Newly diagnosed - 28 years old, have young kids, so scared!

[bdsgurl]

 :'(Hi,

I am a 28 year old mother of three little girls, 6, 3 and 6 months old. I was just diagnosed with a 4cm AN a few days ago. Because of the size of the tumow they have scheduled my surgery for Feb 11. I have been blindsided by this news and quite devestated. I am so scared of dying and leaving my three babies...They have never been away from me for any real period of time and i am so worried about leaving them with family for the duration of my surgery and hospital stay. I am also nursing the 6 month old and am working with my lactation specialist on how to best transition her to bottles and convince the nurses in ICU and then MEDSURG to help me pump to keep my supply up so i can continue when i get out of hospital. I feel like my world has just been turned upside down in the last few days, im trying to keep my chin up for the sake of my kids, who i dont want to scare by my acting terrified, like i feel inside. Has anyone else been in a similar situation?

Also my husband and doctors and everyone keeps telling me that ill be ok, that i will only be away from my kids for like 4-6 days then home...why do i doubt them...i just feel like they are trying to make me feel better and that the reality of this is much worse.

I am having my surgery Translabyrinth (think thats it)...please help me, im so lost.

[krbonner]

It is scary, I get that.  The unknown can be overwhelming.

I was diagnosed when my younger son was 4 months old.  At first, we thought I would need immediate surgery as well but the tumor - fortunately - was smaller than originally thought so I was able to wait a while (nursing was incredibly important to me, too).  I ended up having surgery when my sons were 4.5 and 1.5 (the younger one weaned around his 1st birthday), so while I didn't have to worry about the breastfeeding it was a scary time to go through such a medical ordeal.

First off - nursing.  Rent a hospital grade pump for the time you can't nurse.  If it's all possible, have an advocate in the hospital with you (a family member or good friend) who can make sure you're hooked up to that pump at regular intervals to keep your supply going.  You don't even have to be awake!  :-)  My mom is a midwife, so she had volunteered to do that for me if I'd needed immediate surgery.  Another young mom here (arkansasfarmgirl) recently had surgery in LA and, last I'd heard, was able to go back to nursing her baby afterwards.

The typical hospital stay is 5ish days.  (I was sent home on the 5th day.)  As a stay-at-home mom, my concern was how long it would take me to get back to taking care of my kids again.  By about 2 weeks post-op I was able to spend good time with them again (the first couple of weeks you just spend a lot of time sleeping, which is what your body really does need to recover), but I wasn't alone with them (for no more than a few hours) until at least 4 weeks.  It was about 6 weeks before I could get through the day on my own, though I'd then spend the rest of the evening recuperating on the sofa once my husband got home.    Beyond the first week or so, the biggest issue for me was the fatigue and lack of energy. 

It's a tough time, no question.  I'm now 2 1/2 years post-op.  My sons are almost 7 and 4, and I've got a third baby on the way.  And aside from being completely deaf on one side I go for days and days without thinking about my AN.  You, and your kids, will get through this and the girls won't even remember it.  Even my older son has no memory of when I was in the hospital.  Don't be afraid to ask for help over the first few months - giving your body the time and opportunity to recover makes a huge difference.  I know that's *really* hard to do with young kids at home! 

Keep asking questions.  (((hugs)))

Katie

[Pooter]

I had two small kids when I was diagnosed also (7 and 3 at time of diagnosis).  First of all, take a deep breath.  My first fear when I found out was that I was gonna die, also.  VERY rarely does surgery result in death.  My younest even came and saw me in the hospital and ultimately told people that I had gotten into a fight and a man cut me.  My 7 year old was never really phased by the hospital stay (either of them).  Kids are resilient and really roll well with the ups and downs of surgery and recovery.  Adults seems to have a harder time than they do.

Like you, my surgery was pretty fast after diagnosis (less than 1 month).  Both kids only knew that I was going into the hospital for a problem with my ear.  Right at surgery time, we told the oldest a little more (mainly because she could handle more information than the younger one).

