Author Topic: My Personal Gamma Knife Treatment Journal started June 10, 2012  (Read 51425 times)

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #120 on: June 12, 2013, 12:32:40 pm »
Dear All,

Well it went well and I was even able to conduct a lively business meeting afterwards without being too tired! Thanks for the prayers everybody! Now on to Dr. Sisti's appointment. Good anniversary after all!

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

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #121 on: July 08, 2013, 05:29:47 am »
Dear All,

Today I have an appointment scheduled with my neurologist Dr. Kirk Roberts. Hopefully, he will review my medication regimen and prescribe facial exercise regimens I could undertake as I pray for the cellular death of the ever present Dead Irv (my favorite but silent ride along partner).

I have yet to schedule an appointment with Dr. Sisti, I hope I have not waited to long, but probably, I have. Wish me luck with the secretarial powers that be!

Mike

Ps. praying hard for positive news!
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

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #122 on: July 08, 2013, 08:42:43 am »
Mike ~

Congratulations on surmounting your fears and getting the necessary MRI scan.   Please make the appointment with Dr. Sisti, ASAP.  Not knowing the MRI result is not only stressful for you but really works against your best interests.  You need to know where you stand, as it were.  I'm confident the scan results will be a great stress-reliever for you so please don't procrastinate.  Oh, and be sure to let us know the 'verdict' for Irv.  Thanks.

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

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #123 on: July 09, 2013, 10:59:28 am »
Dear All,

Well I brought the results of my reports and CT scans with/without contrast in and we found out something (the incredible shrinking tumor DEAD IRV) that had eluded us and had in fact appeared to the radiologists at  Verrazano Radiology not to have changed demonstrably much when comparing the CT scans of October 2011 with June 11, 2013.
 On comparing the 3 testing periods together however, one detects a totally different story.( I had  gone to NY Presbyterian Hospital to have the Gamma Knife procedure on June 11, 2012 and had the tumor targeted there prior to undergoing the procedure (which was relatively painless).

I should point out however, that prior to the October 2011 IRV was smaller and Dr. Sisti decided that we both should attempt to curtail its growth.

Comparisons show the following:

1. October 2011 1.8 X 1.3 cm Verrazano Radiology (Staten Island)

2. June 11, 2012 1.9 X 2.7cm NY Presbyterian (pretargeting levels)

3. June 11,2013 1.8 X 1.3cm  Verrazano Radiology (Staten Island)

This without my neurosurgeons saying it appears to me to be quite a signifigant change even though it only appears to have shrunk back to October 2011 levels, can I expect more? It is difficult to say. Only time will tell! I will find out Dr. Sisti's opinion on July 22nd when I meet with him.

 At this point,I am very greatly relieved, is all I can say! During the past two months the facial twitchyness has diminished quite a bit. In that at the height of it it used to go on above my left eyelid, underneath my left eye, above my left side of my mouth, beneath my left side of my mouth all at once. Now it has calmed down to include beneath my left eye, but even that is only at times. Now all I can complain about is the relaxed way the left side of my face appears when I smile so in light of that I don't smile as often. Which at first was difficult because of my cheerful personality! Oh well, I'm smiling inside!

Thank you everybody for your well wishes and prayers!


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!

robinb

  • Sr. Member
  • ****
  • Posts: 259
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #124 on: July 09, 2013, 11:14:58 am »
Mike-

I guess that is good news, congrats. Glad the twitching  has improved.

