9 years of W&W

[cdove]

So, as a new member, I hate to bump Derek from his status as the longest W&W'er on the site, but I was diagnosed in May, 2001. I made the decision myself to observe this for several reasons: First, I had already had brain surgery (1968) for a leptomeningeal suboccipital cyst, and was not looking forward to more. Second, I did not, and still do not, think FSR or Gamma Knife was a good choice for me because my first surgery and followup exams involved a lot of x-rays which, at that time, were much higher doses. I am not sure what unintended consequences high-dose radiation might cause in MY case. Also, my AN is high up in the canal so there is almost no chance of hearing preservation after surgery.

After 9 years, the AN is stable. The Watching & Waiting involves absolutely no anxiety. Whatever comes, comes. I am happy that I am postponing the surgery: surgical techniques get better every year; I keep the hearing as long as possible; I avoid more radiation; I don't miss any time (for recuperation) while the kids are still home; and I avoid putting my parents through more brain surgery--the first time almost killed them.

MRIs every three years and I don't think twice about the AN in between (I'm due for a yearly ENT appointment, so that's why it even occurred to me to visit anausa.org).

I'm simply not an anxious person....as we age (52) we will get all kinds of things that we just have to live with in order to keep on living.

Good luck to all of you!

Chris

[Jim Scott]

Chris ~

Welcome to the forum!  Your 9-year Watch-and-Wait span definitely makes you the premier W&W poster.  I certainly hope your AN remains stable.  Your sanguine attitude is admirable as well as practical.  I agree that as we mature and various maladies occur forcing us to deal with physical deficits, we do so and simply get on with life. Unfortunately, some folks have insurmountable physical challenges and although most are able to adjust, occasionally the physical obstacles get the best of us.  However, most of the AN patients posting here are fighters and survivors, so you're in good company. 

Jim

[Derek]

Hi Chris...

A very warm welcome to the ANA Discussion Forum and it really is great to have another member of such longevity in the 'watch & wait' status. Sheryl, who also contributes on this site, has been in the 'w & w' mode about 4 months longer than me so there is only a matter of a few months difference between the three of us. Having regard to your previous neuro related problem your long-term decision to maintain conservative management of your AN is very logical. It would be interesting to know what the dimension of your AN was at diagnosis, the rate of growth over the ensuing years and of course what symptoms you may have had to contend with.

You also have the right mental attitude and philosophy to stay the 'w & w' course which is an essential factor in the ever ongoing battle with the AN enemy!

Chris, you may have amassed aspects of personal good practice in managing the condition throughout the ensuing years and if so, perhaps you could consider contributing to the thread 'Top Tips For The Watch & Wait Brigade' within the 'Watch & Wait' sub forum.

Regards

Derek

[Mickey]

Hi Chris! Welcome aboard! Happy to hear your W+W is doing well. I `m in the same boat going on 3 years diognosed but its unknown how long I`ve had my AN with symptoms for many years before that. In any case I have really been following a healthy lifestyle with the hopes on no intervention. So far so good. Best wishes, Mickey

[Sheryl]

Hi Chris - Welcome to the longevity group - glad to give you first place (6 months ahead of me - 11/2001)!!  Keep us posted and hope you continue to do well. 

Sheryl

[HeadCase2]

Chris,
Thanks for sharing your remarkable story.  Has the AN either grown or shrunk in size during your W&W?  We rarely get to hear first person accounts of how an AN has changed dimensions over such a long period of time.
Regards,
  Rob

[cdove]

Hi all,
Thanks for the warm welcomes from you all. I'm happy to answer the questions:
1) Growth: initially it was 4mm (awfully small). As of last May at last MRI, it was around 7mm (still small!). But hey, I understand these machines might seem very precise, but in reality are not when dealing with something that small. So my personal conclusion is that it's "about the same," and that's good enough for me.
2) Symptoms: A) I have moderate tinnitus in my L ear (AN side). It's mostly a steady whistle with occasional bursts of loud changes in pitch that area almost a humming/buzzing. The latter happens about 5 times a year. The "normal" tinnitus is worse if I drink more than a little caffeine or alcohol and considerably worse if I take ibuprofen. So, I drink just a little, moderate my caffeine intake, and avoid ibuprofen. The rest of the time I simply ignore the tinnitus because I decided to ignore it! B) I ceratinly have ear fullness (6 on a 10 scale) C) Occasional pain in L ear and L jaw hinge. The bursts of ear pain can be quite acute, but happen only 3-4x/year. No treatment necessary. D) mild to moderate hearing loss, especially high pitches and trouble in crowds!! CONCLUSION: it's all very manageable.
3) Healthy lifestyle: I can't think of anything I do especially for the AN other than avoid ibuprofen. By nature I am a grateful person and thankful for the problems I have since they could always be worse. I think this keeps the stress down, but again, it's not especially because or for the AN.
4) CHRIS' TOP TEN: 1. Upon diagnosis, get more than one opinion, but recognize that medicine is ART as well as science and GET EDUCATED on your condition 2) Make the right choice for your circumstances 3) Don't wallow too much in the treatment horror stories (particularly surgical complications)  3) See your doctor on a regular basis 4) If you've made the decision to watch and wait, ignore the damn thing between doctor visits 5) Get busy and enjoy life 6) Be grateful it's now and not 50 (or even 20) years ago...treatments are better, surgical techniques are better, etc. etc. 7) Get on with it and live! **I see that's only TOP 7...makes it easier!

Best to all,
Chris 

[mk]

Chris,

First of all congratulations for managing to stay in W&W for so long.

Could you please explain why you mentioned that you avoid ibuprofen? Have you read/heard anything against it? Just curious, since many use it quite a bit.

Marianna

[cdove]

Hi Marianna,
The conclusion about ibuprofen, alcohol, and caffeine making the tinnitus worse is mine alone. I simply realized it one day, experimented with it by avoiding then taking these substances, realized FOR ME it seemed to be connected, and decided to reduce my consumption of all three.  I will tell you that ibuprofen, alcohol, and caffeine also raise blood pressure, so maybe that's the link. I use Tylenol when I need something.

Best,
Chris

[LisaP]

Hi Chris,

I too am W&W going on 2.5 years now.  Mine is small but I have a lot of symptoms. Next MRI is in Oct of this year.

Best wishes,

LisaP

[Lizard]

Wow 9 years that's fantastic.  I find it very interesting why some people have fast growth during W&W and others can go years and years without showing growth and no new symptoms.  It just goes to show how different everyone's experiences are.
Yea, keep in going!  Cheers to another 10 years....

Liz

[davjack]

Haven't been on in a while. Reading too much scares the poop out of me. But I'm glad I signed in today. You long timers give us newbies hope
Loree