General Category > AN Issues

After almost 10 years since first diagnosis I feel the need to share

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Natalie29:
Hi everyone,

First of all, thank you all for this amazing forum! I've been silently reading here the past couple of months, and found the information here very helpful.
I am writing just because I feel the need to share, for the first time to others but family and friends.
I was diagnosed with AN almost 10 years ago when I was 19 years old.
At 21 I had a surgery to remove my 1.2 cm AN, at the time, by a retrosigmoid approach. I wish I had researched my options better, but what does a 20 year old me knew at that time?!
Good news after surgery: hearing is pretty fine and only minor facial weakness.
Bad news: long long months of recovery and a 0.5cm leftover observed in an MRI 3 months post surgery.
More bad news: during the years the leftover grew just a little bit from scan to scan.
2016 MRI: 1.5cm, the neurosurgeon who operated back then recommends another surgery.
For the first time I realized that a 0.5cm leftover is huge!
For the first time, despite been somewhat related to the research field the past four years, I started to research my own AN, reading stories, reading papers, reading about doctors, about outcomes and treatments.
I understood that something should be done, but my intuition told me not to do the same surgery all over again. I've seen some doctors and consulted with some more over the phone.
I am now in the process of trying to get my insurance to allow me treatment abroad (I'm not from the States).
I'm pretty sure I've set up my mind on surgeons and on a place for the second surgery, and hopefully will sceduale a date soon.
I'm reading this post and I feel as if it is not emotional enough, because deep inside I am terrified to go through it all over again.

Thank you all for reading!

ANSydney:
Natalie, have you considered radiosurgery, say Gamma Knife?

ccooper:
I can't imaging going through this as a 19-21 year old. I've seen posts in here of younger kids and it's heartbreaking but I always remind myself, life goes on after this procedure, and for many other illnesses, that's not the case. I had a 3 CM removed February of this year and two months later they informed me they left behind a 1 CM portion! That rapidly grew and had to come out immediately. So I had my second surgery exactly five months later, only this time with a different (better!) doctor. Long story short, you know what you are in for so it's a bit easier to tackle it all. I had already lost hearing and recovered from loss of balance so I didn't have to go through that again. They fixed a few things that had been done poorly the first surgery so I actually came out better!! Not what I expected but I'm grateful I had the second one. I actually feel a lot better. So if you don't do radiation, get in, get it done, recover. Maybe they've made some good advancements since your first surgery and it won't be that difficult for you at all. Sending positive thoughts your way.

Natalie29:
Hi,

Thank you for sharing your story.
Wow two surgeries, one right after the other, I can't even imagine...
Glad to hear you are doing well! :)
I did choose a high volume clinic this time after researching and reading reviews about many places, and intend to travel 12 hours to do the surgery, so hope for the best :)
I have seriously considered Gamma Knife. However, none of the doctors I've consulted with gave me the impression that this is the best option for me. Several said specifically that they think I'm too young for radiation treatment, several others said that is an option to consider, and even the radiation oncologist that specializes in Gamma Knife therapy said that both microsurgery and GK are good options in my case and that he does not recommend any over the other. Hearing that from him kind of pushed me to lean towards having a second surgery. I'm quite hypochondriac sometimes, so I can see myself constantly attributing every sensation ar tiny headache to something going terribly wrong because of the radiation, and I think that after surgery it would be better. Also the 5% or so (I can't remember the exact percentage) of cases for whom the AN continues to grow, despite the radiation, making the surgery afterwards more difficult were kind of the deal breaker for me.
Any way, hope I am making the right decision.
Thank you so much for the positive thoughts!     
     

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