Waiting for the last day of watch and wait

[MDemisay]

Hi Everybody,

Here I am again waiting for the last day of Watch and Wait before starting Gamma Knife! My question is though, and this is a pointed one, at what point do I go back to watch and wait?

Is it right after the procedure? How long do I stay monitoring things, one year or five?

Any thoughts?

Mike

[Jim Scott]

Mike ~

I expect that your doctor will determine the frequency of future CT scans (since you cannot have MRIs). 

Jim

[MDemisay]

Everyone,
 
Ureka!!!I finally know when my last day of watch and wait is! It's June 10! Only problem is not worrying and having faith between then and now. But, thank God I have all of you in my corner. I know I picked right in terms of Doctor Sisti and his talented staff of the Gamma Knife machine at NY Presbytarian.

Thanks especially much to all who prayed I would make the right decision, taking everything into account, I did!

Mike

[pjb]

Everyone,
 
Ureka!!!I finally know when my last day of watch and wait is! It's June 10! Only problem is not worrying and having faith between then and now. But, thank God I have all of you in my corner. I know I picked right in terms of Doctor Sisti and his talented staff of the Gamma Knife machine at NY Presbytarian.

Thanks especially much to all who prayed I would make the right decision, taking everything into account, I did!

Mike

Any reason why you did not stay with Dr. Golfino. I read a Dr. Rush I believe is excellent with GK as well ??

[MDemisay]

pjb,

The reason I did not stay with Dr. Golfinos is because I followed my gut it led me back to Dr. Sisti and his self assured attitude. That and his hospital's reputation in this field. He has been in practice doing Gamma Knife for 20 years with Dr. Isaacson the radio-oncologist besides that I have a history with his hospital that extends back to 1974. When Dr. Jost Michelson did surgery and removed 3 Arterio Venous Malformations. Even further than that in 1970 I had a CVA and began treatment with Dr. Michelson.


Mike

[Suu]

Everyone,
 
Ureka!!!I finally know when my last day of watch and wait is! It's June 10! Only problem is not worrying and having faith between then and now. But, thank God I have all of you in my corner. I know I picked right in terms of Doctor Sisti and his talented staff of the Gamma Knife machine at NY Presbytarian.

Thanks especially much to all who prayed I would make the right decision, taking everything into account, I did!

Mike

I am soooooooo happy for you to finally have a firm date.  I'm not up with the technology of GK (although I've read a lot about it on this forum) but deep inside a lot of us I have a feeling that we all watch and wait and hope for the non-return no matter how much confidence our doctors have or what procedure we have.

Got your bag packed yet? 

Cheers,
Suu xxoo

[pjb]

pjb,

The reason I did not stay with Dr. Golfinos is because I followed my gut it led me back to Dr. Sisti and his self assured attitude. That and his hospital's reputation in this field. He has been in practice doing Gamma Knife for 20 years with Dr. Isaacson the radio-oncologist besides that I have a history with his hospital that extends back to 1974. When Dr. Jost Michelson did surgery and removed 3 Arterio Venous Malformations. Even further than that in 1970 I had a CVA and began treatment with Dr. Michelson.


Mike

Thank you I was just a little worried and concerned but was looking into Drs. Golfino and Roland to maybe one day do surgery and not radiation still a little concerned with radiation ??

Best Wishes

[james e]

"GUTS" are pretty important. I was being set up for treatment 2 years ago, and my GUTS kept telling me this was the wrong doctor. Like you, I followed my GUTS, found another doctor, and I am happy I did. There was probably nothing wrong with my first doctor, other than I felt he was being far too casual about my treatment...it was probably really me, but it was my treatment, and I need to feel comfortable with my decision.  I was looking for excellence. I found it. Glad you followed your GUTS! Good luck with your treatment.

James

[MDemisay]

hi, Folks,

As my last day of watch and wait approaches, I'm wondering, should I have a party to mark it in some special way?What is your opinion? How long do I wait before restarting watch and wait?

Just asking....Does anybody know for sure?

