Newly Diagnosed

[cinnamon]

Hello everyone,

      My name is Lisa. I was diagnosed several weeks ago with a 18 mm an. I have been trying to gather lots of information to better understand, this is certainly the site. Thank you so much! I have had no symptoms except some minor hearing loss in my left ear. I just went in for a hearing test, then mri and now here I am. I am scheduled to have surgery on July 26th. I am scared to death. I have seen 2 ear surgeons and one neurosurgeon. Right now, they are leaning towards doing suboccipital. Reading lots of information, I am concerned about headaches. They have also suspected possible mengioma. I am trying to stay strong, so registering on this site is what will help me because so many of you seem so caring and understanding. How do you get through those last weeks and days that approach surgery? I have cried so much I made myself sick. Do you just come to peace with things?

[Battyp]

Hi Cinnamon and welcome to our "exclusive" club!
I know for me I did the freak out thing but going into surgery I was very calm.  It all depends on your beliefs and your comfort level with your treating doctors.  Why suboccipital for you?  Has your team had a lot of experience with AN's?  Have you thought about radiosurgery instead of microsurgery?

I had sub occiptial or retro (same thing) and have not had but a few normal type headaches since surgery.  In the last few weeks I've woken up with quite a few headaches but am finding they are weather related to the storms we have been having here.  I had migraines horribly before surgery for years and have only had one since surgery.  Not saying it can't happen but I've been very fortunate!

Keep us posted and please feel free to ask questions....we do our best to help!

Michelle

[Gennysmom]

Hello there Lisa...I was diagnosed the first of March and have had to live with this for 4 months.  It's not been a piece of cake.  It's been a good time to educate myself so that I'm well versed in everything that will/can happen....which for me is better than not having that time.  It took about a month for me to lose that sick feeling in my stomach, and speaking up for myself has really helped.  I used to be quiet and compensate for my hearing loss, but speaking out and asking people to help accomodate me and understand what I'm going through.  Also don't be afraid to ask your doc for something to help you through...I'd been having some minor anxiety attacks before diagnosis, and in wanting my body as healthy and stress free before surgery I got a prescription for Ativan.  Just knowing it's there has calmed me.  Try to focus on doing as many fun things as you can with friends and family this month....play as hard as you can.  Live and feel life since after surgery there may be some work to do, and it may be awhile before you feel yourself again.  That's been my goal.  I'm starting to be anxious again today, and I think it's just because I'm alone today...I won't be tomorrow or Tuesday....so fill your time with people around you.  The vast majority of people make it through just fine, and you have to believe that you will as well.

[cinnamon]

Hi Cinnamon and welcome to our "exclusive" club!
I know for me I did the freak out thing but going into surgery I was very calm.  It all depends on your beliefs and your comfort level with your treating doctors.  Why suboccipital for you?  Has your team had a lot of experience with AN's?  Have you thought about radiosurgery instead of microsurgery?

I had sub occiptial or retro (same thing) and have not had but a few normal type headaches since surgery.  In the last few weeks I've woken up with quite a few headaches but am finding they are weather related to the storms we have been having here.  I had migraines horribly before surgery for years and have only had one since surgery.  Not saying it can't happen but I've been very fortunate!

Keep us posted and please feel free to ask questions....we do our best to help!

Michelle

Hi Michelle,

The reason for sub occiptial is because the tumor is right against the brainstem. Also, the second ear surgeon I seen said that if it is mengioma, then we would need to proceed this route in order to remove the tumor. I have been told I only have 30% chance of keeping my hearing if i do (retro). I can't recall but i believe you lost your hearing is that correct? I have to say you do give me hope in respect to the headaches. My ear surgeon scared the bejesus out of me! He actually was trying to encourage me to do translab but my neuro is wanting retro. I go this coming week to find out exactly what the plan is. I just had a second mri to see if things have changed. Regarding my beliefs, I do believe in god and I feel that things happen for a reason. I may not know why this has come my way but at some point in life it will make sense. I have always led a very simple life and now is the time for me to climb the mountain. I have been trying to be strong. I just don't know how i will feel as the day draws nearer. I look forward to sharing my thoughts and questions with you. Thank you for giving me some hope.

          Lisa

[cinnamon]

Hi Gennysmom,

  I will be praying for you! Thank you for the words of encouragement. I am happy to hear you won't be alone these next 2 days. I have been trying to keep myself busy. I may ask my doctor for something to calm me as the day gets closer. I think I am nervous that if i don't relax i won't make it through surgery to get it all out.  I am just hoping that god will give me the strength and courage to make it through. I will be thinking of you and i look forward to hearing back from you. I think we have to stick together to get through this bump in the road.

