Bell ,shares her AN story

[bell]

Hello fellow AN's.  I wrote a few weeks ago and since then I have spent many hours reading.  I truly appreciate all of your info, advice, and prayers, anmd courage.  Thank you.

Had MRI in July because of headaches and other "weird symptoms."
Did not hear from general physician, (one I have never seen.)
4 days later went to ER and he informed me I had Allergy reaction, virus, and a brain tumor. OH....
Went to ENT = hearing loss is minimal, no response and decay in right ear.  Slightly off balance and ringing in ears.
Clinic called 2 weeks later and told me I had Lyme disease, never mentioned AN.  HMMM...
Saw Neuorologist at U of MN, confirmed my AN and discussed options.
Submitted medical info to Mayo Clinic, MN, but was informed they do not accept everyone.
Went back to U of MN and set up surgery date in Nov 13th, Translab.
Went to Dr. Link, Mayo Clinic, Oct. 17th.  I had the best exam and I truly felt 100% confident that this is the best place to be!  Had a few red flags at U of M.
Date set Nov.21st retrosigmoid, Mayo, MN since hearing is still good.  Surprised that translab was considered before!
I posted  on this sight after the visit and I was excited to get the lump out.
2 weeks ago Dr. Link wrote to me and informed me that I had a small tumor 3 years ago form MRI taken.  I guess someone missed it.....

5 days till surgery I am getting more emotional and scared. I know things will be fine but you know how I feel...  I am trying to get all x-mas shopping done that is crazy, but I will suceed,ho ho ho...I am anxiously waiting for next year.

I have many prayers and that will help, I have many blessing and this is one obsticle to overcome and then move on!
My daughter, 10, is putting it all together and asking alot of questions and I am trying to explain without to much complication and worry.  My son, 8, hasn't asked to many questions.  My husband has been great.

To newbees,  research and ask questions and of course read this forum, it has been awesome.  I will probably write before surgery on Fri.  My hardest decision is what to do with my hair!  Take care, Bell     

[Dog Lover]

Hi Bell,

Yeah, it's pretty hard the closer it gets to surgery. Although I didn't have to worry about xmas shopping, I remember thinking that I had to have everything just perfect before I went in. The night before surgery I was in the back yard cleaning up dog poo! (Actually, that was a good thing because I wasn't able to get back to doing that for 2 months! LOL..good thing I have little dogs and a big yard!)

My hardest decision is what to do with my hair! 

Actually, this is the easiest. Do nothing! I had/have shoulder length hair and I worried about that, too. They put it up in a pony tail - like Pebbles from the Flintstones - and it stayed that way for 5 days until I got my big old turban off.

Hang in there and you will be fine. Mayo, IMHO is one of the best places in the US. They saved my daughter's life when she was 10. And that was 14 yrs ago! They were my 2nd choice to go to.

You will be in lots of peoples thoughts and prayers.

Cathy

[wendysig]

Hi Bell,
I know, as we all do, the anxiety that comes with an AN.  It sounds like you have found a wonderful doctor and surgical team the Mayo Clinic has worldwide reknown.  You will be in good hands.  I have two daughters, now 14 nad 12.  When I told them about my AN they were very worried and scared at first.  I told them as much as I thought they could handle, which turned out to be quite a bit.  Although I didn't mention the possibilty of facial paralysis.  Your 10 year old can probably handle quite a bit too.  Just don't go into detail about everything.  It is better to prepare her to some extent for what she will see when she comes to the hospital, if she will see you there, and what you might be feeling when you get home if she isn't.  I told my girls about the headwrap and that I might look a little different but assured them I would be fine.  Once they knew I wasn't afraid, and I wasn't, they were okay too.  Shortly before my surgery I had this wonderful feeling of calm -- the house was in order and stocked with food, we had friends and family we knew would help us while I was in the hospital and after I came home, my daughters' birtrhday parties were planned, all I had to do was show up --everything I could do was done I trusted my doctors and was very hopeful for a good outcome.  I believe in the power of positive thinking -- it does help.  So finish as much Christmas shopping as you can, make sure you have help lined up for your hospital stay and return home and try  think positive throughts.  You will get through this.

