ANA Discussion Forum
Useful Information => Physicians => Topic started by: v357139 on July 10, 2013, 06:31:34 pm
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I saw Roland/Golfinos, Sisti, Selesnick/Gutin, and Choe/Shrivastava. Somehow I am still not comfortable. Probably just me. Does anyone know of any other good docs in NYC area, or CT, or anywhere else in the tri state area?
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If you are considering Gamma Knife, definitely see Fr. Kondziolka at NYU.
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No, thanks. I am still looking microsurgery.
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You probable have over 150 years of AN experience in that list. Dr. Roland and Dr. Golfinos at NYU were my surgeons. My son's business associate was operated by Dr. Sisti, she had good results. If you're looking for a surgeon that's going to make you feel all warm and fuzzy - well that isn't going to happen. So I think it is you.
Best advice - learn as much as you can, and make the best decision for you.
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Thanks. I am trying. Having a hard time of it.
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If you are still looking, check out Dr. Kalmon Post at Mount Sinai Hospital (NYC) with Dr. Smouha. I had my AN removed (3.3 cm) retrosigmoid last May 30, 2013 and he was able to remove it 100%. No damage on my facial nerve (main concern) and no balance issue. Hearing was not saved. My surgery took 10 hrs and I was able to walk the following day. I was discharged June 1 . My only issue was I had headache when I was weaned off steroid(for brain swelling) so he put me back on tapered dosage for another week. No more headache after that.
I highly recommend them.
Good luck
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Thanks. Dr Post is out of network for me. I tried to get Bederson, my insurance would not budge. Glad you had a good outcome.
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I was looking for warm and fuzzy too. I went to many of the doctors you have seen. I finally said my prayers, made a decision, and believed in whom I chose. It is a very difficult situation, but you will get through this. Stay strong.
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Thanks Mil. Said lots of prayers, wrote things down, talked to people I trust. Nothing seems to work. One day I decide on one, then the next day I change my mind. Can't seem to make that final choice. Very frustrating and difficult. Any suggestions?
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Is it possible for you to leave your "mind" out of the equation and listen to your intuition? I went through a similar process and kept changing my mind. And then I just knew which choice was the right one for me. It was an intuitive knowing. I found that, for me, praying (or meditating) is the first step and the I have to quiet my mind to listen for the answer. I hope you hear your answer and find peace.
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Is it possible for you to leave your "mind" out of the equation and listen to your intuition? I went through a similar process and kept changing my mind. And then I just knew which choice was the right one for me. It was an intuitive knowing. I found that, for me, praying (or meditating) is the first step and the I have to quiet my mind to listen for the answer. I hope you hear your answer and find peace.
Praying did not seem to help. And my mind needs a rest for sure. Maybe I will try meditation. What is the best way to meditate on this?
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I am not certain I would meditate "on this" but try your best to clear your mind in whatever way works. Not easy because our minds want to be in control. Focus, if possible, on a color or a peaceful scene or chant a sound or phrase. If thoughts about what to do come up, see if you can dissolve them and go back to the visualizing or chanting. My belief is that once you quiet the chatter and noise of thinking you will be open to God's answer about what to do.
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V357... It appears your problem is decisional conflict which arises from risks and threats of loss. Seeing more and more expert doctors will not resolve your situation. Have you thought about counseling to give yourself some insight into
your thought processes?
Treatment is a difficult decision, but not an impossible one. Many people here in this forum found doctors they were comfortable with and went with whatever method and tools that doctor used and was best at. I know that's what I did. There is no "best" doctor for anything, there are many very good, expert, doctors for everything. No one can micro manage every possible outcome.
Any adverse outcomes from treatment are often temporary, or can be addressed medically, or we just adapt to them and get on with our lives. Good luck. By the way, you may want to look up decisional conflict.
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Erie - I think you are right on the mark. I will look it up. The other word is "fear of choosing wrong." Maybe I will also try a therapist.
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V357139,
When I was making my decision about what kind of treatment to have and where, part of me longed for the days when doctors made those kinds of decisions for you. It sounds as if you have done more than your due diligence, and you should take comfort in that. As others have said, you can't control every outcome or variable. For all any of us knows, next year someone will have developed yet another way to treat these darned tumors. The truth is, there is no right or wrong decision to make. Whatever decision you make, it will be the right decision, based on your individual circumstances and the information you have available. Good luck to you.
staypoz
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The best advise on this forum in my opinion has always been: Choose experience, experience, experience. Doctors who have done the most procedures in any of the treatment options seem to have the best outcomes. Fear of choosing wrong, and you will not be able to make any decision.
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Staypoz,
Thank you for the good words. I have done so much (too much) due diligence, I have found some negatives on all these top docs. How do you get over the fear of choosing wrong?
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Actually, I am sad to say, I think I just have fear of going forward at all. How do you get the courage?
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Actually, I am sad to say, I think I just have fear of going forward at all. How do you get the courage?
In 1894, Mark Twain wrote: "Courage is resistance to fear, mastery of fear - not absence of fear".
Many years later, actor John Wayne put it another way: "Courage is being scared to death... and saddling up anyway".
What these aphorisms are saying is that there is always some risk in our decisions but the necessity of taking the risk must surmount our fears. When choosing a doctor to perform AN surgery, the risk is intensified. That means our courage to make a decision and trust that decision must be intensified. Outside of death and taxes, there are no guarantees in life and certainly no guarantees in AN surgery outcomes. However, many AN surgery patients do just fine. I'm one of them. I depended on my spiritual faith and a very experienced neurosurgeon to get me through the surgery (and later radiation). You may wish to use other means but the surgery must be done at some point and procrastination is not the AN patient's friend.