Mike

[Jim Scott]

hi, Folks,

As my last day of watch and wait approaches, I'm wondering, should I have a party to mark it in some special way?What is your opinion? How long do I wait before restarting watch and wait?

Just asking....Does anybody know for sure?

Not really because this is a decision based on personal preference and attitude. 

I would want a party after my radiation treatment or when I felt that my recovery now warranted a celebration.

Having a pre-radiation party has an overtone of impending doom ('the condemned man celebrated his last day of freedom') but that is simply my point of view and certainly not one that I assume every AN patient holds, pre-treatment/surgery.  If having a pre-radiation treatment party lifts your spirits and gives you confidence, by all means, have one - and enjoy yourself. 

Jim   

[MDemisay]

Just too let everyone know I have 12 more days before Gamma Day!

Who me, nervous? Just prayerful!

Mike

[millie]

Good luck!  I will be following your posts.  For some reason I thought Golfinos and Roland did other than surgical removal.  Not true?  Thanks.  Millie.

[MDemisay]

Millie,

At the time I had my surgery, Dr.Golfinos was the first doctor I went to at the time among 14 (summer of 2004) he opened with the good news is that it's the size of a golf ball  (3.1 cm) and "I feel that I could get it all, the bad news is that you'd have 60% facial function left and that your face would be partially paralyzed and also a 1% chance of death". I am in a family run nursing home my business is making new contacts and smiling unencumbered by handicap, after all, people trust me with their loved ones.

At the time, this was my first impression about the doctor all I had heard was that there was a possibility of death! I was very frightened needless to say. But that didn't stop me from getting a second opinion about Gamma Knife in early 2012.

Right now, I am comfortable with my decision and how I arrived at it.

Mike
 PS. I am aware that they have a Gamma Knife machine as well!

[pjb]

Millie,

At the time I had my surgery, Dr.Golfinos was the first doctor I went to at the time among 14 (summer of 2004) he opened with the good news is that it's the size of a golf ball  (3.1 cm) and "I feel that I could get it all, the bad news is that you'd have 60% facial function left and that your face would be partially paralyzed and also a 1% chance of death". I am in a family run nursing home my business is making new contacts and smiling unencumbered by handicap, after all, people trust me with their loved ones.

At the time, this was my first impression about the doctor all I had heard was that there was a possibility of death! I was very frightened needless to say. But that didn't stop me from getting a second opinion about Gamma Knife in early 2012.

Right now, I am comfortable with my decision and how I arrived at it.

Mike
 PS. I am aware that they have a Gamma Knife machine as well!

Hi, Mike I too am a little concerned about what Dr. Golfino said to me about the screws sticking out of my head and wondering if you tried Dr. Gutin he is under my insurance plan so that is why I might try him for another opinion and I have heard about him but not sure seeing I do not see that many posts about him? My neurologist keeps saying Dr. Sisti which I know he is good but if he does not accept my insurance that is a major concern.

Best Wishes,

[pjb]

"GUTS" are pretty important. I was being set up for treatment 2 years ago, and my GUTS kept telling me this was the wrong doctor. Like you, I followed my GUTS, found another doctor, and I am happy I did. There was probably nothing wrong with my first doctor, other than I felt he was being far too casual about my treatment...it was probably really me, but it was my treatment, and I need to feel comfortable with my decision.  I was looking for excellence. I found it. Glad you followed your GUTS! Good luck with your treatment.

James

Sorry I have trouble keeping up with the posts and just saw this one from James....Your right your gut feeling is so important as I now know I should have went with my gut and postponed surgery and  to meet with other doctors but my insurance had a major concern in my decision and that was wrong I should have pursued it in a different way with this a complex surgery and not many are qualified or willing to do it and I being in the Healthcare field and fighting for our patients did not fight for myself but hearing that you have a brain tumor took over the gut side of my decision and went with someone who would work with my insurance!!! So if I can help anyone I would say take it slow research research and more research along with finding a GREAT team of doctors no matter what treatment you choose and stand up for yourself with your insurance company they have clauses in fine print they will cover it you just have to be willing to fight.

Best Wishes,