Top Tips For The 'Watch & Wait' Brigade!

[followingHim]

My husband and I find this forum very useful, but can I just point out - some of us have not had a choice regarding the "watch and wait" status.  This has not been an option for my husband who was diagnosed with a recurrence of his AN in January of 2007.  We don't understand why this has been forced on him as we are both of the opinion that taking into account the size of the tumour, treatment would be referrable sooner rather than later.

We are actually considering moving to a different part of the country so that we could be referred to a different hospital as my husband has been told he can't have a second opinion.

followinghim

[Derek]

Hi there 'FollowingHim'...

Just wondered whether the aspects that I raised in my 2 x PM comprehensive responses to you on 12th February relevant to these same matters were progressed as I cannot envisage any alternative strategies being viable within the UK?

The fact that you are having to contemplate moving to another part of the UK in order to enhance treatment opportunities for your husband is most concerning. If I can be of any further assistance please do not hesitate to contact me.

Best Regards

Derek

[ppearl214]

(Derek, off topic, CB and I will be in the UK end December -- tix already booked.  Will be based in Dorset and some time in Central London. I know it's holiday time but any UK AN'ers I can meet would be fab. JeWeL also noted to me she lives approx 10 miles from where we will be staying in Shaftesbury, FYI. Phyl)

[followingHim]

Hi again Derek,

My husband wrote a letter to his neurosurgeon explaining that he doesn't want the micro-surgery and would like to be referred with a view to possibly following the radiotherapy route but we still haven't heard anything from him.

Thank you for your kind response and we will keep you posted.

Kind regards

followinghim

[Derek]

(Derek, off topic, CB and I will be in the UK end December -- tix already booked.  Will be based in Dorset and some time in Central London. I know it's holiday time but any UK AN'ers I can meet would be fab. JeWeL also noted to me she lives approx 10 miles from where we will be staying in Shaftesbury, FYI. Phyl)

Hi Phyl...

There is a probability that me and my 'better half' will be visiting our son in CA this Christmas but I would love the opportunity to meet up one of these days. As an aside...congrats on the great news that the little bugger has continued to shrivel and I am of course referring to your AN!!!

Regards

Derek

[Derek]

Hi again Derek,

My husband wrote a letter to his neurosurgeon explaining that he doesn't want the micro-surgery and would like to be referred with a view to possibly following the radiotherapy route but we still haven't heard anything from him.

Thank you for your kind response and we will keep you posted.

Kind regards

followinghim

This sounds typical of NHS inaction...please do not be fobbed off. I am not aware how long it is since your husband sent his letter but as a starting point you could consider telephoning the relevant neuro's secretary indicating that you require an urgent response to the correspondence prior to considering your further action. From personal experience in dealing with the NHS you will have to fight long and hard to get the required result and as previously discussed there are a number of non-cost options available to you which can be used in furtherance of effecting a successful conclusion.

Best Regards

Derek

[Yona]

Hello
I am new to this list. I was diagnosed with AN about 4 years ago, I wait and watch. I feel lightheaded 24/7, but my Dr. at the House (Dr. Derald Breckman) is not recommending surgery, as the tumor is very small.  Sometimes I get very discouraged about my symptoms, also feel very tired and as if I was drunk, head heavy. Do many of you experience such symptoms? How do you cope?
Yona

[Derek]

Hi there 'Yona'...

A warm welcome to the forum and sorry that you qualified to join us albeit you were diagnosed some 4 years ago.

It is most unfortunate that you have such adverse symptoms with a 'very small' AN and one would hope that your neuro is aware and has discussed and advised on your situation.

Irrespective of the size of the AN it is an accepted fact that the exact location of the tumour can produce a variety of symptoms which can differ markedly from person to person. For example my AN is 1.9cm and I consider myself most fortunate that currently my symptoms are confined to single-sided total hearing loss and very minor occasional tinnitus.

 A search of the various threads on this forum may well produce the answers and advice that you require and hopefully someone who has your symptoms will respond.

Best Wishes

Derek

[Derek]

Hi all...

Just had the good news from my neuro that my recent MRI scan result indicates no changes and that I can continue with the 'watch and wait' routine.

An interesting aspect is that upon diagnosis in 2002 the max dimension of my AN was verified as 2.5cm yet the latest neuroradiologist report lists the max dimension as 1.8cm. Even allowing for discrepencies in the calculations re different radiologists and equipment etc I am pleased that the experts have the 7mm differential in my favour! Now I am wondering whether there might just be an element of truth in the 'myth' that as you get older the growth rate of the AN diminishes or perhaps....regresses!

Regards

Derek

 

[ppearl214]

Derek, you terrific bloke! Congrats on this news..... hanging tough and doing ok... me likes to hear that!

Cheers!
Phyl

[sgerrard]

Derek,

I calculate that as roughly 1 mm per year, so if you can make it to 82, it should disappear entirely!

It is not everyone that can report shrinkage even after treatment, so reporting it without any treatment is a double bonus.

Congratulations on a fine result.

Steve

[Derek]

Phyl / Steve...

Thanks for your good wishes.

I am rather sceptical that my AN has actually had a 7mm recession of growth rate over the past 6 years and tend to think that the original estimated dimension was somewhat exaggerated. However the fact that there has not been any meaningful increase in the 6+ years since diagnosis is indeed very welcome. Whether or not there is any correlation with the 'top tips' regime (as per my OP) that I strictly follow is also debateable but I remain optimistic that the routine is personally of benefit to me and I certainly intend to continue with it albeit I accept that it is probably more psychological than of actual physical benefit from the AN perspective.

I like your analogy theory Steve and never thought that I would actually look forward to being 82 years old...bring it on!

Regards

Derek

[Derek]

Just a wee point of interest relevant to private insurance cover, particularly with regard to those of us in the UK.

I have had private medical care cover for a number of years by courtesy of my former employers who operate a scheme controlled by a board of trustees who are also employees of the relevant organisation so therefore it is not a typical insurance company arrangement. When I originally joined the scheme (a few years prior to my retirement in 2004) I was assured that cover would remain constant without an upper age limit.

Surprise...surprise...they have just decided to change the rules and will not now cover former employees upon reaching their 65th birthday... which includes me next year!

Having regard to the salient fact that since my AN diagnosis in 2002 they have been paying the costs of my annual MRI scans; consultation fees with my neurosurgeon and agreed to pay for all costs relevant to any proposed private microsurgery or stereotactic radiosurgery, this news was initially very concerning from a financial perspective as no other insurer would provide cover for a previously diagnosed AN condition.

Fear not though...as my GK neurosurgeon, in whom I have total trust, has informed me that he will ensure that I will still be monitored by him personally; that he will arrange for annual MRI scans / consultations as per the usual format and ensure that any future GK treatment will be administered by him personally, all at no cost to me courtesy of the the good old UK NHS ( National Health Service)!!

There may well be other ANers with a similar dilemma in the future who can now be assured that the NHS can provide the same treatment faciilities in the event that the private medical care arrangement is no longer an available option.

Regards

Derek

[Derek]

I have recently found benefit from brain training exercises such as crossword puzzles and similar activities. Anything that assists in keeping the old 'grey matter' in good nick is worth trying...give it a go!

[Mickey]

Hi Derek! What is it that your doing if anything that may cause the reduction in your AN? Thanks Mickey wait +watch