Top Tips For The 'Watch & Wait' Brigade!

[Derek]

Hi all...

Just thought it might be useful to learn what activities or regimes we tend to engage in to hopefully assist in prolonging our precious 'watch and wait' status!

I will start the ball rolling with my 'Top Ten Tips' albeit this is my personal routine and is in no way intended to have any scientific basis with regard to treatment of the AN condition...

1. Annual MRI scan & neuro consultation  (regular monitoring is essential..look upon it as part of your routine such as a visit to the dentist or optician)

2. Sensible balanced diet with plenty fresh fruit, veg and oily fish  (good for all aspects of keeping healthy)

3. Drink at least 2 litres of water each day (essential part of maintaining good health)

4. Brisk 4 miles daily walk over varied terrain  (assists in maintaining good balance)

5. Daily cycling / motor cycling  (assists with balance and coordination)

6. No smoking  (a MUST for assisting with overall good health)

7. Alcohol in moderation  (within acceptible approved guidelines)

8. Complete rest of 10 - 20 minutes during the day with eyes closed and feet raised  (Assists in reducing stress)

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)

10. Engage in a passtime or hobby (keeps the mind off the 'little bugger')

 There may well be an element of psychology involved but this regime has certainly worked for me over the 5+ years since diagnosis. My last MRI scan indicated a reduction in the size of my AN and whilst it was only by an insignificant 1mm it was nevertheless a tremendous morale booster and incentive to continue with the 'watch and wait' routine.

Derek

[Bigbear]

Well done, Derek

I will add, hopefully without controversy, Prayer & meditation - which, one believes, directs us on the path to acceptance, tolerance, happiness, joy, faith, hope, and even Love.

After all, if we are to be shining lights, we must let our light show, and not hide them.

Frank

[Maude]

I think on top of the excellent list, I would add Humor.

It helps with the ringing in my ears, when I joke about it. It helps when I am always startled at work when some one walks in my office because I now have no sense of direction. It helps when I can't make out the right words and give some goofy, off-the-wall answer. It helps others relax around me when they know it is ok to laugh. It keeps me feeling in control of the situation and putting the whole thing in perspective. It is scary, but, today, I can laugh at my foibles.

[Derek]

I totally agree with the observations of 'Frank' and 'Maude'.

Determination, strength of character, will power, self belief and inspiration from your religious conviction will all undoubtedly greatly assist in dealing with the AN situation particularly so with regard to the 'watch and wait' mode.

A good and 'warped' sense of humour is also an essential attribute. I have lost count of the occasions that my AN has managed to get me out of a domestic 'hole' particularly with regard to birthdays and anniversaries where I am sure divorce would have been threatened if I were not able to blame my moment of forgetfulness etc upon my AN pal!

Derek

[ceeceek]

My personal Kudo's to those of you patient enought to watch and wait.....auuughhh. I dont think I could have taken it. Although it probably would have influenced my decision some if my little growth could have at least been positively identified..but there were a lot of ifs in my particular case.....
I loved your list, and will have to follow it for the 6mos and 1yr follow up from CK..so even though I am not on watch and wait..I will still have to wait.....so I will abide by your list to keep my sanity.
Great post!!
Ceeceek

[Derek]

Glad you liked the list Ceeceek..... the regime very quickly becomes the acceptable 'norm' once you get into it. I found the most difficult one to maintain in the early stages was drinking  2 litres of water per day....certainly plays havoc with the bladder (well certainly so at my age) until you get used to the increased volume intake!...but well worth persevering with for the long term health benefit.

Derek

[Derek]

An excellent post today in the thread 'When is it the right time to watch / wait....' by Dave (Madshackle) who after a year in 'Watch and Wait' mode has realised that it is not a state of denial but in fact is doing something positive about the AN condition.

I think that the aspect of rationalising and accepting 'Watch and Wait' as a positive step in the treatment options (when acting upon professional medical advice) can rightfully be included as a 'Top Tip'.

Derek

[pearchica]

Derek: you are AWESOME! what a great list (even for us who have had procedures done).. Thanks for being such a great leader and inspiration for all of us.  Annie

[irish211]

Hello:

This  is for all of you who are waiting and watching...I recently had my surgery for a 1.3 by 1.9  by 1.5 an  at House and could not have been happier with the outcome.

I know the anxiety is terrible but had I waited and watched, I think the tumor would have attached to my facial nerves  ( surgery showed it already was beginning but I had zero symptoms) ...as they discovered I already had no balance nerve on that side...yet I was walking normally without any vertigo or real symptoms but a full ear feeling.

