My son just diagnosed

[niteowl]

Hello everyone,
My name is David and my son Cory age 26 was just diagnosed with AN. I will try to make a long story short and ask my questions in the process.He went to the hospital on June 16(this year)with complaints of headaches.The diagnosis was made on July 26 and we just found out about it on Sept12,so needless to say our lives at this point are totally upside down.His Dr said that the AN is about the size of a fifty cent piece,so if my figures are correct that would be about 1.5" ?? that equals out to about 3.8 cm and according to the ANA website this is considered a large tumor.Other than the headaches,the only other thing that is different for him he says is that his chin is numb,no balance issues or hearing loss that he can feel.Also I feel that this was discovered about 9 years ago at another hospital,he was there for a head injury and they saw this spot(exactly where the tumor is now) about the size of a pencil eraser,but they thought it was a calcium deposit and said it will always be there to not worry about it.Well here we are now.And for my son I will know as much about this tumor and the removal procedure as I possibly can so that he will have an outcome as positive and complication free as the many other stories that I have read on here in the past 2 days.I have all the literature from the ANA coming in the mail,and we will begin to search for Dr's at that point in time.We live in Michigan,so U of M and Chicago sound like our best bets at this point.Any and all information that anyone can add here will be greatfully appreciated.I have so much been enlightened by all the stories of success on here and the upbeat attitudes that I look forward to becoming a part of this extended family. Have a great day and God Bless each and everyone of you and the Dr's that treat this condition.

[luv2teachsped]

Dear David: I had a translab on my 2.5cm tumor done at U of M on May 18, 2005.  I can't say enough about the clinic and the Dr.'s there.  They were very understanding, took their time to answer all my questions, and took very good care of me! They are very knowledgable and do many AN surgeries every year.  Good Luck! luv2teach

[stein78]

David,
Tell Cory that his youth is on his side!  I was 26 when I had my surgery (turned 27 2 weeks after I was home) and things were not as bad as I expected.  I am 4 months post up and doing great!  I had my surgery (retrosigmoid) done at Loyola in Chicago.  They were amazing.  Let me know if you have any specific questions.

You can read my story here: http://anausa.org/forum/index.php?topic=224.0

[DeniseSmith]

HI,
I had an MRI on 4/5/05 and was diagnosed, at that time my tumor was 1 1/4 inches.  On 5/9/05, I had surgery to remove my tumor, at the time of removal, my tumor was over 2 1/4 inches which I was told after the surgery was quite large.  I live in Minneapolis, and went to the U of M, Fairview Riverside, I saw Dr. Samuel Levine. It took me two weeks to get into see him, and I was told by my EMT specialist, he was one of the best in the US.  He has been doing these types of surgeries for a number of years, lots of experience.  Once my surgery was over, I spent one day in ICU, then about 5 days in the hospital. I had problems with coordination on my left side and was discharged to Fairview Rehabilitation. I stayed there a week and was given physical and occupational therapy everyday.   My experience with Dr. Levine, and his office was and continues to be very positive. Good Luck to your son and your family.    Denise Smith

[jamie]

I had an MRI on 4/5/05 and was diagnosed, at that time my tumor was 1 1/4 inches.  On 5/9/05, I had surgery to remove my tumor, at the time of removal, my tumor was over 2 1/4 inches which I was told after the surgery was quite large.

You're tumor grew an inch in one month?!  Am I reading that right, is it perhaps an error, or was it a different kind of tumor? At that growth rate it would be a foot in one year!

[DeniseSmith]

you read it right, it emeshed itself within my facial nerve and a blood vessel was feeding it.

[jamie]

Wow. I've never heard of that kind of growth rate for a schwannoma. Did your doctors say how unusual that was? I'll bet it's almost unheard of.