I won't lie; you'll need help during the first part of your recovery.  Family, friends, etc..  They can all be of some help, especially with your youngest but really with all of them.  I watched my youngest alone for the first time at about 1 month post surgery and I did just fine (even battling a sickness that ultimately landed me in the hospital again for 4 days).  You will probably also.

I know this information is daunting, but you WILL get through this.  With the help of family, friends, and people you didn't expect, you'll make it through.  If you feel up to the information, read my entire story (diagnosis, surgery and beyond).  The address is in my signature below.

There's no two ways about it, this is major surgery and your body will need time to recover from it.  Listen to your body and you'll know when you can do certain things and when you need help.  As Katie said, don't be afraid to ask for help from others.

We're all here for you and will help in any way that we can.  Information is power.  Read through everything you can get your hands on to feel confident.  It will only serve to help you down the road if you know what to expect.  As Katie said, ask questions.  We're more than ready to answer them.

Regards,
Brian

[leapyrtwins]

Hi and welcome 

Being scared is perfectly natural, but keep in mind that chances of you dying from AN surgery are slim to none. 

Although we are a wonderful resource and an excellent support group, I also recommend that you contact the ANA and get their informational literature.  They will also send you a list of patients who are WTT (willing to talk) which you will find very helpful.  Some of the WTT patients on are on the forum; some aren't - and IMO you should get all the emotional support and reassurance you can find.

Obviously everyone on this forum is more than WTT - so feel free to ask us anything, share your thoughts, or just vent if you need to.

Who is doing your surgery and where?

Jan

[Cheryl R]

Hello.    It is ok to be so scared.     We have all been thru it who have had surgery.      At first you will not feel good  but it really does get better.            There is also a wide variance in what people experience  post op.     We can't give you the perfect answer that way.      Some have headaches some don't.     Some are dizzy,some aren't.          There will be some kind of off balance feel which does improve in time.   Sometimes the brain has already compensated some.        You will be very tired at first.         The taste may be off for a while.   Some do have facial paralysis that goes away in time.     The tumor can damage nerves.     Part depends on tumor location.     The odds are you will lose the hearing on one side but that is easier to live with than one thinks for most people.
Many people here do well and post for a time and then are back to their regular life and one can adjust easier than you think if that is needed.            
The most important thing is that you are having a surgeon who is VERY experienced in doing AN surgery.     A weekly basis is best.    
                  I wish you well!                       Cheryl R

[bdsgurl]

I really appreciate all your replys. I am having surgery at St vincents med hosp. with Dr brackman of Ear House Institute...

[Sue]

Hi bdsgurl, and welcome to the Forum.  I am so sorry you had to join our group.  It's overwhelming, to say the least.  I know everyone feels like they just got run over by a Mac truck when hearing the news that they have a tumor inside of their head.  Not the best day of that week, that's for sure!

With any surgery or medical procedure there are risks, to be sure.  But, odds are highly in your favor that you will survive this surgery and even though you won't forget this episode in your life, it will surely fade to a blip in the overall scheme of things.    

The biggest hurdle, in my opinion, that you will have to face is not necessarily the surgical process, but rather dealing with things that crop up afterwards.  As Pooter said, you will benefit from some extra pair of hands at your house for awhile.  You will no doubt suffer from fatigue. As your brain adjusts to everything that it is going through, it makes you very tired.  

Looks like you have a good doctor.  Great!  I just deleted a whole paragraph on getting a good doctor, and you did, so that's half the battle right there.

I wish you the best of luck with your surgery and your eventual healing.  Your babies will be fine.  I had a similar kind of reaction when I had to have surgery years ago.  I was worried about my 5th grader, who as it turned out, didn't really freak out that Mommy had to go to the hospital for a few days.  And it looks like you are getting some good advice from other's more experienced in your situation.  Is this a great group, or what?

Hang in there,

Sue in Vancouver, USA

[Kim Zingale]

Hi,

Just wanted to let you know that the people here are very helpful for whatever questions you have. Feel free to ask as many as you need to between now and Feb. 11.