You will be in the thoughts and prayers of many of us as you move toward making the decision you must make. Please let us know when that happens.
Thanks.
Jim
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Making no decision is actually making a decision to do nothing, which can have serious repercussions when a tumor is growing near your brain. There are no guarantees about anything in life, except, as Jim stated "death and taxes". For me, fear is counterproductive and tends to lead to negative consequences. I hope you are able to transcend your fear and trust the Universe that whatever choice you make regarding a surgeon will have the best possible outcome - the outcome that you are meant to have.
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In 1894, Mark Twain wrote: "Courage is resistance to fear, mastery of fear - not absence of fear".
Many years later, actor John Wayne put it another way: "Courage is being scared to death... and saddling up anyway".
What these aphorisms are saying is that there is always some risk in our decisions but the necessity of taking the risk must surmount our fears. When choosing a doctor to perform AN surgery, the risk is intensified. That means our courage to make a decision and trust that decision must be intensified. Outside of death and taxes, there are no guarantees in life and certainly no guarantees in AN surgery outcomes. However, many AN surgery patients do just fine. I'm one of them. I depended on my spiritual faith and a very experienced neurosurgeon to get me through the surgery (and later radiation). You may wish to use other means but the surgery must be done at some point and procrastination is not the AN patient's friend.
You will be in the thoughts and prayers of many of us as you move toward making the decision you must make. Please let us know when that happens.
These are great words. I will read them over and over. I have to admit I am struggling. Thanks so much.
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Making no decision is actually making a decision to do nothing, which can have serious repercussions when a tumor is growing near your brain. There are no guarantees about anything in life, except, as Jim stated "death and taxes". For me, fear is counterproductive and tends to lead to negative consequences. I hope you are able to transcend your fear and trust the Universe that whatever choice you make regarding a surgeon will have the best possible outcome - the outcome that you are meant to have.
Yes you are right. I can't wait forever. Also, I was previously diagnosed with obsession and anxiety/depression, which does not help. I will read this one over and over also.
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Terisandler - I saw you also have a meningioma now. Do you think that came from the CK?
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Actually, I am sad to say, I think I just have fear of going forward at all. How do you get the courage?
In 1894, Mark Twain wrote: "Courage is resistance to fear, mastery of fear - not absence of fear".
Many years later, actor John Wayne put it another way: "Courage is being scared to death... and saddling up anyway".
Jim
Thanks Jim you wrote very well. I finally decided and surgery is at House next week Nov 20 with Slattery and Schwartz.
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Making no decision is actually making a decision to do nothing, which can have serious repercussions when a tumor is growing near your brain. There are no guarantees about anything in life, except, as Jim stated "death and taxes". For me, fear is counterproductive and tends to lead to negative consequences. I hope you are able to transcend your fear and trust the Universe that whatever choice you make regarding a surgeon will have the best possible outcome - the outcome that you are meant to have.
Thanks Terri. Finally decided and its Nov 20 House with Schwartz and Slattery.
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The best advise on this forum in my opinion has always been: Choose experience, experience, experience. Doctors who have done the most procedures in any of the treatment options seem to have the best outcomes. Fear of choosing wrong, and you will not be able to make any decision.
Thanks Rupert. I had much fear. But I chose experience and will be House on Nov 20 with Slattery and Schwartz.
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V357... It appears your problem is decisional conflict which arises from risks and threats of loss. Seeing more and more expert doctors will not resolve your situation. Have you thought about counseling to give yourself some insight into
your thought processes?
Treatment is a difficult decision, but not an impossible one. Many people here in this forum found doctors they were comfortable with and went with whatever method and tools that doctor used and was best at. I know that's what I did. There is no "best" doctor for anything, there are many very good, expert, doctors for everything. No one can micro manage every possible outcome.
Any adverse outcomes from treatment are often temporary, or can be addressed medically, or we just adapt to them and get on with our lives. Good luck. By the way, you may want to look up decisional conflict.
Thanks Erie. You had good advice for me several times. I am finally having surgery at House on Nov 20 with Schwartz and Slattery. Thanks so much for all your words and perspective.
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v357, You are welcome. I am glad you have made your decision and will soon have the treatment behind you. I will be interested to hear how things go from here on. Good luck.
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Surgery was Nov 20 at House. No facial issues, no headaches. Got out 99.5%. Temporary balance issues getting better each day. Doing well. Thank God, and all of you.
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Surgery was Nov 20 at House. No facial issues, no headaches. Got out 99.5%. Temporary balance issues getting better each day. Doing well. Thank God, and all of you.
Congratulations! ;D I'm delighted to have you join those of us who experienced good outcomes to our AN surgery. May you have a rapid recovery.
Jim
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Thanks again Jim to you for your wise and helpful words. And to all the great people on this site who have been so helpful!!
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I have been rereading your posts and so appreciate the difficulty of deciding…but once you make the decision, it's half over! Then we get on with our lives. I am so happy your surgery went well. You must be on the West coast having gone to House…if I lived in California, I would have done the same.
May you have a strong recovery. Merry Christmas. Mil
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Thanks Mil I am in Westchester County. I made the trip, and am glad I did!!!!!!