Still trying to figure out what to do!

[Mark_UK_73]

I posted a few months ago as a 'Newbie'.  Since that post I have had my first 6-month scan and follow-up appointment with my neurosurgeon.

Apparently my AN has possibly grown by the text book amount (1.5mm or so), and so is roughly just over 1cm but as I pointed out to the neurosurgeon because I was scanned on two different machines there is up to a a 2mm error of margin!  His view was that given my age and the natural history of AN's and the fact that I was toward the top end of the error of margin it was 'likely' to have grown a bit but there was no 100% guarentee that it had.

My neurosurgeon is a nice chap and didn't back me into a corner of what to do.  His view was that given my age etc I was likely not be able to 'watch and wait' for ever, and that although my AN is fairly small, the more it grows the more difficult it is likely to be to remove surgically.  His view is that he would push me gently towards surgery to get rid of it - he was fairly confident that I wouldnt suffer any permanent facial nerve damage and that they would insert the BAHA implant during the operation.

Whilst he is not against GK he would not recommend it for me as he feels there is not enough envidence of the long-term affects e.g. in 40-50 years time after treatment, that in older patients would not be a problem.  He did admit that although salvage surgery after failed GK would be more difficult, in reality there are not many cases that need this type of surgery.

I have asked to be referred to the GK centre so that I can get their side of the story before I make any final decisions.

Part of me feels I should go with GK because it is less invasive and so I can get on with my life - why put myself through an operation if I don't need to, but the other part of me thinks that OK there will be a recovery time with surgery but that once that is over I can also get on with life - knowing that the thing is out and I will not need follow-up MRI's for the rest of my life.

Every time I think I have made my mind up, I then change my mind!!

Mark

[cindyj]

Hi, Mark, nice to hear from you again!  Yes, the decision of which treatment to do is the most agonizing thing about this AN journey.  I waffled back and forth for six months or so...I, like you had a relatively small tumor and could have gone with microsurgery or radiosurgery.  It was such a tough, tough decision.  However, you will be able to make it!  And, you will know what's right for you - it will just feel right at some point.  Though I know you want to make a decision and get on with it one way or the other, you are fortunate that you do not have to make a quick decision.  Sounds like you are doing your homework and going about this in the very best way possible.

Best to you!

Cindy

[CHD63]

Mark .....

Good to read that your AN is basically the same, or only slightly larger.  That is good news.  This means you do not need to be in a rush to make a decision for treatment ..... unless your symptoms (hearing loss, for example) are getting worse.

His view was that given my age etc I was likely not be able to 'watch and wait' for ever, and that although my AN is fairly small, the more it grows the more difficult it is likely to be to remove surgically.  

I am not sure what your neurosurgeon means by more difficult to remove surgically unless it started growing very close to the brain stem, which could make a difference in how long you wait to have treatment.

I do not know anything about radiation treatment possibilities in the UK, but here in the United States the protocol for radiation of ANs is rapidly changing.  New research in the way of longer studies now is finding that the precise locating and less radiation of the newer GK and CK treatments is yielding far fewer side effects than previously.  There seems to be a difference of opinion on whether radiation makes possible surgery later more difficult.

For some of us the issue was one of whether or not we wanted the tumor removed or the growth of the tumor stopped while staying in one's head.

I was a little puzzled about the BAHA implant being done at the time of surgery.  Your first post indicated high frequency hearing loss.  Has your hearing decreased more in the past six months?

Depending upon the surgical approach taken, sometimes hearing can be saved.  I do not think hearing can ever be improved from what you currently have and most times you will lose at least some more but many of us have retained at least some of our hearing.  Is your neurosurgeon recommending a translab approach?  If so, that would result in total hearing loss and the reason he is saying a BAHA could be inserted at the time.

In any event, you have time to do your research and at some point in time you will know which decision is right for you.  No one should try to sway you to their particular choice for treatment.

Best wishes and let us know how things are going.

Clarice

[ppearl214]

I do not know anything about radiation treatment possibilities in the UK, but here in the United States the protocol for radiation of ANs is rapidly changing.  New research in the way of longer studies now is finding that the precise locating and less radiation of the newer GK and CK treatments is yielding far fewer side effects than previously.  There seems to be a difference of opinion on whether radiation makes possible surgery later more difficult.

I know of many GK sites in the UK.. and now a CK center on Harley Street in C. London (their website:  http://www.cyberknifecentrelondon.co.uk/)

Phyl

[Debbi]

Hi Mark -

I think you are well advised to look at all your options before making any decision.  Given the relatively small size of your AN, you probably have all options open..

Clarice raised a good question about type of surgical approach relative to the Baha.  I know people who've managed to retain some usable hearing with both the Retro Sigmoid and Middle Fossa approaches (never with Translab). This is a question for the surgeon. 

Keep us posted - and good luck!

Debbi

[Jim Scott]

Hi, Mark ~

I can only compliment you on your sensible and methodical approach to choosing a treatment methodology.  This is, without doubt, the most difficult part of the AN experience.  Some of us (Jim raises his hand) didn't have to decide.  The size of the AN when discovered (via MRI scan) made surgery the only option, and in my case, the sooner - the better. 

Getting the opinion of those medical professionals performing radiiosurgery is an excellent idea and, I trust, one that will ultimately help you come to a decision on your treatment. 

Frankly, at this point, I wouldn't seriously consider either approach (surgery or radiation) until you have all the facts. Your AN is small and you have some 'breathing room'.  I know you'll continue to use it well.  Here's hoping you have a productive consultation with the folks at the GK center.  If we can be any further assistance, just ask. 

Jim

[Mark_UK_73]

Hi all, and thanks so much for all your encouraging posts.  As you can probably tell I am a rather methodical person who likes his facts in a line before making a decision!!  Often you feel that you are not doing things in the most helpful way to yourself, but you have all encouraged me to know I am going about this in a sensible way.

My neurosurgeon has advised me that he would operate using the procedure that would destroy my hearing - I think he feels that the risks such as facial nerve damage, headaches etc outway the benefits of trying to save my hearing which in all probability will diminish anyway.  Apparently he is the leading 'sales person' for BAHA's in this area of the UK, as he routinely carries out the BAHA surgery in conjunction with the AN operation!

Well got to be a patient patient and wait for the GK appointment - bet my appointment letter gets stuck in the backlog of post we have here in the UK due to post office strikes!!

Mark

[leapyrtwins]

Mark -

it's probably not very helpful to say this, but your treatment decision is your choice - we cannot make it for you.  You need to do what is best for you, so educate yourself and follow your heart. 

I will tell you that, in my opinion, you can't go wrong with a BAHA.  I've had mine for a little over 18 months now and totally love it.  While it will never be like having my normal hearing back, it is a huge improvement over being SSD.

Good luck with your treatment decision.  Please keep us updated.

Best,

Jan

[Vivian B.]

Hi Mark,

I can so relate to your thoughts at this exact moment. I just recevied revised MRI findings that showed 2 mm growth and treatment within 6 weeks. My neurosugeon is recommending gammaknife. I also have 2nd thoughts, I am 46 but when I think of surgery, although most on the forum did very well, I am also a little apprehensive. I think for right now, your are doing the right thing to at least have a GK consultation. Let us know as I am waiting for miy consultation as well and would love to share or compare recommendations. Best of luck.

Vivian