Top Tips For The 'Watch & Wait' Brigade!

[Derek]

Just had my 9th annual MRI scan and awaiting the result. For info my last three scans have been in diifferent hospitals who each use different types of MRI machine and diifferent neuro radiologists. My most recent scan was carried out on a newly installed latest model Siemens unit which reduces the time that the patient is in the scanner and when contrast enhancement is used, allegedly produces superior images with better differentiation between the brain and the tumour resulting in greater definition of the tumour environment.

You will be aware from my previous posts and from my signature, that upon diagnosis in 2002 the dimension of my AN was assessed at 2.5cm and that over the ensuing years the AN has apparently reduced to 1.5cm as per my last scan in March 2009. It will be most interesting to see what dimension my AN is now given using the latest Siemens technology etc and if it is still assessed at 1.5cm or less and with no problems being indicated, I will be a very happy man indeed.

I am dependent upon the UK National Health Service (NHS) with this process and the official results will not be made available to me for at least 2 - 3 months therefore, as per the same procedure whch I adopted last year, I will have to make application under the UK law Data Protection Act whereupon I will be provided with a CD copy of my scan images together with a copy of the neuro radiologist report then carry out an initial DIY assessment prior to the consultation with my neuro specialist for the official verdict.

I will of course initially post you with my own DIY assessment just as soon as I have the info which should be mid / late April.


Regards

Derek

Hi all...

I have now received a copy CD of my recent annual MRI scan results together with a copy of the relevant neuroradiology report and the indications are that the size of the AN remains the same with no problems being identified.

Regards

Derek   

[Sheryl]

Hi Derek - YIPPEE!!  Glad you're keeping up with the longevity group - seems we've got at least one more ahead of us!!

Take care,
Sheryl

[Jackie]

Hey Derek,

Great report, again, may it continue that way for you and the rest of us W and W! I just hit the 3 year mark, and hope to continue!
Blessings to you,
Jackie in oregon

[Derek]

Sheryl / Jackie...

Thanks for your good wishes and very best of luck with your respective future MRI scans.

Derek

[Derek]

Hi all...

Another 'tip' re caution that should be exercised in furtherance of protecting your existing hearing when riding the extreme roller-coaster type rides at amusement / theme parks...

Recently a group of physicians at Henry Ford Hospital, Detroit, MI, referred to the case study of a 24 year old male who whilst riding on a roller-coaster, turned his head to the side just as the ride plummeted resulting in ear damage known as barotrauma. This is apparently caused by hard and fast changes in external air pressure relative to the pressure inside the ear equivalent to striking the ear drum with a force of 0.6 psi or 180 decibels. The faster the ride and the greater the change in altitude, the higher the resulting force that is applied.

Therefore the golden rule when engaging in such an activity is to ensure that the head is held back and not to turn the head to the side.

Regards

Derek

[Zeitgeist]

I am so very appreciative of all of the wonderful tips, insights and caring apparent both on this particular thread and on this entire board.  I have been in the "W&W" status for a long time, but don't have any particular insight beyond luck and perhaps a bit of stubborness.  Upon diagnosis,  I was immediately told to have surgery and decided to get more opinions and options.  I just wish *this* wonderful resource had been available when I first received my diagnosis in 1996!

Regards and Warm Thoughts for All!

[Sheryl]

Wow - 1996 - that's great - keep up the good work.  How often do you have MRI's?  There's a bunch of us that are ongoing with W&W - when I think I'm almost at a "decade" it's hard to believe. 
Sheryl

[Zeitgeist]

Wow - 1996 - that's great - keep up the good work.  How often do you have MRI's?  There's a bunch of us that are ongoing with W&W - when I think I'm almost at a "decade" it's hard to believe. 
Sheryl

I keep thinking the technology is going to change tremendously so it ends up being a simple procedure...but so far that seems to be wishful thinking!  As it stands now, I go every 3 years.  I had been yearly, but at the 10 year mark, we decided that as long as I am relatively asymptomatic, to go with three years.  Sort of feels like an oil change at this point!  I am actually due for one and need to make that appointment.

How often do you go for an MRI>

[Sheryl]

I had been yearly but then they switched me to every two years.  This past December, '09 showed a 1 mm increase after two years.  They are pretty sure it is a technical difference or due to the fact that their MRI machines were recently updated so, for now, I am back to yearly. 