[niteowl]

Thank you all so much for all the positive and upbeat replies that have been posted here,it means so much to us.This being day two of knowing his condition we have found out more than we ever thought we would and haven't even spoke to a surgeon as of yet. We are leaning toward U of Michigan as we are in Michigan and I have heard nothing but positive about them.If anyone has anything positive to add and or negative it would be most appreciated.Our biggest obstacle to overcome right now is the fact that he had just started a new job and he has no Insurance.We started the process of aquirring Medicaid and are praying that he quickly gets approval.I know that God only hands out as much as he thinks you can handle,and to hear the positives on this forum really adds to that strength.I will keep all updated on his progress as we go along.Have a great day and God Bless each and every one...David

[luv2teachsped]

Dear David:  I had Dr. Steven Telian(ENT) and Dr. Greg Thompson(Neuro)do my surgery and they were fantastic!  I also had 2 friends you have had their surgeries at U of M also and could find out which Dr.s they had. One friend is a fellow special education teacher who teaches in the same district(very small, I might add) and the odds of having a AN tumor are 1 in 100,000, how odd is that?  But being able to talk to her before and after my surgery was really a godsend.  I'd be glad to help you and your son in any way . luv2teachsped

[DeniseSmith]

Jamie, it was pretty unusual. Dr. Levine said he had not seen one that big in years.  As I read other peoples comments, it seems like everyone had alot of time between diagnosis and treatment. I was unfortunately not afforded that luxury. My diagnosis to surgery timeline was only about 5 weeks.  My symtoms were very pronounced during that time. 

[Cory]

I'm not exactly sure what to say so I guess I'll start by saying thank you. Thank you all for the support and information that you all have given my father and I. September 13th was a pretty hard day for us. See I recieved the letter from the hospital on that day diagnosing me with the acoustic neuroma. At that time I knew nothing of this so I went back to the dr. that day. He really didn't explain anything to me at all, or well atleast nothing that I understood. The only things that caught my attention were "tumor" and "fatal". I was so scared and confused that I didn't have any clue as to what to do. I called my father who was at work on his way to Canada and he came home. I met him at his house around 1:30a.m. We discussed things but really didn't know anything at all. I went home around 4am or so and finally fell asleep around 6. My father had called me and recieved so much information. In a span of 4 hours I went from thinking I was going to die to actually believing my father in saying "were gonna beat this." After extensive reading of the posts in this forum I do believe we are going to beat this. Yes, I will admit that I am still extremely scared, however I have my dad in my corner and I know he isn't going to let anything happen to me. I read alot where you all have said to stay upbeat and to keep a sense of humor about this. Well I couldn't do that without him. Trust me he's definately in touch with his sense of humor. I want to thank you all so much for the encouraging words of support and prayers. After reading as much as I have I feel alot better. I don't have the vocabulary to express my gratitude for the information we have recieved in such a short amount of time. Thank You and God Bless You All ...

[jamie]

Jamie, it was pretty unusual. Dr. Levine said he had not seen one that big in years.  As I read other peoples comments, it seems like everyone had alot of time between diagnosis and treatment. I was unfortunately not afforded that luxury. My diagnosis to surgery timeline was only about 5 weeks.  My symtoms were very pronounced during that time. 

Well, I'm very glad that is was successfully removed. 

[jamie]

My father had called me and recieved so much information. In a span of 4 hours I went from thinking I was going to die to actually believing my father in saying "were gonna beat this." After extensive reading of the posts in this forum I do believe we are going to beat this.

Of course you are. I'm not sure why the word "fatal" was brought up by your doctor. I guess there's alot of medical problems that could be fatal, but these, while a pain in the butt, are very rarely fatal. It can be fatal if it is ignored and left to grow, provided it actually keeps growing, sometimes they stop growing all together on there own. Just remember it's not cancer. You'll be fine. 

[luv2teachsped]

Cory:  I had my surgery just this May at Uof M, so I am 4 months post surgery this Sunday.  Each day things get better and better.  Hey , I went through my"tumor" as I was also going through a very nasty, ugly divorce, I'm a lot older than you and I'm very glad I went through it all.  You see. I believe there is a reason for all things, I am a special education teacher and I have really "walked in my students shoes" these past few months. I've had to learn to advocate for myself as well as my kids.  My balance is still a little "off" at times, but we all laugh and say I have the wobbles just like some of my kids!  Hang in there, keep a positive attitude and you'll do just fine.  It sounds like you have a very special dad in your corner.  I am very fortunate to say I had and still have a very special daughter in my corner pulling for me!!  Take Care, luv2teachsped

[cookiesecond]

Cory,
During this time family and frinds are priceless. I am glad you have such a caring dad. I had a 3 cm AN removed August 2. I am still recovering but am improving each day. My family and friends have been great and I thank God for them. Take care of yourself and do not get caught up in the negative stuff.You will be in my thoughts and prayers.
Lynn