ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: allegro17 on February 24, 2009, 10:12:34 am
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But I just couldn't do it! I feel like such a weenie. Was on the phone with the scheduler at and she gave me a date - then I said I had to think about it.
I am not sure if this means that surgery is not the right decision for me, or if this is just really hard.
Did anyone else deal with this?
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But I just couldn't do it! I feel like such a weenie. Was on the phone with the scheduler at and she gave me a date - then I said I had to think about it.
I am not sure if this means that surgery is not the right decision for me, or if this is just really hard.
Did anyone else deal with this?
Hi Laura,
It's not often I get to post for the benefit of others because most are looking for answers about post-recovery, and my surgery is still a week away. Suffice to say that I went through all the things you are going through, except for the possibility of NF2 that you brought up in another post. I am 45, and fit the "normal" mold of when these AN's manifest themselves in the 1 of 100,000 people that discover them.
Early on, I was leaning strongly toward radiation (cyberknife) because of the greater potential for saving my hearing and of course the prospect of being able to return to work and "normal" life immediately following treatment. For me, it was the fear of the 2 year journey of ups and downs following radiation that ultimately lead me to decide on surgery. Not everyone has issues with radiation, but I am the type of person that would worry enough to cause myself symptoms even when nothing was really going wrong :).
Once I made the decision to have surgery, I found myself with lots of excuses for delaying it. First, there was a cruise in January to attend a niece's wedding. Then there was work, looking over the schedule to see when it would have the least impact on others at the office. My boss only asked for two things...1) That I try to be back for our busy season (starts in June), and 2) That I not worry about the schedule, but take care of my health as a first priority.
I finally boxed myself in by working with the scheduler at work to pick a low impact 8 week period. I wonder, though, if I had not done that, if I would have scheduled the surgery yet :). My symptoms haven't changed much since my original diagnosis in late September of 2008, so it was easy for me to put it off. Partial hearing loss, and loud constant tinnitus have been with me since about August of 2008.
I can honestly tell you now, that finally scheduling the surgery has brought some relief to me! Don't get me wrong, I am still nervous about the upcoming surgery, but it was a great relief to know that the thing growing inside my head has finally received its eviction notice, and it now has only 9 days left to vacate :).
Assuming you are comfortable with your treatment decision, I suggest you go ahead and schedule the procedure, and see how you feel after that. You can always change your mind or reschedule if you find you are not comfortable with the decision.
Ernie
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Great advice, Ernie!
K
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Jump in Laura! The water in FINE !!! ;D ;D ;D
Steve
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Laura:
Reading about the angst so many AN patients go through choosing a treatment, then setting a firm date, I'm almost glad that by the time my AN was discovered, there was no time to waste and surgery was my only option. I was diagnosed in mid-May (2006), my retrosigmoid surgery was scheduled for June 1st, then postponed (not by my choice) to June 7th, when it finally took place. Suffice it to say that it all worked out, just as I trust yours will.
I can understand how difficult this decision is and frankly, unless you're totally committed to a specific procedure and the doctor to perform it, it may be better to wait a bit. Use the time to be honest with yourself and try to decide on a both a procedure and a convenient date. Unless you're mentally and emotionally committed to your procedure and physician, you'll continue to be uneasy and indecisive. Knowing that your AN has to be addressed, you'll need to look inside yourself, as it were, decide what you want to do, accept whatever risks are involved, and then, come to a decision. We often say that this time of choosing is the hardest part of this experience - and I believe that. Here's hoping you can find the strength to make the decision you have to make - and do so with confidence.
Jim
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Okay, Laura, I'm going to offer you a different perspective - keep in mind here that I almost failed psychology in college, though :D
I had the choice of surgery and radiation and once I made my decision (surgery) I booked it as soon as possible. I was confident in my decision, I was confident in my doctors, and I wanted to get on with my life. In addition, I wanted to be on a plane to Denver by mid-August (surgery was end of May) and nothing was going to stop me!
So, IMO - and keep in mind here it's only my opinion - your hesitancy just might mean something. It's true we are all different individuals and we all have different thoughts, but I think it's worth stepping back and re-examining your decision before you book a date.
Changing your mind prior to your treatment is easy enough, obviously once you have treatment you can't go backwards. I personally wouldn't have wanted to second-guess myself post op.
Just my two cents, for what it's worth,
Jan
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Is surgery right for you? Thats the million dollar question. I am 31 and was dx 2 months shy of my 30th birhday. I was scared. I looked and weighed my options. I had CK done January 2008. I am 1 year post CK now and I am doing ok. My last MRI in December show slight shrinkage....
Not trying to push you in a direction you dont feel comfortable with. Your AN isnt very big so you have time. Take your time and go with your gut. ;)
Mindy
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Hi,
I could've written your post! I've have been very "lucky" since I already had to schedule two AN surgeries - of course I'm being sarcastic!!
First surgery 2001 - In an attempt to calm my nerves the scheduling assistant told me she would only "pencil" in my time. She knew how anxious I was about committing to a date.... Needless to say the date came and I was at the hospital.
