Diagnosed today 11/11/13 in Connecticut

[jcam]

Hello Everyone,

I'm trembling and teary eyed as I write this. I am a 40 yr old female in fair to poor general health (5 abdominal surgeries in the last 3 years, 4 hernia and 1 small bowel resection. Currently have a small ventral hernia). Today I was diagnosed with a 39mm x 36mm x 40 mm AN on my left side. The doc said it is the size of a plum and is pressing very hard against my brain stem. I burst into tears when he showed me the images from my MRI. The only symptoms I have are being off balance and I have been deaf for almost 10 years (following an ear infection, doctors said the deafness was due to). I am in Connecticut, and almost completely alone. I have insurance through my job, for now, but it isn't great. My neurologist, Dr. Montanye, has referred me to Dr. Kureshi at Hartford Hospital, who I will see on Friday. Due to the size of my tumor, surgery may be needed very quickly. I do not have funds to travel or to pay for anyone out of network. Has anyone had any experience with Hartford Hospital or Dr. Kureshi? I'm so scared.

Thank you,
Jess

[LakeErie]

The first day can be the hardest, so things will get better for you once you learn more about the tumor. You can get literature and information directly from the association. That is a good place to start.
I had a large tumor, too, and am doing well now just over 2 years after surgery. I sympathize with your abdominal surgeries as I had my descending colon resected Sept 30 and as a complication of that surgery have an inguinal hernia that will need repair.
You need to start somewhere so the doctor you were referred to would be a start. You most of all need to determine the doctor's experience in dealing with AN's specifically. That experience is the most important factor in your outcome. Being on the east coast you have many top neurosurgery centers available to you for 2nd opinions.
While AN's are serious, we all have survived the process and manage to get on with our lives after treatment in almost all cases. Take this one day at  a time and learn more as you go. You cannot learn everything all at once. And the more you learn the better you will feel about your situation. Good luck

[xiphias]

Hi Jess,

Although I don't know anything about your doctor, I'm in a similar boat to yours (just diagnosed with a large tumor, being rushed through, don't really know what's going on). I'm finding the moments of panics are balanced with moments of confidence; I just have to hang on and surf through. I've been reading up on ANs (using peer-reviewed scientific journals -- Google Scholar is a good start at scholar dot google dot com) and I found it helpful; I think I know enough now to have a reasonable discussion with my neurologist next week.

You sound like a tough person already, having managed through so many surgeries. I'm sending you my best wishes.

[sandyinwisconsin]

Jess,

I wish I could help you.  I'm from Wisconsin and my insurance too only will let me chose from 3 hospitals.  Mine is 1 cm, and I'm 44.  I've known about it since May of this year.  As it turns out, Madison does have a great surgeon and oncologist. 

Sandy

[Jill Marie]

Hi Jess,

Feel free to ask as many questions as you want/need too!  There are lots of people here ready, willing and able to answer your questions, the best we can from what we have learned.  My surgery was 21 years ago, at the time the doctor in Network had only been doing surgery for a couple of years and not on my specific tumor location.  The surgeon my doctor wanted me to have remove the tumor agreed to take whatever my Insurance would pay for and the assisting doctors and hospital agreed to do the same.  There are options so keep looking and learning, make sure first off how soon you need to have the tumor taken care of so you get a better feel for how much time you have to decide what to do.  Your not alone so come and visit us anytime!  Jill    

[Echo]

Hi Jess,

You've certainly been given your fair share of challenges to deal with.  I hope you can find some comfort here with those of us who understand your fears and worries regarding your AN.  You are not alone! Reach out and post here anytime you feel overwhelmed and need some support. You will get through this.

Take care,
Cathie.

[Jim Scott]

Hi, Jess ~

I apologize for overlooking your post that mentioned you live in Connecticut, as I do.  I received your PM and replied with the information you requested.  I hope it will prove useful to you.

Jim