Author Topic: My Personal Gamma Knife Treatment Journal started June 10, 2012  (Read 51416 times)

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #30 on: June 27, 2012, 10:40:29 am »
Here I am again!

With nothing but a scant few facial twiches to report on DEAD IRV! So far so good! Tonight is the night I will be reintroducing myself to the Metropolitan Division of the Kiwanis Club (a member of which I have been since 2010), like those of you here on the  ANA forum they supported me through prayer as well. Tonight, I return triumphant from my battle with an inner demon (IRV). Healthy, fit a as a fiddle----smile intact!!

MNike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #31 on: June 28, 2012, 11:58:57 am »
Friends,

I did go to that Kiwanis Club meeting last night. Let me tell you they were thrilled to see me in such good spirits and apparently with no ill effects or scars from the one shot Gamma Knife radiation. They were praying for me as I know many of you were. Some thought I had been through extensive chemo therapy, some thought radiation in multiple doses. It was certainly good to be back in action as a community leader again!

One thing is obvious, that there is a lack of information as to how much information is out there about how simple this treatment is (I'm talking about GK and CK and the option of the Watch and Wait), it can't be that people find out about it on a need to know basis. We as an organization (ANA) need to step up and get the information out there and readily available. Maybe just maybe we can begin to stem the fear that comes to all newbies if they know that there are organizations like ours leading the way.

IMHO!!!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #32 on: June 28, 2012, 12:21:39 pm »
Mike ~

Kudos on your re-entry into normal activities.  It's encouraging to learn how well you're doing, post-radiation. 

As for spreading the word about acoustic neuroma and it's treatment options, that has been one of the major goals of the ANA for it's three decades of existence.  Frankly, that takes money just as much as it does personal effort.  Unfortunately, there is a lot of competition for charitable dollars, especially in our current, contracted economy.  Our dues help, of course and there are many folks who donate far above and beyond their annual dues and of course, those folks are deeply appreciated.  As we try to help educate friends and family about acoustic neuromas I suggest that we also try to do whatever we can, financially, to help the Acoustic Neuroma Association.  Its a relatively small organization (as you might have guessed) and uses donation income prudently.  The operation of these forums on the ANA website has to be paid for and our contributions help defray that expense and make the forums possible.

Thanks again for your input, Mike.  I hope others will consider giving whatever they can in the form of financial donations to ANA.  Its appreciated.  :)

Jim       
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #33 on: June 29, 2012, 10:10:37 pm »
Jim,

Thanks for giving me a great idea! I know of a way to effect a positive change! Since the Kiwanis Cub often considers giving money for charitable orgaizations that do good for others I'm sure that they would consider giving to our parent (ANA) organization. I'm going to mull this over and probably start an independant thread about it.

Nothing new to report as far as facial twitches or tinnitus or symptoms...

What a great idea, Jim! Thanks a lot!

This is an idea that flashes like a light bulb over my head!!

Mike

Chime in people what do you all think?
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

millie

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #34 on: July 01, 2012, 05:52:52 pm »
You are right, Mike-most people know nothing about benign tumors in the head until they get one.  And then, I think most folks are terrified. 
Thank God I found this forum.  Because I was so upset about my diagnosis, I e-mailed  the NYC  ENT who had seen me and analyzed my MRI, and   I asked him if there were support groups for people like me and he wrote back Sure!  ANAUSA.  So I googled around and found sorely needed respite. 
The other ENT  I saw made no mention of the ANA although he said I might speak with a neurosurgeon since I was so troubled by my diagnosis.  (He told me, this second ENT, that I had the luxury of time, it was only 1.2cm by .8 x.5) The neurosurgeon said if I were his wife, he would tell her to watch and wait. (He didn't mention ANA either.) Their matter of factness calmed me down, but symptoms may get worse, and when they do, we are alone or going about daily life and it's definitely different!  It can be very hard.
One way to publicize this condition  might  be to ask hospitals who advertise their stereotactic radiosurgery  in TV commercials  to attach a brief paragraph/voiceover with "Donate to the Acoutic Neuroma Association today!  End the  fear of tumor diagnosis!" or something like that.  The hospital could probably get a tax break too. Just a thought.
Hmmm. Have I paid my dues to the ANA?