Translab 4 weeks ago - Committed myself to scheduling my appointment after Thanksgiving after putting it off for many months. Did schedule the surgery but I got off and cried and cried!!!! Called everyone I knew and continued to cry........... Very upsetting but I came to terms with it and never looked back.
I knew surgery was the only option for me but I still found it extremely difficult actually setting a date. Rest assured your not alone!!!
Make the appointment and you will get use to the idea of having a date......
Jen
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Laura:
It seems like it would be a great benefit to feel that you are making the very best decision that you can for yourself, whether it's surgery or CK. There are so many variables, so many different outcomes, that it feels crazy. I know that once I had done all the research, talked to you folks on line, and talked with the surgeon, I came to the point of surity that I was choosing the very best thing I could for myself and that I would not let myself second-guess myself later. It just kind of clicked into place in my mind.
Then, it seems, like the thought of surgery is a lot less scary. I'm scheduled next week at SBI, had my pre-op physical today and things are starting to feel pretty real, but I have to say I feel confident that I can handle it and I'm not anxious.
So good luck to you, and if you have the luxury of time, research until your decision feels right.
Steph
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I like many others put off surgery for one reason or another. What worked for me was to find a time when I wouldn't be so busy and in my case prior to the holidays so I could enjoy my family post op. I am glad I did, insurance had a lot to do with my date so I am glad in a sense that I was boxed in... It's sorta like the first day at school. We know it's coming and we are all scared but the nice thing is that once you get there - there is a lot of us that made the same trip and we are here waiting and cheering you on. Take Care...
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Hi everyone,
Thanks for the great advice. I am now actively trying to get my surgery scheduled!! Bumping into some problems here and there but those will hopefully be ironed out soon. I wavered back and forth for so long with treatemtn options that it felt weird to finally be committing to something I think, but once I had a few days to get used to it and give my decision a trial run, well, now I am so anxious to get the details worked out and get it DONE.
I think a big part of this for me is also choosing a doctor. I met so many that I liked, and am trying to decide between two right now. I like each for diifferent reasons, which makes it hard to choose and committ. I think my gut is leaning me toward one, so that's why I am trying to get an appt. there and see how I feel once it's nailed down.
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Go with your gut. It's worked great for a lot of us.
Good luck!
Jan
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Laura,
Do you mind sharing which surgeons you like? I'm curious where your research ended up at...
Congratulations on making an important decision regarding your AN.
Regards,
Brian
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allegro:
Since choosing the Dr. is the hard part for you, why not talk to the two candidates again.
Once I had my date scheduled and decided on my treatment, I felt so relieved. You're almost past one of the more difficult parts of this.
Good luck to you.
Syl
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Sure, I guess I'll spill the beans :)
I am looking into two pretty different routes. One is going to NY, the other is going to LA at SBI.
So, really my decision now is based on A) Goint the least invasive route or B) Going the "traditional" route.
I met with three teams of doctors in NY and liked all of them, but I think Dr. Post is who I would choose there to do my surgery. I liked his overall philosophy and approach and felt confident with him.
However as I started to consider surgery again, I began to do a lot more research on SBI. I really feel that doing this surgery in as minimally invasive a way as possible fits well with my personality and lifestyle, and like that there have been so many people here that have had positive experiences with him.
So, that's where I am at. I think both of these guys have had good results overall, but I just want to feel confident more than anything that I am putting my head in the best hands possible.
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Thanks for sharing! Others can use your thoughts and methodology in their own quest for answers to the treatment / doctor question. As has been said before many time, treatment choice is very personal and none of us would presume to make that decision for you or anyone else. We can only lead by example and tell you and others why we made the choice that we did.
Personally, I think that either way you go, you'd be in good hands. As young and active as you are, then I would presume that you would make a fantastic recover no matter which way you go.
Happy hunting!
Regards,
Brian
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Go with your gut. It's worked great for a lot of us.
Good luck!
Jan
don't tell Jan that I'm agreeing with her... I never put it in writing.... but, in this case.... I agr...I agre.... I agree with Jan! :o (yes, Jan.. there it is... in writing!) A gut won't steer you wrong... maybe sit back for a day or so.... let it all soak in (mentally, emotionally, etc).... and go with your gut.
I can share that once you finally decide... you will honestly feel the monkey off your back, a possible renewed energy of... "well, I am ready to rock now that I have come to my decision..."... many will attest to it... incl. myself.
You will know in your soul of souls which will work best for you.... you have time to sit back to listen to your gut.... but go with it....
Good luck! Hang tough!
Phyl
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Hi,
I noticed that you met with 3 teams of doctors in NY. Did you happen to meet with Dr. Roland & Dr. Golfinos? They performed my surgery 4 weeks ago...
I also met with Dr. Kalmon Post. He is a very qualified doctor!
Just curious...........
Jen
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Yup, I sure did!
Liked them a lot. Pm'd you :)