THE YELLOW FLAG

[MDemisay]

Do you know what a yellow flag means in car racing? It means slow down.

Do you know what a positive result on an MRI or an ENT look of concern should do to us? Make us SLOW Down! It is used in both cases as a warning.

I knew this title would grab your attention! There is a reason that I am here, and that reason is to tell you that with the advances in medical science today that have come about, that we in the AN community are
Very lucky that we have little messengers come to tell us it's time to slow down.

I was very lucky! I had my body tell me several times with several d ifferent things that happened to me throughout my life my many falls, my ear fullness , my partial deafness.

I ignored many signals! If this were a road race, I would have worn out quite many yellow flags!

My point is pay attention Newbies and Watch and Waiters you may have limited time to gather your resources and act!

My point is while I have come back from 30 plus years of living with the remnants of multiple strokes to tell you all that this is nothing!
The human brain is incredibly resilient and is an terrible thing to waste!

Let this AN adventure that we all share be yet another 
It IS an opportunity to slow down, reorder your priorities in your life and do something for yourself! It all starts with paying attention to your YELLOW FLAG!

You SHALL conquer this, but you must decide to act!

Nuff said!

Mike

[Lou]

Hi Mike


well said, as always the one with the wise advise
Thanks as alwas

Lou x

Hope all is well with you and yours x

[chloes mema]

Thanks Mike, I needed that!

Karen

[appleblossom]

Well said!  I have noticed that since I was diagnosed, my perspective has changed greatly.  As I was cleaning up a red kool aid mess made by my son, I found myself GRATEFUL!  Instead of feeling like, ugh, i have to clean up this mess; I was happy and said i GET to clean up this mess.  I know it could be a lot worse.  I am grateful it's not cancer!  I'm grateful for everyday I've been given.

[MDemisay]

That's the ticket everyone slow down,

Appreciate the little things in life!

Mike

[millie]

Thank you Mike.  I am really starting to count my blessings every day.
The meeting last week was such a help and it was wonderful to see you there.
I hope this is a good day for you.
Mil

[MDemisay]

To Millie and all of my wonderful friends I've made here,

Life is too short! If I have been helpful to you, great! It is hard to imagine the lonliness and isolation that I felt before becoming involved in the ANA. Which is why I started this blog called THE YELLOW FLAG.

You have to realize that I ,in my ignorance ,was not paying attention to my own signals. I was to caught up in living life (the best I knew how)and helping to run a family business (one which sheltered me from many things). I now have a much wider circle of influence and people that have something in common with me (those of you here).

Whereas before, I was being a solitary figure in my own family (growing up with 3 AVM's), a sort of home grown hero. It is tiresome! Hero worship causes jealousy especially when it is among siblings. My own relationship within my own extended family has suffered as a result. Plus being diagnosed (in 2004) with an AN. 8 years ago, my life was thrown into turmoil again, not a pleasant experience reliving a 30 year old nightmare of brain surgery!

Now at least for me, I know that I was not a hero (what a relief!) but a mere man growing up with a disability. I am very thankful for that.

But part of me wants to be able to pay back what I have learned since.

 I have learned that only with group support can one go through this and not suffer from as much depression as I went through. I was on the verge of depression again before coming to the ANA forum.

Please folks, get your lives back on track, slow down but don't stop! Life doesn't stop because of an Acoustic Neuroma!

There are other things, surely, your lives will have changed! For me, because of this forum and the support of those of you in the support group that meets at NYU, my life now seems like it is a cup that overflows with enthusiasm, and has changed from one of being just barely half full.



Look at all the positive things you will learn (that other people won't) until after diagnosis:

1. you will know who your real friends are (this maybe the hardest lesson to learn)

2. your life will slow down

3, unimportant things will drop off or become less important to you

4. things will begin to come into clear focus

and 5. if you are on the other side of treatment (as I am) things will seem to smell sweeter, things will appear brighter, sounds louder , touches all the more special!

So go ahead and be happy people!

This is an opportunity to repriortize your life!

Your friend  ,

Mike

[MDemisay]

Dear AN friends and newbies,

Please take an opportunity this weekend to slow down, and appreciate your life and breathe a little, take some time for yourself for a change be it an hour. Meditate on your own wellness or pray whichever you prefer. Give your research a rest and do not panic. Your friends, all of here will be with you when you return to posting. Now go and relax.