I do have a theory - because of breast cancer six years ago (no relation to this head tumor), I was put on Arimidex for five years which is an estrogen suppressor.  I was able to stop the Arimidex in June of 2009 and now this 1 mm change shows up.  There was actually no change/growth the five years I was on the medication.   I've been trying to research whether these schwannomas are fueled by estrogen or if it could be possible that this is a meningioma that has been shown to enjoy dining on estrogen!!  Actually my tumor is on the 9th cranial nerve rather than the acoustic (8th). 

[Derek]

Fellow W & Ws'...

Particularly so for those of us who have hearing loss on the affected side, it is vitally important that we take good care of the 'good' ear. Aside from the obvious precautions we can take applicable to theme park rides etc as previously discussed in this thread and avoiding noisy environments where decibel outputs can be harmful it is essential that we carry out regular maintenance.

In furtherance, with regard to the problem of ear wax which tends to accumulate more readily as we age resulting in diminished hearing levels, I regularly apply olive oil based ear drops thereby ensuring that the ear canal is always free of excess ear wax. I personally find that ear drops containing olive oil are prefereable being a more gentle lubricant that does not irritate the skin.

Derek

[Mickey]

I always try to apply something to at least muffle the sound coming into my ears on any occasion where excess noise is around. If I forget I pay the price of a higher degree of tinnitus for a while. I have never tried olive oil but have been swabbing my ears with a cotton stick which was recommended sometimes with alcohol every week. A few more days before my yearly MRI and I`m feeling pretty good. 3+ years since diognosis but I`m sure I have had this long before. Keeping the faith, long live W+W brigade! Best Wishes, Mickey

[Sheryl]

Hi Mickey - make sure you keep us posted and good luck.

Re:  ear wax - hubby was told to mix peroxide with warm water (about half and half) and use a dropper to put solution in each ear.  After it sits for about a minute, tilt head the other way to drain and put solution in other ear and let it sit and then tip head to drain.  Supposed to do this a couple of times a week, but we never remember and when we do, he notices much less wax on his hearing aids.  So, I guess, it works.

Sheryl

[Derek]

Yet another tip guaranteed to increase your overall fitness level...REDUCE YOUR USE OF THE CAR!

My daughter recently announced her engagement and her wedding is set for August 2011.

This has spurred me to increase my fitness level and in furtherance, over the last few weeks, I have ceased using my car or any other form of transport for any journey which is less than 6 miles.  I have also increased my normal 1 hour daily brisk walking regime to 1.5 hours and have  reduced my weakness for biscuits and chocolate bars! This has resulted in a welcome weight loss and a marked increase in stamina whereby I have reduced my waist size and best of all... my wife likes her new man! Believe me...you do not need to incur any financial outlay by joining a gym or taking up golf etc to keep fit as a good brisk walk and healthy lifestyle is all that you require but the walking has to be brisk in that you actually work up a sweat....walking the dog to the nearest lamp post etc will not suffice.

Most importantly, I have also been aware of a gradual reduction in my tinnitus which is no longer apparent and I have therefore edited it from my signature. Not  sure whether there is any correlation with my revised fitness regime but I am convinced that a sensible diet, whereby I personally do not take any additional vitamins, supplements or additives, combined with regular exercise which also assists in obtaining a good night's sleep, are a contributory factor and 'key' to maintaining a good standard of physical and mental health which I firmly believe greatly assists with the ability to cope with the AN condition on a daily basis.

Regards

Derek

[Sheryl]

CONGRATULATIONS on the good news from your daughter - what a wonderful incentive.  Your new habits are good for everyone to follow - not only those with AN's.  I've been having trouble with my knees and the orthopedic doc I went to told me that exercise and weight loss may help me avoid surgery.  Did you know that for every pound you lose, it is equal to 4 pounds off your knees, i.e., a 20 pound weight loss is equivalent to 80 pounds!! 

Sheryl

[Derek]

Hi Sheryl...

Thanks for your good wishes re my daughter's forthcoming wedding. She is my youngest and the last to 'fly the nest'! You may like to view the ceremony venue at www.holysaviours.org.uk and the reception venue at www.lumleycastle.com

Your comments re every pound of weight loss equalling 4 pounds of pressure off the knee joints is an amazing statistic and a great incentive to anyone contemplating reviewing their level of fitness.

Hoping you and your hubby are both well.

Best Regards

Derek