Still working on making right treatment choice

[annac]

Hello everyone, It's been over a month since my last post and wanted to share my current status regarding what I'm going to do about this pesky tumor. First of all I'm not freaked out anymore but rather in a very calm state. Educating myself has in part led me to this state along with reading many posts here, speaking with others that have gone through successful surgery and most importantly placing my complete faith in God so he can lead me in making the right treatment choice.

I've taken advantage of this slow growing tumor and decided to get as many consultations with highly regarded doctors. Since September I have had consultations with Dr's. Golfino, Roland, Post, Bederson in NYC and phone consultations with Dr's Brackmann, Friedman & Schwartz from HEI. Translab surgery was the majority treatment opinion although Dr. Schwartz said radiation could be an option. With that in mind I consulted with Dr. Andrews, at Jefferson Medical in Philly. He too said fractionated radiation would be option even though the tumor was previously radiated in 2000. Wow, could this be really true? I'd take radiation any day over surgery but was it really the best long term treatment option?

Even though Dr. Andrews recommended radiation I wanted my case reviewed by their tumor board which is made up of neurosurgeons that not only perform surgery but are experts in fractionated radio surgery. I also have an appointment with Columbia University Neurology Department for the same kind of review.

Right now if I had to choose a neurosurgeon it would be Dr. Schwartz at HEI, even though the traveling and possible post-op complications  out in California makes me a bit nervous.

As a side note for others who are considering consultations in NYC. Be advised that Dr. Sisti at Columbia does NOT see patients that have previously been treated by any other doctor. Yes, believe it or not, his office cancelled my appointment when they found out I had FRS nine years ago in 2000 with another doctor. Additionally be forewarned about his appointment secretary, Mary. My Mother always told me "if there's nothing nice to say about someone then don't say anything at all".

[opp2]

My Mom used to tell me that too annac. I use it on people who are rude to me a lot. Of course being a police officer, people are rude to me a lot.  rarely are folks happy to see me coming along.

Best of luck with your decisions. Tireless research has helped to keep me sane to this point.

Nikki

[tenai98]

hijack
Nikki...being an diriving instructor, i am amazed how kids panic when they see a cruiser...i ask them Why are you fretting when we are doing nothing wrong...cops are poeple just like me and u...kinda put them at ease them...
JO

[DR]

Hello everyone, It's been over a month since my last post and wanted to share my current status regarding what I'm going to do about this pesky tumor. First of all I'm not freaked out anymore but rather in a very calm state. Educating myself has in part led me to this state along with reading many posts here, speaking with others that have gone through successful surgery and most importantly placing my complete faith in God so he can lead me in making the right treatment choice.

Thanks for providing an update.  Its good to hear that you have gotten past the "Oh my GOD!!!" state and can now focus on things with a clear mind.

- Dennis

[Jim Scott]

Anna ~

Thanks for a very encouraging post.  You appear to have a firm grasp on your AN situation and are proceeding methodically to seek out the best treatment and doctor for you, which is what we advise all newly-diagnosed AN to do.  You're practically a role mode for how to proceed after the initial shock of the AN diagnosis.  Too bad about the elitist doctor Sisti and his difficult appointments secretary.  Obviously a doctor with too many patients so he can afford to hyper-selective - and his secretary reflects his narcissism.  It happens with doctors and their staffs.  Fortunately, you have many other options.  I hope this works out well - and I believe that it will.  Let us know when you've concluded your research, picked a procedure, doctor and facility.  Thanks.

Jim

[Tricia (horsekayak)]

In reference to arrogant doctor and secretary:  my wish for all people who are rude and intentionally mean and unhelpful is that they will not  get into the gates of Heaven (if they even make it that far) because someone equally rude and intentionally unhelpful is on the other side, treating them the same way they treated others!!!

I know i should be nice, but this story really hit a nerve.  I've tried so hard to be positive about all my AN adventures with doctors and doctors non-service staff, but there have definitely been some individuals who were put into my life recently just to make me appreciate all the wonderful nice helpful ones that are also out there.  (note:  the people at Shands Hospital are some of the nice ones...they helped me  appreciate how nice busy pros can be....they are great, very busy, but funny and compassionate!)

So this is  the only way i can look at things like that right now:  the bad and the ugly people (and experiences) help me make my decisions easier.   They help me eliminate a lot of things.

Even another way of looking at this:   some rude and mean people must really be hurting inside at some level...and all i can do right now is send sympathy to them , and then take care of me by takiing myself somewhere else.  I try not to give them any more energy/attention, and remind myself that we all have options, and that I can choose NOT to be around such people.

Hope this helps...i do feel with you on having some unpleasant experiences...you dont really need that at anytime, but especially at a time when you're researching some life-changing decisions to be made


tricia (horsekayak)

[Bomberman]

Wanted to say something about Dr. Sisti's selection process because people here were mentioning that he was rejecting certain patients. I believe he excludes patients because he works on a particular algorithm he has and doesn't want data that doesn't fit his algorithm to skew his results.

[mcrue]

After 7 years 's he's still doing this?

[Faithbeyondfear]

I have a 2.9vs 2.4 cm AN with 100%hearing in both ears, PLEASE go see Dr. Chandranath Sen at NYU. He is PHENOMENAL. He has 40years experience and is the head of Scull Base Surgery at NYU. He is the only Dr who took my hearing into consideration. All the other Dr's (including the head of neurosurgery at Cornell) told me that my only option was the Translabarynth approach. Dr. Sen actually prefers the suboccipital approach. He is the best of the best. I had to wait 3 weeks for my appt and now am awaiting my surgery on Jan 30th. People fly from all over the world to see him so expect a wait. I am beyond blessed to have found this earth angel. He is brilliant, kind and has mastered his craft several times over. The best of luck to you!