I'm scheduled for surgery on Feb. 9 at Johns Hopkins. My tumor is smaller than yours, but the impression I've been getting is that since we're young, we have a better chance of coming out of this whole thing in pretty good shape. I don't have kids though, so I can see how you're nervous for them as well.

Anyway, I think you'll be in good hands at House/St. Vincents. I'll be thinking of you!

Take care,
Kim

[JerseyGirl2]

I really appreciate all your replys. I am having surgery at St vincents med hosp. with Dr brackman of Ear House Institute...

Hi, Bdsgurl,

You'll be in wonderful hands at House and St. Vincent's. Do a search on House on this forum, and you'll see quite a few posts by those of us who are "satisfied customers." I don't know if you live in the Los Angeles area, but I'm assuming that if you're having to travel a distance for your surgery you already know about the facilities at Seton Hall, adjacent to St. Vincent's, and the place where many out-of-area patients stay for awhile between their release from the hospital and their return home. Best wishes as your surgery date approaches.

Catherine (JerseyGirl2)

[Kathy M]

Sounds like you've picked the best of the best places to have your surgery and that's so important!  My tumor was large, too, and I was diagnosed in mid November, had successful surgery two weeks ago.  That was the longest 2 months of my life - lots of tears, despair, and fear.  But - although this is not a chosen journey, it's here.  Gotta get that out of your head and get past it so you can continue living and enjoying your life.  I drew tremendous strength from the folks here who have lived to tell of life "after" and I also have a great supportive family.  I'm hoping that you stay strong, get through the gloom and doom feelings that you are absolutely entitled to (this is scary stuff!), and find your resolve that will swoop you over to the other side of this hurdle.  I'm glad your surgery is scheduled so quickly and that you found this group.  Good luck - you're in my thoughts and prayers!

Kathy

[Jim Scott]

Bdsgurl:

I'm a little late to the thread so I'll simply add my welcome and regret that you have to deal with an acoustic neuroma. 

Well, maybe a little bit more.    If it's any reassurance, many young mothers, like Katie ('krbonner') have successfully dealt with this challenge and I'm sure you will, too.  ANs are almost never malignant and you have a better chance of winning PowerBall than dying during the removal operation.  Your fears are perfectly natural but once you examine this situation via research, although there are risks and valid reasons for caution and concern, it really isn't quite as scary as it may seem, initially.  These message boards are populated by folks who've been where you are, now: scared and feeling somewhat overwhelmed.  We all got through it, albeit with some deficits in some cases, many of them mild or transitory, but the takeaway from this is simply that we got through it.  You will, too.  We're like a family and want to support you in any way possible.  Please let us. 

Jim

[arkansasfarmgirl]

I got your PM and will be calling you later.  But I thought I would write some things down too, so you can reference any of it if you need to.

I had surgery with Dr Brackmann at St Vincent on Nov. 19 to remove a 4.5 cm tumor.  It took 11 hours.  Dr Brackmann is wonderful, and he and his team did an awesome job on me.  I turned out to have a complication beyond the tumor itself--it was on my facial nerve--so they had to cut and graft my facial nerve and that is going to take a long time to heal.  But if it wasn't for my face not working right, and my hair growing back, this whole ordeal would seem like a bad dream.  I feel really good and normal and have for probably the last 3 weeks.  

My baby was 6 weeks old when I was diagnosed, and I also have a 3 year old.  I'm 34, btw.  During the 6 weeks between diagnosis and surgery, I rented a hospital grade pump and pumped like crazy to get a stash for while I was unavailable to nurse her.  I also found a formula that agreed with her, so that we could supplement with that to make my stash last longer.  God blessed me with a baby who didn't seem to care where the food was coming from, so long as she was fed, so that helped the situation.