It is what it is

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #35 on: July 01, 2012, 07:01:54 pm »
Congratulations on your positive journey and thanks for sharing it with all of us.  Prayers are still coming your way.

Karen F
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Jim Scott

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #36 on: July 02, 2012, 02:29:53 pm »
Millie ~

Thanks for the good ideas in your post (#34). 

The neurosurgeon I selected to perform my AN debulking has been a member of the ANA for decades.  This was a major factor in my decision and helped to validate my intuition that he was the right doctor for me - and I was correct.

Jim    
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #37 on: July 03, 2012, 02:20:45 pm »
Remarkable!

A person(works with me) who knows me from just before my procedure today commented on how remarkably well I am doing how much better I'm walking and how clear I am speaking and I thought this guy is just pulling one on me. Apparently, I was quite run down just before June 11th and am quite improved to everyone else!

Have a Happy Fourth of July for those with SSD, try not to get to close to those fireworks we have only one good ear remaining let's try to preserve our hearing for as long as possible everyone!  Stay Safe and Healthy!


Mike
 
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

It is what it is

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #38 on: July 03, 2012, 05:04:44 pm »
It sure can help getting feedback from others who witness the progress. Hurray!

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #39 on: July 04, 2012, 11:35:40 am »
Happily nothing to report!

Have a Safe and Healthy 4th of July as you watch the Fireworks today, please remember the original purpose of the day was to celebrate Freedom from England and from Taxes imposed on us without proper representation.

Let that motivate you this November!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

It is what it is

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #40 on: July 04, 2012, 11:38:48 am »
Happy 4th to all. Celebrating diversity in our ANs and in our treatment choices and in our great country. 
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #41 on: July 05, 2012, 10:48:16 am »
To all of my AN Friends<

Ah! The smell of gunpowder, the concussive sound of explosions, the brilliance of fireworks reflected on the Hudson, a baseball game played hard, an anthem sung clearly and loudly and a barbecue had together as a family with family friends over. Nothing beats it for a family get together! Tis but a memory now! A pleasant one!

Yet, there were other people having surgeries or preparing to undergo procedures for whom we still should pray! Hope you had fun you revelers, wherever you are on your individual journeys. Remember to encourage those on their individual quests to rid themselves of these things (that for some of us) continue to grow.

Happy healing all!

No symptoms yet!!!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #42 on: July 09, 2012, 11:06:18 am »
A Flurry of Activity this weekend,

Friday---After work A free Staten Island concert in Silver Lake Park Beatles Blast tribute bands played songs in competition ...
Saturday---a Mets game in Queens won against the Chicago Cubs 3-1
and Sunday---a NY Liberty WNBA franchise game (loss) and a motivating 1st annual wheelchair basketball game with specially constructed wheelchairs in which the players took tumbles in the chairs but got right back up and continued playing!

Even though, he rides dead in my head, I for once this weekend did not think of the trauma that I have been through this past 8 months!

I wish I could teach that to all of you, it is good to be pleasantly distracted!!!! Therapeutic even!!!


Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #43 on: July 13, 2012, 08:04:35 am »
Good Morning All,

 It's a busy time of the year this time of the year for us at Clove Lakes Health Care - it's NY State survey time! Survey just started yesterday I have no doubt that we will do well again this year as this our 45th year of operation.

I can't help feeling tired and exhausted from walking 13 floors on rounds as Executive Director.

 I trust a great deal in my coaching ability and I wonder if it's really the remnants of my AN that are kicking in or the fact that I have been at this job for so long that makes me tired so quickly. Oh well, I won't go too hard on myself.....

That coupled with the neckpain that chose to kick in just yesterday or is it the stress?

I hope that you are well each of you and that you each are well on your way to healing! or at least are choosing your own path be it GK or CK.

I hope those of you who are following this blog won't take offense if I am somewhat distracted(by the NYS survey) and don't post as frequently unless of course, I have any pain.

Thank you.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #44 on: July 17, 2012, 10:17:59 am »
To all,
 A string of early risings and late bedtimes (lately) has left me headachy, and reaching for the Advil! No symptoms to report so far.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

 


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