Curious as to why you are having CT scans instead of MRI?
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #125 on: July 09, 2013, 02:16:13 pm »
Mike ~

Thanks for the update and congratulations on your 'incredible shrinking IRV'.  As you know, the goal of radiation is to halt the growth of the tumor.  As my radiation oncologist (the esteemed Dr. Jonathan Haas, now of Mineola, N.Y.) put it: "we want to destroy it's DNA so it can't grow"

Necrosis is the real goal, shrinkage is a bonus of sorts.  However, that your radiated AN has reduced in size within a year is a very positive sign but my doctor told me that my debulked and radiated AN will likely never completely disappear but, like a dead leaf clinging to a tree, it will be of no consequence.  I would expect 'IRV' to end up about the same.  Especially the 'no consequence' part.   :)

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

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #126 on: July 09, 2013, 04:18:19 pm »
Thanks Jim for your unwavering support, it means so much......Robin I cannot have an MRI with 70  (in 1974) clips of metal installed on top my cranium. You know what happens to metal when it is magnetized?

It would make any operation on an AN meaningless.

 At the time I had 3 brain bleeds at once Dr. Michelson did a life saving 12 hour operation with metallic clips because nonmetallic clips weren't yet available.

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

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #127 on: July 22, 2013, 05:00:14 pm »
Everybody!

Great news to report! I just returned from a meeting with Dr. Sisti with my wife. Dr. Sisti has declared 'Irv' to be  'wimpy' if not totally dead. Even better news the twitchiness should subside as the tumor shrinks more and I should get the smile back to where it was before! He gave me a prescription for a follow up CT scan in a year. He said the twitchiness has gone down considerably as I reported to him. In a year he should be really DEAD.

He also added that Dr. Konziulka the doctor (who I consulted with) who went to NYU in November 3 days before Sandy struck (totally wiping out their machine) has been practicing at NY Presbyterian 1 day a week! Can you beat that! He practices with Dr. Golfinos (who I consulted with as well).


I am really pleased today!

Mike

Thank you all for praying!
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

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #128 on: July 23, 2013, 12:59:03 pm »
Congratulations, Mike!   ;D

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.

robinb

  • Sr. Member
  • ****
  • Posts: 259
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #129 on: July 23, 2013, 06:56:31 pm »
Mike-

So glad about your great news!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Bonnie B.

  • Jr. Member
  • **
  • Posts: 87
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #130 on: July 24, 2013, 01:44:46 pm »
Great news Mike.  I am 16 months post gamma knife and have developed the left sided twitching on left side of mouth, nose and eye.  I can't wait for more shrinkage so it will leave.  However, so many worse things could have happened so, I can't really complain.   :)
1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #131 on: October 07, 2013, 03:54:25 pm »
Dear Everybody,

Just checking in facial twichiness has for the most part subsided.....Thank God! Since June my attitude has improved with "wimpy Irv" not yet dead but as good as!

I should be grateful! I have shaved off my beard(for the summer) and I wanted Dr. Sisti to see my partial facial droop. The good news it's not as bad as it was but I still have the upper left lip quiver every once in a while! The good news is that I look 20 years younger!

Some changes in my family have made me feel blue though, my Dad's health is waning and I am trying to suggest help for him but am getting resistance from my Mom (of all people).

Hoping that you are all in good health wherever you are in this fantastic shared journey of ours, and if you are on the fence here's hoping that you can make a decision soon.

Your friend,

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

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #132 on: November 22, 2013, 02:46:31 pm »
Dear Everybody,

I just wanted to wish you all a steady recovery (wherever you individually are in this shared journey of ours) and a Happy Thanksgiving! One thing I am sure grateful for is to have this forum where I can express myself and be understood by all of my AN friends. I also am thankful for the decreased symptoms I am experiencing lately.

Remember the less fortunate this Thanksgiving and find someway to pay it forward.

Peace,

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

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: My Personal Gamma Knife Treatment Journal started June 10, 2012
« Reply #133 on: November 29, 2013, 03:02:38 pm »
All the good food leftovers! When you are feeling so warm and toasty that you don't want to leave but you realize that you have to go home! Haven't been a guest at somebody elses house in a long while. Hope all my ANA friends enjoyed their families.

Peace,

Mike

We didn't talk about acoustic neuroma at all. Very refreshing for a change. Missing my grandmother and her laugh :'(
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!

 


anything
anything