and it was (other than 15% hearing loss). I have not regretted my decision to this day and if I had to do it all over again, I would do it the same way.

It took me over five years to think about this. I believe that each one of you will know in your heart when the time is right!   Ann

[Maude]

I've been watch and wait for seven years now and will continue for at least two more years. When the decision is two years away, the watch and wait seems easy. I live with the symptoms daily so that doesn't change. However, I am finding as the time for another MRI and another exam comes closer, it becomes very hard emotionally. I don't think there is an easy answer either way.

[linnilue]

How I wished I was a "watch and wait."  But because the physicains I had did not full disclose the "benefits" of this concept, I went ahead and had radiosurgery.  As the saying goes "hindsight is 20/20."  I asked to wait and they said "no."  The tumor will grow and you will have greater problems.  My tumor was/is tiny 9mm x 5mm.  They scared me and so without further thought I had the radiation and ended up worse off with multiple complications from radiation damage.  How I wish I could turn that clock back.  My next MRI is in three weeks and frankly I don't give a darn what it says because there is not much I can do if it grows becasue of the radiation damage.  All of this being said though, I don't think I would have ever chosen surgery.  In fact I know for myself that I wouldn't because of all the complications.  But look what happened to me even with radiosurgery, so who knows what is best.  Watch and wait, I'm all about it. My doctor in boston has a patient he has been watching for 17 years.  Yes, that's right, 17 years !!!!!!! I wish....

[marie]

   I've been in watch and wait mode for 15 years on my current tumor.  As others have said, I, too, get a little antsy a few weeks before the annual MRI.

[macintosh]

I'm just going to drop something in here from the University of Pittsburgh site that I've posted on other threads. The points I take from it are (1) There is no universally agreed answer to this question, even among neurosurgeons looking at the same case and (2) surgeons are more likely than you might think to choose watch and wait if it's their own head they're talking about.

From www.acousticneuroma.neurosurgery.pitt.edu:

Survey Case One: You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?

Response: The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time. It had been stated in the case presentation that serial scans had already shown a small amount of growth. This tumor had been observed and was increasing in volume. Nevertheless, approximately one-third of responders continued to choose observation for a 37 year-old patient with a small, but growing tumor.

[linnilue]

One year wait and watcher here. On the advice of my doctor, I decided to wait and watch until I had a second MRI in six months to determine whether or not my AN was growing, and if so, at what rate. Well, it ended up being a year before I was able to get my next MRI, and the good news was "No Growth"! I also became increasingly anxious leading up to my MRI date, but the relief I felt upon getting the good news was also very enjoyable to bask in. I wish more doctors advised new patients with smaller ANs to wait and watch for at least six months. Many needless procedures could be avoided.

Bruce

Touche'

[Betsy]

I've been waiting and watching for barely a month now and I'm ready to admit that it's not working.  Although the severe vertigo episodes I had pre-dx have disappeared, they've been replaced with dizziness, fatigue and a tingly tongue.  I'm also having a bout of insomnia that defies medication, which could account for some of my symptoms.  Either way, I'm missing between a half day and a full day of work each week due to these symptoms.  The absences are covered under FMLA, but I'm definitely being left out of some opportunities simply because I'm not there all the time.  I really wanted the waiting and watching to work out, but it feels like my AN is controlling my life.

So for me, this is the right time to stop waiting and watching.  I have a consultation with Dr Eisenberg at the University of Maryland Medical Center tomorrow, and depending on how that goes I'll either go back to Danville for GK (possibly Trilogy) or have GK at UMMC.  I know that treatment may not get rid of my symptoms, but I feel very strongly that I need to take action before it gets any worse.

BYW, thank you to everyone who had a part in creating the wait and watch category!  I think it's an excellent addition to the forum!

Betsy

[Derek]

Re the comments relative to the degree of anxiety that we all tend to experience when the annual  MRI scanning time approaches...as an avid 'watch and wait' exponent I have now totally accepted that this is indeed part of the 'deal' of living with the AN condition.

 Irrespective of whether I remain in 'watch and wait' mode or whether I have to eventually opt for radiosurgery or microsurgery intervention, I will most definitely insist that I have an annual MRI scan for the rest of my natural.....just in case the little 'bugger' decides to reintroduce itself.

 I cannot envisage anyone post-treatment deciding to play Russian-Roulette by not having regular MRI scans.

Derek

[tsl]

Phyl,
Just wanted to add my personal thanks for your help and others  who helped create the watch and wait category.
-Theresa

[Jackie]

Hello fellow "watch and waiters"

I agree with all of you that it is a very personal, and individual decision. I think  that at the time of diagnosis, if you are like I was, I went into shock, so not much explanation of my options really made any sense to me! All I heard was "TUMOR"!!! I think Doctors should respect that fact and make an appointment for you to come back a couple of weeks later after giving you in writing what your options are. Then after a few weeks when  you have done some research into the different procedures available, then discuss the different procedures, and the pros and cons of each with your Doctor. No procedure should be allowed until the patient fully understands all of their options including "Wait and Watch"

My best to all of you, my next MRI is in July
Jackie

[Sheryl]

Hey Phyl - thanks for coming out of hiding although most of us know where to find you!!

I've waited and watched since November of 2001 - 5-1/2 years!!  My tumor is not an AN but very close as it is on the 9th cranial nerve as opposed to the 8th.  If I had symptoms, they would be difficulty swallowing and problems with my gag reflex.  What I do feel sometimes is pressure in that ear and tinnitus - same as with an AN.  It was very difficult at first to say "brain tumor" so I would refer to it as a "growth".  Now I'm more comfortable with "brain tumor" since, for the past three years my husband also developed a benign brain tumor called a meningioma.  He couldn't wait and watch as it doubled in size in six months.  He had surgery and unfortunately now has a regrowth and we are looking at radiosurgery options for him - jokingly asking for a two for one discount!!! 

At my five-year mark I was told that I could now graduate to MRI's every two years but for my mental health, I will still have them done yearly.  It was originally found at 9 mm and now measures 12 mm.  There is a question that the first MRI was "under read" and may have actually been slightly larger but all in all, 3 mm over almost six years is okay with me.  I have heard that because of technical differences (different machines, technicians, and maybe your head sitting just 1 mm off) that 2 mm +/- is not counted as a growth.  At my last MRI in November, I was told there could have actually been a slight decrease in size - so this does not seem like an "exact" science.

When would I do anything?  I would watch the size, symptoms, and it would be important to make sure there is no pressure exerted on my brainstem.  If age has anything to do with "wait and watch", I just turned 60 - well, I'll be 61 in September (Hey Bruce the 26th!!). 
Sheryl

[goinbatty]

When I was first diagnosed, I silently freaked out and read everything I could get my hands on.  The anxiety finally diminished as I came to terms with this little alien that decided to set up house in my head.  Now that my f/u MRI is coming up next month, the anxiety is returning.  Even still, I'm remaining pretty calm....so far.  I've decided against surgery and am leaning more toward CK.  Just trying to enjoy life because things could always be worse.  And for me, laugh whenever possible because without humor I definitely would go crazy. 

[madshackle]

Just trying to enjoy life because things could always be worse.  And for me, laugh whenever possible because without humor I definitely would go crazy. 

Ditto on that !

Watching and waiting is a hard choice. The stress can cause all sorts of things, lack of focus (on other things), insomnia, depression and just a general feeling of dread. I get through it and it's only been a year for me, by realizing that watching and waiting IS doing something. It's not a denial phase.

Best of luck to all of us !

Dave