They make you take an anti-viral that contra-indicates breastfeeding for 3 days prior to surgery, so be prepared for that.  After I arrived, I talked to EVERYONE about my situation and asked for their assistance.  Rita, Jody, and Becky were super nice and super helpful and really went out of their way to smooth my path.  The nurses in ICU were awesome and very accomodating.  My husband did the pumping for me while I was "out of it".  He made the walk from Seton Hall every 3 hours around the clock to pump me.  I won't lie, it was hell on both of us.  Despite our best efforts, by my last day in the hospital I had all but lost my milk, between the drugs and the stress my body was under.  I talked to the drs about my situation and my wishes to get the baby back on the breast asap after my discharge.  I was doing well enough that I was able to be discharged without any meds being required on day 5.  6 days after surgery, I started transitioning the baby back to nursing.  The first day I was able to feed her 3 times, but had to use both sides each time to fill her up.  By 2-3 weeks after surgery, I was feeding her 6 times myself and supplementing 3 times.  Now that I'm 2+ months post surgery, and she is 5 1/2 months, I am still giving her formula twice a day, just to help take some of the stress off of my body, but I *could* be nursing exclusively if I wanted to.

So many people told me before my surgery that I needed to forget trying to nurse my baby, that my health was more important.  Well, yes, that is true BUT I knew for my own piece of mind that I had to try.  It was by the grace of God and the skill of my surgeons that I didn't have any other post-surgical complications that would have prevented me from re-lactating, especially considering the size of my tumor.

My 3 year old has had a few issues because of all this.  He stayed with grandparents while we were in CA and I was away from him for 2 weeks, after never having been away for more than 4 days prior to that.  It was difficult for both of us, and I missed him like crazy.  He has said some things since then, indicating he is afraid of it happening again and it breaks my heart to hear it.  But he is starting to relax around me again, finally.  He offered to hold my face up for me, so I can smile...  :-)

We as mothers can't help but worry about "what if".  What if I die.  What if I come don't come through this whole and cannot care for my children.  What if they resent having a mother who is not quite 100% what she used to be.  I guess that's where faith comes into play.  I did everything I could to find the right doctors and help myself heal, and trusted in my faith in God that it would be Ok.  In a way, this has been a blessing, because my priorities have been confirmed without a doubt, and I have spent more time (and will continue to for quite a while) at home with my little ones, instead of hauling down the road to barrel races.  I have more appreciation for being alive.  So what if I can't smile and my eye doesn't blink--I am here to mother my kids.

I hope this helps.  I'll be calling you when I don't have munchkins distracting me.  It took me almost 2 hours to type this.  LOL

Vonda

[Kaybo]

Bdsgurl~
You have already received some wonderful advice and from people that are closer to it than I am.  I am 38 - I had surgery when I was 25 & had no children yet.  Since then, I have gone on to have 3 girlies who are now 11, 7 & almost 6.  It seems like yesterday when I was nursing.  I did have a time that was not attributed tot he AN, where my milk started to dry up.  I found this tea, called "Mother's Milk" at the health food store (I think it is by Home Remedies).  I have seen it at some grocery stores that have a better selection of those kind of products.  It helps so much - I would even start drinking it now to "boost" your production so you can store up all you can.  Please feel free to PM me - I would love to chat with you. if you would like!

K

[msmaggie]

 Of course you are scared!  You have just been told that you have to have surgery very soon for a condition that you have probably never even heard of!  All of us were dumbfounded by the news when we were diagnosed.  My babies are all grown, but you are getting some excellent advice from people who have stood in your shoes, and you are going to a medical group that is highly revered in the world of AN.

Breathe deeply, find out as much as you can about your condition, and stay in touch.  There are some amazing people congregated here in this forum.

Priscilla

[MAlegant]

There's not much to say that hasn't been said.  I was also terrified.  Even knowing that my odds of dying were slim, I think I was very afraid of being somehow unable to resume the life that I had built for myself.  And my son was 20 at the time but he cried like a baby in my arms at the thought of losing his mom.  Boy was that ever tough. My husband told me that I was pretty much his life and that sent me over the edge.   In the end however, I am fine, and both my husband and son appreciate the gift of life and how much we mean to each other.  An amazing silver lining.  You will be fine.  I was home in 2 days but I couldn't have taken care of anyone for at least the first week.  So you will need help.  Ask someone who is dear to you. Again, you will be fine.
Best,
Marci