I thought I was fine and was considering waiting, or gamma, as I feared surgery too....I was soooo wrong.

I travelled alone, stayed at New Otani Hotel,  on Tuesday evening,  which provides a free shuttle to House, enjoyed the hotel, Chinese restaurant, and spa there (even had a facial and oriental massage)...then went for all my appointments  on Wednesday  and had the surgery  on Thursday, intensive care Thursday evening, Friday up and trying to walk with a walker successfully, rested  Saturday through Tuesday in the hospital, and got out Wednesday morning...

stitches out on Thursday morning back at House, and Fri and Sat visited the LA area as mentioned in next paragraphs.... 
 
 
Drs. were wonderful, I awoke without vertigo, felt a little woozy and was up by the 2nd day....by the 5th, left the hospital, went back to the hotel, ordered room service and stayed there until time to go home. 

I recommend ordering chocolate ice cream via room service in the evening....watched movies , had cable, took my shower, hair was barely shaved...did just fine...so do not be frightened...

Hotel provides a free shuttle both to House and St. Vincent's Medical Center.   Fly direct thru American and request a wheel chair in advance...they board you first and take you off first that way...do not take luggage...just an overnight bag (skip check in that way) and mail it home from the hotel for $25.00...very easy....throught their business center...they also have free internet...

rooms were beautiful....no problems...I used room service for ice cream (you can tell I enjoyed that) at night and ordered a big American breakfast for 17.00...my treat to me......and I did this trip alone as my kids were in school.
 
I was determined to take a tour of Hollywood  and was  able to book it  at the hotel.  I even visited the Ole  Henrikson Spa  in Beverly Hills and did a half day of beauty as it is the only location for his  services... , could not resist....also got to see Rodeo drive on the tour and actually walked it. 

I  left my home town on Monday, had the House appointments on Tuesday (stayed   Tuesday night at guest house, thinking I would be almost at House the next morning) but you cannot stay alone there after surgery, so after being hospitalized 5 nights, was discharged Wednesday, and just went back to the hotel, on Thursday  visited the Henrikson Spa in Beverly Hills,  Friday took my Hollywood tour, and by Saturday flew home.

 Make sure it is a direct flight and prebook your shuttles from LAX round trip...$15.00 one way...

Also,  Take prime time to the airport and prebook that too...round trip....about $100.00.

Hotel was around $95.00 per night and worth it...Seton is kind of hot and depressing....no tv, phones, or people around either.

When you are discharged you receive 5 prescriptions and need to get those  filled....be prepared for that..no pharmacy at the hospital

I had to get a cab to a pharmacy from the hotel...recommend Walgreens or CVS...hotel can help on that too....but concierge cannot deliver because one is a potent pain killer you have to sign for in person. ( I never took it either).

My point is don't be so afraid as keeping this thing is a constant stress which does not leave you.
 
I returned to work 10 days later, was driving by 2 weeks, and now feel ok...just don't push bending over and coming up too quickly. Don't lift either. 

You tire easily but now one month out am fine.  Keep eye drops with you at all times in case eyes feel dry....that get better with in two weeks....but was annoying.  It is because nerve to tear duct gets bruised during surgery I am told.

My point is do not fear the surgery as it was well worth getting rid of the problem. 

Best of all, I feel 20 years younger,  as things look brighter, no head pressure or what they call foggy brain...morning headaches, mild tinnitus went away, and I did not know how lousey I felt until I got rid of the  an...

Now I know know I had thoses symptoms but could not tell until after surgery which took it all away.

I was actually really dragging and did not know it.

I thought I was stressed or over tired from work, now I feel I got a real life back and that is no exageration at all

Prior to surgery I felt lethargic with low energy....so my brain was on over drive to keep me  balanced.  I now see the difference and can't believe how much better I feel.

My advice is to leave it to House and whatever they recommend just go with it as you are in wonderful hands and they will not hurt you in any way.  Right up until the end they left the decision up to me.  No pressure at all.
 
Just get better and on with your life and best of luck to all of you!

[mhs]

Irish,
What an inspiration!  You are the bravest person, and your suggestions for travel are very helpful. 
mhs

[Derek]

Hi there 'Irish'...

Congratulations upon the initial success relevant to the recent surgical removal of your AN. You are obviously aware that you will require regular MRI scans and expert medical advice which, as has already been stated, is in itself a form of 'watch and wait'.

