Advice on AN of 2.9 cm in size

[spyouthspirit]

Hello I was looking to talk to find out more about how to approach a solution!  I have three small children and the doctors said this was large - I am looking to hear success or advice - PLEASE !!

[Kathleen_Mc]

Hi : First off what does your doctor recommend you do? Have you asked for a second opinion and if so from another type of doctor? (for example if your doctor is a surgery pro. have you spoken to a radiolog. pro)? How do you feel about it...can you be monitored for a period or is intervention necessary at this time? I do believe you are close to the upper limit of size for gamma knife and if this is true is that something you want or do you want surgery. I too have very small chilren (3 and 6) and have monitored for regrowth for 5 years, psychologically it bothers me terribly and have asked to have the thing removed now while my children are too young to fully understand  what is going on (they acept it's a bump in my ear and ask no futher) and while I am young enough to hopefully have a fast recovery. I would suggest you get a second opinion before you make a decision and then do something now about the problem before it has a chance to get much bigger.
Kathleen

[matti]

I had surgery in 1998 at 40 years old to remove my 3.5cm AN. I am now 7 years post-op and doing just fine. I did lose my hearing and I do have some facial/eye problems, and memory, but all in all, life is very good. My boys were 12 and 15 at the time, so they were able to help out quite a bit, as well as my hubby.  I agree with Kathleen, that you should get a second opinion and do as much research as possible. Your tumor is large and I would not wait too long. What are your symptoms?

This might ease your mind, it certainly did mine. On my first visit to the surgeon and neuorsurgeons, the very first thing they all said was, "You are very lucky, if you were going to have brain tumor, THIS is the one you would want to have". From that moment on, I was not scared or nervous and faced it with a very positive attitude, which I know helped in my recovery.

Gather all your research and info together, make lists of questions, bring someone with you to your visits and don't leave until your questions are answered. Make sure whoever is performing surgery has alot of experience. Where are you located?

Please keep us posted.

matti

[Goldineye]

Spyouthspirit, Dont wait too long . The bigger the tumer the more chances of having complications. I had a 3.5cm removed 1 year ago in April. I had many problems,If you are looking for info you can contact my email it'a on my profile. But just know to do your research. It took me 3 mths to research who I was going to use.But get it done. Good Luck... Goldineye

[russ]

Hi spyouthspirit!
  This is on the lower end of large. Do you still have hearing that side and is this AN near your brainstem?
  If not near the brainstem, get another opinion, research your options ( read ) and choose a facility which does lots of surgical AN removals.
  Don't get panicky but be methodical.   -Russ

[rebecca]

Hi,

If you haven't had your surgery yet-I had great results for a 3.something AN.  I sufferred a bit of facial paralysis in the beginning but it's almost all gone (people say they can't notice it--but of course I can--we are our worst critics).  I can empathize with you because I have a 9 year old beautiful daughter.

The good thing about these tumors is, they are operable and 99% of the time, they are benign.  I wish you the best.

I was back to work full time after 2 months (could have gone back after the 1st month, but I opted to be a stay at home mom for another month!--I was also leery of going back, but it turned out that work was actually therapuetic.

Once you get to the other side of the surgery, you will feel so blessed, and probably, much better!

Sincerely,

Rebecca

[RamAir]

Hello I was looking to talk to find out more about how to approach a solution!  I have three small children and the doctors said this was large - I am looking to hear success or advice - PLEASE !!

I had a little over 3cm tumor.  It was successfully treated with FSR LINAC.  Going on 5 years now...no issues. I did not lose my hearing, have no facial paralysis, nothing at all really.  Why people still choose neurosurgery is beyond me.  I keep hearing references like, "Trust your doctor" or "do what your doctor says".  Bunk!  I saw five neurosurgeons who all told me the same thing, LINAC and Gamma Knife don't work.  Well, lucky for me, I refused to believe them and have had no regrets. 

For what it's worth, I was treated five times over 2.5 weeks. I never missed a day of work, and even played hockey through the treatment.  LINAC/Gamma Knife are the best approaches in my opinion.  Surgery has too many side effects.  If 5, 10, 15 years down the line, my tumor shows signs of growing, I can simply have it "zapped" again with no ill effects. Can't say the same thing about surgery...do your research and DO NOT give ANY doctor 100% trust.  They are all business men selling their craft.  You need to speak to doctors from all disciplines to get an objective answer.

[AngelaRupp]

My situation was similar to yours.  My children were 5 and 1 when I was diagnosed.  I had tremendous support from my husband and my parents.  They took over the care of the kids while I recovered from surgery.  My youngest couldn't understand why his Mommy couldn't pick him up!  I had to sit on the floor and hold him in my lap.  It's amazing how you can and do cope with this!  I had my surgery 2 1/2 years ago.  I've had another baby since then, work full time, and certainly don't take life for granted any more!  I have some pain issues with my face ( my nerve was nicked, but not severed).  Medication helps this.  I lost my hearing in my right ear.  (This can actually be beneficial when the kids get out of hand--put my good ear in the pillow!)  My balance has come a long way.  Still couldn't pass a sobriety test sober in the dark if I tried!  My husband thinks I'm not nearly as clumsy now as before my surgery, though.  Remember--- much of what you read online is negative. Many of us who do well after surgery don't post our stories as much, so the success stories do seem few and far between!  Keep hope!  Keep us posted!
Angela

[Pembo]

My children were 8, 5 and 1 when I had my surgery last summer. It was tough on them to see Mom sick but we all made it though. I had to have a very long surgery for my 4 cm an and I had a long recovery but one year later we were at Disney World. You'll be okay!