Lisa

[Gennysmom]

I agree Lisa....and it's nice to have people who can truly understand what you're going through.  I've never been much of a pill popper, but Ativan has been a life saver.  I like it because I can take it when I'm feeling anxiety, rather than taking something every day.  For me, right now, that works.  I've gotten close to wife4life, Kim, who just had retro last Thursday, and she's doing great.  She does have some facial paralysis, but it hopefully isn't permanent.  She's really inspired me to get through this as she was able to have a great phone conversation with me 24 hours after she had surgery.   It's just amazing.  If she can do it, I know I can.  I also know that other than the days before, surgery will be a breeze since I get to sleep through all of it....that day is hardest on your family.  Just think about whatever this deals you, the alternative is much worse eventually.  Whatever it is, you will find a way to handle it.

Just FYI, I'm doing translab because I only scored 16% on the spoken word in that ear...it's basically useless anyway.

[Kathleen_Mc]

Lisa: your anxiety level going into surgery has no barring on weather or not you'll be able to stay in surgery long enough to get it all out.It all depend on how your essenial organs are tolerating the surgery. There is no reason you have to go through a ton of anxiety during this period through, speak to your doctor and ask for a mild sedative, especially if you're not sleeping. Remember that it is completely normal to be upset during this time and be sure to talk to others about your fears, the cause behind the anxiety etc.
In the short time between diagnoses and surgery the first time around for me I didn't get anxious until the night before, I basically stayed in the shock and disbelief stage until I checked into hospital the night before surgery. I went into kind of a "high" and handled everything somewhat matter-of-factly (including a hand written will I drew up). I didn't think I would live to get off the OR table and lived the week like it was my last. For some reason I didn't get afraid until the night before and I was only afraid of pain, I wasn't afraid to die just afraid it might hurt.
The second time around I planned the surgery and knew for years the day would come. When the surgeon agreed to do it I then started second guessing myself and did right until they put me to sleep (but I wasn't as anxious the morning of the OR as I had been in the months ahead).
Kathleen

[amymeri]

Hi Lisa and Welcome

I had a large (4cm) AN removed 3 months ago.  It certainly wasn't a piece of cake but I think that the length of my surgery (13+ hours) made my recovery worse.  Don't get me wrong, I did okay but mainly I have had problems with facial paralysis and fatigue.  Hopefully you won't have facial paralysis.  I also post on a meningioma board because my tumor was like yours...either one or the other...so I didn't know which until I woke up.  The meningioma board is very active and very supportive. Check it out at meningiomamommas.org.

I think you are "lucky" to have found the tumor at such a small stage.  I hope/think it will help in your recovery.  We are all here for you through the journey.

Good Luck!
Amy

[mellowrama]

Hi Lisa. I too was diagnosed recently in June with a 22mm...and have it pressing on my brain stem.  No hearing loss, but my facial nerve is tingling so I had an mri and here I am.  I can relate with the emotional upheaval, although I may even be in denial right now cause I'm not letting it effect my life too much until I make a decision.  Just got back from the lake

I'm still researching treatment, but fairly certain that I'm going to get Cyberknife treatment before even considering surgery.  Did you send your MRI's off to someone besides surgeons?  I would vist the CK site and consider Gamma too...My AN may be a mengioma, and the docs all said it doesn't matter much regarding treatment.

Although I've had my ups and downs I'm feeling very positive about the CK treatment working out well and planning something around August.  I'm certainly no expert on this, but I would defintely consider all options before rushing into surgery unless there is something really pushing the issue....wishing you well, melinda

[Battyp]

Hi Lisa,
  I wore a "god is in control" tshirt for my preop....made me keep my perspective...then my mom dragged me around a casino that afternoon and out to dinner.  For what ever reason, I never really noticed the "cones" I had on my forhead....I guess I thought my hair covered them.  Check out my frappr and you can see them.  They're good for laugh )  Especially because I thought at the time they were invisible...no wonder the waiter was being so nice to me at dinner 

I had retro due to tumor placement.  My brainstem was involved.  Before surgery I had no serviceable hearing left.  Funny thing is I swear I have more hearing now than I did then!  I'm going to call my gp and see if he'll order a new hearing test before I lose my insurance.  My son and I play the Ipod game and I could hear it about a month or so ago on full blast and now he doesn't have to turn it all the way up.  It's enough hearing that I don't feel so one sided.  I did for about 6 months after hearing then one night had horrid ear pain and could hear certain sounds (started with the a/c outside when I was laying on my good ear which I could not hear before surgery).  It's not much but I'll take it!

Retro gives them the best visual of the brain stem and facial nerve from what I understand (unless they just gave me a line  LOL)

I also took and sometimes still do...xanax for anxiety.  It helped a lot before surgery.  I was on decadron before surgery due to headaches I was having so I was wired for sound!  The xanax allowed me to sleep a few hours every night.  Otherwise I was like the energizer bunny.