 You don't have to worry about what to do with your hair, most docs will tell you not to cut it if you ask.  I had a trim right before my surgery.  I don't know if your hair is short, long, or somewhere in the middle, but unless you need a trim, I would just leave it alone.  The doctor will take care of your hair for surgery.  I'm not sure what was done to my hair since it had nothing in it (no gel or Betadine) when the head wrap was removed, although a fiar amount was shaved.  My hair is cut in layers and is slightly long than shoulder length and covered the shaved area well.  Unless I put it in a ponytail, no one would have ever guessed part of my head was shaved.  I am 3 1/3 month post-op and recently went for my first haircut.  The area that was shaved has filled in to the point that it is about the length of a very short haircut, but my hair is thick enough and I blow it out so that iti is very full.  Again, no one would ever guess what the underside of my hair looks like on my AN side. 

Wishingi you only good things,
Wendy

[Debbi]

Bell-

Perfectly normal to be experiencing a roller coaster ride of emotions this close to the "Big Day."  Do try to find some calm moments for yourself.  And, the rest of the time, just keep busy.  It is probably good that you are taking care of the holiday prep now - for ne thing, it's keeping you busy and occupied and productive, and for another thing, you may not feel much like it right after surgery. 

I had translab, so not sure how much hair they take off with retro, but do ask your doctor.  I only had about an inch strip of hair shaved so it never showed.  And, don't worry about your hair on surgery day - the doctors will ponytail to you!  It won't look nice, but it will work.    And, you won't care much about how your hair looks, believe me! 

Hang in there, and breath!

Debbi

[MAlegant]

Hi Bell and welcome,
This is a life-altering event; at least it was for me.  I  learned that good doctors and a high standard of care seem to be good indicators of a positive outcome.  (The hair/scar thing just was not a big deal for me. And now it's all grown in. )
 Good luck and post often.
Best
Marci

[Jim Scott]

Hi, Bell:

Thanks for posting your story.

It appears as if you're going through the usual pre-op preparations - and the usual pre-op jitters - but I surmise that you're in good hands and will do just fine.  The Mayo Clinic is, as you know, world-renowned.  Many of our ANA members had their surgery at Mayo.  You seem to be very confident with your choices of facility and doctor.  This is crucial to getting through this with at least a modicum of serenity.  That serenity is often reached about the time you're wheeled into the OR and realize that you've done all you can do; you've prepared your kids, cleaned up your home and so on as best as anyone can and at this point, you've given this over to God and the surgeons and staff that will attend you during the operation.  As for the 'hair question': I think the ladies have pretty well answered that one.  Leave it alone.  They don't shave your head, only a small strip of hair and the 'bald spot' can be easily covered.  I'm a guy with a fairly short haircut and my shaved area grew back in about a month.  Within 6 or 7 weeks, it was all but invisible.  This is a natural concern for a woman, I know, but hardly anything to fret over. 

The bottom line is that you're prepared and ready for this necessary surgery and although you naturally have a few qualms as you face something admittedly serious with some unknown factors involved, I think you have the knowledge and the confidence to come through it with all flags flying.  Until Friday (21st), try to relax and above all, take care of yourself. 

Jim

[RosemaryL]

Hi Bell:

I agree with the "don't do anything" approach to the hair.  I had retrosigmoid approach.  They shaved a strip about one-half inch wide - from below my ear to almost my crown - large C-shape.  My hair was shoulder length, so by the next day you couldn't tell I'd had head surgery if you didn't already know.  You just need to be cautious when you fix your hair.  And they did a fabulous job of closing me up - my hair stylist can't find the scar.  BTW the other woman who had the surgery the same day had short hair, and you could tell she had had head surgery.

If you were not having symptoms, I'd say you were lucky the tumor wasn't discovered 3 years ago.  Surgical techniques continue to improve.  Even though I had retrosigmoid, I lost all hearing in the right ear - though the nerve was still functioning.

Best advice - be positive!  You will overcome this obstacle.

Rosemary

[leapyrtwins]

Bell -

thanks for sharing your story. 

Kudos to you for pursuing your diagnosis; ANs are often overlooked for years.

Best of luck on your upcoming surgery.  Sometimes waiting is one of the hardest parts, but you'll get through this.

Kids are pretty resilient - mine were 11 at the time of my surgery and they were fine with it.  Their biggest concern was whether or not I'd have my entire head shaved - thankfully, no 

Hang in there; I'll keep you in my prayers.

Jan

[Omaschwannoma]

Ahhhh, I see the "welcome wagon" came out in full force.

I have nothing more to add except I too, will be praying for your excellent outcome from surgery and see you on the other side!

Oh yes,  my heartfelt prayers to your surgeons, and nurses on that day.

[Anomar11]

Bell,
I had a consult with Drs Link and Driscoll.  I feel you are in some of the best hands in the country.   You'll be in my thoughts and prayers.  Mona