You have indeed been very fortunate that to date you have not had any adverse post-surgery problems and I do hope that the situation continues for you to an eventual total recovery.

Of course any form of medical intervention has attendant risks be it microsurgery or radiosurgery which is the main reason why those who choose to 'watch and wait' do so acting upon professional medical advice and regular MRI scanning in order to avoid any remote possibility of such adverse and often permanent problems from occurring.

One aspect of your post that shines like a beacon is your positive decision to decide upon microsurgery which you obviously elected following extensive research and I believe we can rightly include the undertaking of 'thorough and extensive research prior to any ultimate treatment decision being finalised' as a 'Top Tip'.

Derek

 

[Jim Scott]

Irish211:

Thanks for your positive, detailed, informative post.

Like you, I had microsurgery (+ FSR) for a large AN (4.5 cm) last year (see my signature) and have experienced an excellent outcome, for which I'm truly thankful.  However, to be totally honest, had my AN been small enough to treat without surgery, I would have.  Had it been small and not growing, I would have been happy to 'watch-and-wait'.  While, as you learned, surgery is not always traumatic and can produce a non-problematic outcome, as yours and mine did, surgical AN patients can, as Brucifer mentioned, have problems, post-treatment.  Those problems may be mild - or severe.  A lot depends on the doctors skill, location of the tumor and it's size.  Frankly, no surgeon or radiation oncologist can guarantee the outcome of either approach - or both, in my case.  This makes AN patients wary and willing to closely monitor their small AN with annual MRI scans, even if that means an MRI every year for ten years or more.  Frankly, I would do the same thing in their place.  As it is, even with surgery and radiation and a clearly shrinking AN showing definite necrosis, I'll still have to undergo MRI scans every year for many years.  I don't mind, it's certainly the prudent thing to do, but I see little difference between this mild inconvenience and expense to monitor a dying (and hopefully dead) tumor and watching-and-waiting a tumor that may not grow or may even die on it's own some day.

I celebrate all good surgical and/or radiation outcomes for AN patients like us but what approach to take in dealing with our AN is strictly a personal decision made by the patient, one hopes, with knowledge, caution and a physicians supervision.  Surgery may not always be as scary as some assume but 'watch-and-wait' is not an unreasonable approach to take, when feasible.  I respect the AN patients decision to do so and don't feel as if they need to be 'talked out of it' or viewed as wimps for not undergoing surgery that may not be medically necessary - for them.  As we are all individuals with a different 'story', our individual decisions on how to deal with our condition should always be respected.  I'm sure you do and are only attempting to be encouraging.  However, I feel that we have to allow for other folks individuality and their medical decisions, made sensibly, as most are - even to 'do nothing' - must always be respected, as they respect ours.  I'm just sayin'. 

Jim 

[Derek]

I am a fairly strong willed character, with rational thought processes and who is well able to apply common sense and logic to most of lifes challenging situations. I also appreciate the important significance of self belief and where applicable, the application of religious faith in furtherance of dealing with the aspects of extreme physical and emotional  situations such as dealing with the AN problem.

I would be interested to learn of any other positive therapies that others practice and which might be of ultimate benefit to the rest of us who cope on a daily basis with the acoustic neuroma condition and with other similar traumatic situations and problems.

Derek

[SharonN]

Maybe I just have my head in the clouds, but once my neurosurgeon advised the "watch and wait" approach, I rarely even think about my AN until January, when I have my yearly MRI.  So far it hasn't grown in 4 years, though after my next MRI I'm going to have them compare it with the first one to see if the change from year 1 to year 5 will show something.  If the change has been almost imperceptible each year, perhaps the accumulated growth will show something different.  Anyhow, I'm almost 65 and have been doing most of the suggestions for a long time just to maintain my health as long as possible.  Many years ago, when it was the fashion, I learned Transcendental Meditation, and when I'm stressed I use it.......and it works!  At least it helps. 

My doc said that since I have no symptoms other than tinnitus (and I have it in my non AN ear too!) and diminished hearing in the affected ear that watch and wait was appropriate.  He said that any surgery option would take a minimum of 15% of the hearing in my affected ear, which would effectively make it almost useless.  So I hope I never have to do it.

[Derek]

Great post Sharon and worthy of a 'Top Tip'

I have to say that I have never previously considered the aspect of Transcendental Meditation but having looked it up on Google it has generated my interest and I intend to carry out further research.

Derek