Just stay off any roller coasters! 

You can send your mri's to ck, and other places for second and third opinions....not sure what area you are in.

M

[matti]

Hi Lisa and welcome to our club!

What you are feeling is normal, and trust me, you will have the strength to get through. I never realized how much inner strength I had until I went through this journey. You are on the right track, gathering information, asking questions and coming here. We will help you any way we can. If you ask most of us, the hardest part of this journey would have to be waiting for surgery. I agree with Gennysmon, keep yourself busy.  As far as coming to peace with things...Yes, you do.  First step is accepting the situation and knowing that life may be different. Different but doable! You learn very quickly how to live a "new" normal and yes, sometimes it is difficult, but we are here to get you through it. 

This coming Wednesday will mark 8 years since my AN surgery  ;D  I do everything I did before, but my application process is different.  I wake up with a smile (slightly crooked) everyday and know that life is good! 

We will give you some helpful tips on what to bring to the hospital and what to have ready at home. Please know that we will get you through this and feel free to e-mail.  Sometimes we are a crazy bunch (check out the "Good Morning" thread) but humor is healing.

Sending you a big hug!
Cheryl

[cinnamon]

Wow,

   Thank you everyone for the support. My doctor has explained to me that because the tumor has sort of mushroomed out that Ineed to proceed with surgery within the next 3 months or so. I am quite the planner and knowing that I need to do this, the sooner the better for me. I am extremely afraid of losing my hearing and having facial paralysis and the longer I wait it could do more damage. I seem to do okay with my hearing right now. I think it is strange to go into surgery giving it up. My doctor did give me the option of radiation but felt it would make things more difficult later if I did have surgery. My thoughts are that I would like to get it removed and hopefully it won't grow back.

    I did not send my mri to any other surgeons mostly because I want support from family and friends in my local area. I traveled alot as a child and the closer I am to home the better. I have a huskey named Cinnamon and I hate to leave her for the time that I will be in the hospital. Call me crazy but my dog is really important to me. Just knowing that my husband can take care of her at night makes me feel better. We have been trying to get pregnant for 2 years and as you can see she has became quite important to me. I even call her my baby. I am not giving up hope on having children but I need to make it through this hurdle first.

    I have felt so much better just hearing from all of you. I am definitely looking forward to staying in touch as I deal with this and even as I am on the road to recovery.

[matti]

I can so relate, I have a black lab named Cosmo and I very rarely travel because I do not like to leave him. I have 2 grown sons who are extremely jealous of him.   When I had my AN surgery 8 years ago, my husband would take a picture of Cosmo everyday and bring it to the hospital. Some pics he had a sign that said "I love you mommy" or "Please hurry home".  The nurses would stop by to see Cosmo's pic of the day LOL.  He was so sweet during my recovery, he kept wanting to lick the side of my head.  He is a big ole couch potato who still thinks he is a puppy and likes to curl up in my lap. I also call Cosmo my baby.

[Gennysmom]

I,  too, can relate and carry parrot feathers around with me....I have them in my car when I travel and I'll take them to the hospital.  I only travel because I've been blessed with pet sitters that are good at what they do and I know my girls are well taken care of....but when I just returned from Europe, instead of one or two kisses, my macaw, Genny, had to give me about 25.  Now I have to leave her again.  We have a very strong bond, and I'm sad that I won't be able to tuck her in at night for a little while.  We have lots of traditions, like  parents do with small children, and I have to scratch her back, and tell her I love her, and she repeats "scratch" and "I love you" back.  I hope to get back on here before your surgery so I can tell you how well mine went.  Hang in there and like I said...go get some Ativan or Valium or something.  It's saved my behind from going crazy the last couple days, and as others can probably tell you, I've been pretty strong throughout this whole ordeal.  And take your vitamins....one of my worst fears was catching a cold and having to delay things at the last minute.  My doctor is going on sabbatical in August, and if I was sick that would push it back to October....and I don't want to wait anymore!!!!!!!

[cinnamon]

I am going to see my doctor friday to discuss some final details regarding the exact plan for surgery. I will request something to take the edge off. I too feel I have kept pretty strong so far but I don't want to take any chances.

It's so funny how your animals make your life something to live for. I like the idea about having a picture to look at each day Matti. My Cinnamon is closer to me than my husband so she will be anxiously awaiting me to come home. When I first found out about my an, I just cried and cried and she laid right beside me like she knew what was happening. She is 9 now and not until recently have I let her in the bed. I will have to be careful since she weighs like 65 pounds.

I truly wish you a speedy recovery Gennysmom! Even though I don't know you I really hope things will be okay for you. I think if you just trust god- things will be okay. Keeping strong and taking one day at a time. Get some rest and I will be waiting to talk to you real soon!

Sending you a great big hug,

                   Lisa