Mike

[skipg]

Amen and Amen! Going to a family reunion in PA this weekend. I love to go to the Allegheny Forest where time seems to slow down. No traffic, no shopping centers or malls, people are friendly and stop to say hello, and abundant wildlife that make you enjoy nature at its best (especially the bears that are starting to roam into town). I love to watch the grass grow and the leaves fall. Time to get away and enjoy the beauty that God made for us to enjoy and appreciate. Tuesday will be decision day for me and I trust everything will come together. With God, nothing is impossible. I had the opportunity to ride up Thursday on the Harley, but I am grateful to be going tomorrow morning with my wife and two adult girls. For me that was a major change. It has been my motto to ride hard and if life gets difficult, ride harder. Thats why I rode 3500mis, 6 days in June. Life is good! Take the bad but let the good prevail. Thanks Mike, you are a true Barnabas, an encourager.
Skip

[millie]

Way to go, SkippyG!

[MDemisay]

Dear Skipg,

Good luck tomorrow, I will be praying for you on your decision day,( God is with us all) HE shall be there for you as well. I am glad that you took this opportunity this weekend to get out and appreciate what God has given us,a truly beautiful world full of opportunity for those slow down  to look closely! Good for you!

For all of us, this is a hard decision to make but by stopping the research and slowing down to appreciate life, it should make deciding all that much easier and more clear when we come back to the research and finally decide.

Lastly, thank you for your compliment that I am wise, I do not think I am wise, I think that God has given me quite a few clues to our shared illness. It is just my dumb luck to have found you kind people after all this time.  Each of your stories has inspired me! It made me realize that I can give back by telling my story.

People, don't make the same mistakes that I have made by completely ignoring my Yellow Flags. I wish I had noticed earlier in my life perhaps I could have avoided the second brain operation, perhaps I could have avoided being SSD, and perhaps I could have avoided having my left balance nerve cut (fortunately for all of us, we all have two).

Looking back, is much easier than looking forward, it allows one to say, how much different my life would have been had I paid attention.

But all of that is behind me now, I can only be a reminder (like the crashed car on the highway) that you see to say to you all don't be like me!

The sincerest form of flattery is NOT imitation in this case!

If I get even one of you to say "You know that guy Mike was right, I should be listening to what my body is trying to tell me!" I will have been successful at something!

Go forward Skipg! God is with you!

Remember the old trite saying "Hind sight is 20/20?" Focus on foresight! Decide as soon as it "feels good" to decide then act! God will be with your decision if you do the proper due dillegence yourself. Trust yourself to go with your gut!  Then meditate to wellness!

Mike

[skipg]

Tuesday is almost over. My wife and I had a 3 hr consult with a Proton expert, talked to Loma Linda and MGH, reviewed all data I could find, and had 4 phone calls from experts while relaxing in the woods. Should have turned my phone off. Anyway we decided to go with 30 treatment Proton if allowed. Insurance is denying so far. 2 more appeals to go. I had hoped my yellow flag would have gone to green, but that's ok. Time is on my side. At least the surgeon I saw encouraged me to go with radio-surgery and explore proton therapy, which he knew little about. I may have to got insurance topic when I find out more. Proton Therapy is a fascinating topic and now seems to be very effective and precise.
Skip

[MDemisay]

Skip,

Remember due dillegence includes researching all your options and then deciding which is best for you based on all options. Since I don't know what Proton therapy entails , you have an advantage over me. My question is this:

 Does receiving Proton therapy preclude you from receiving Gamma Knife or Cyber Knife?
 If you want to do a little more research on Proton therapy then you should obtain  the  ANA Conference in Cincinatti in 2011. I have downloaded it and it is on my ipad. Also, I don't want to worry you but there is a reason that neurosurgeons prefer to operate first. then if it grows radiate. That information is also on the CD. You may obtain it by calling the ANA offices in Georgia.

Mike

[skipg]

My wife and I attended the 2011 Symposium and were very enlightened and encouraged by what we heard. There was not a representative from Proton Therapy there and we knew nothing of its existence. The latest report on Proton therapy which is over 5 years old indicates a 100% tumor control. The biggest negative is hearing loss prevention, which mine is shot anyway, down around 31%. I have not seen any new long term studies yet. The Dr I consulted with has markers placed in your skull for reference points and if the need arises he can use those later if there is regrowth. I just had an appt with an neurosurgeon today who does the marker placement (he and his partner also do AN surgery) and he spoke very highly of the doc at the proton center. He stated that he is one of the tops in the country for proton therapy. Still waiting for insurance to see if proton therapy will be approved. The cost is high due to the 30 treatments.

Sad time in PA as they tranquilized the bears and moved them far away. There will be more. Problem is the people who continue to feed them and try to make pets of them.

[JWW]

The neurosurgeon I saw that diagnosed my AN is NOT a believer in Proton therapy. He also, has a Ph.D in physics and said "there is not enough information and studies out there regarding proton therapy to control where it stops.....thus an explosion where ever it ends."

One brilliant doctor's opinion. He also said, "the doctors that push proton therapy have to pay for their machine!"

JW