Author Topic: I've made my decision... now it's time to bite the bullet  (Read 7528 times)

marymomof3

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I've made my decision... now it's time to bite the bullet
« on: February 14, 2008, 06:21:42 pm »
Hi all!  Let me tell you that since I've been diagnosed with AN this has been my full time job.  I just decided to stay home since I had my third, and now this became my job! ha ha ha! At least I still have my sense of humor.  So I'm generally certain that after my research I will have go the surgical route, but it's tough to actually make the call and schedule.  I also haven't discussed this with anyone other than my husband and my parents.  I need to get comfortable with discussing this.  Someone else recently posted this same concern.  I have so many commitments that I know I have to inform people.
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

OMG16

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Re: I've made my decision... now it's time to bite the bullet
« Reply #1 on: February 14, 2008, 06:57:47 pm »
I think that it is great you have decided on a treatment for yourself.  It is a full time job learning about all of this and can be so overwhelming to say the least.  If you need a sounding board while trying to figure out what and when to tell everyone just let us know and we all will be happy to help you out.  Kisses to your forehead.  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

lori67

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Re: I've made my decision... now it's time to bite the bullet
« Reply #2 on: February 14, 2008, 07:26:19 pm »
Hi Mary.  I know what you mean - I have 4 kids and we are pretty new to Nashville, so we don't have any family in the area.  The scheduling was the hardest part.  Making sure everyone is where they need to be without me here to play air traffic controller.  It all seems to come together in the end.  Thank God for post-it notes, which were left all over the house with directions for everything!

I hope your scheduling goes as well so you'll have a few less things to worry about.  You should only have to worry about YOU for a little while!

Good luck to you!  Your kids should have you back on your feet in no time - whether you want to be or not!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: I've made my decision... now it's time to bite the bullet
« Reply #3 on: February 14, 2008, 09:29:18 pm »
Mary~
I have 3 precious girlies and "stay home" even though I am not home much!!  I would love to talk to you about life w/ kids and AN if you would like -- please feel free tp contact me!
Good Luck w/ all your research and dealing with this on your own time scale!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: I've made my decision... now it's time to bite the bullet
« Reply #4 on: February 14, 2008, 10:56:29 pm »
Mary -

researching and decision making are definitely very time consuming and difficult processes - it's impressive that you've kept your sense of humor  :)

As another mom who's had AN surgery, I totally agree with Lori's comment on scheduling.

Although my children aren't "little" (going to be 12 on Leap Day!) it was extremely important to me to keep things as normal as possible for them while I was in the hospital and at home recovering from my surgery.  As a single parent (my twins have 0% involvement with their father), I stressed a lot about how things were going to work out.

About a week before my "big day" I sat down and made numerous lists for my "caregivers" (my mom and my sister) who literally moved into my house and took care of everything I either wasn't there to do myself - or simply couldn't do for a while post op.  My lists included things like a calendar of each child's schedule; details of their normal routines; maps/directions to unfamiliar places; important phone numbers - including neighbors; what day the trash went out; where I store the extra cat food; etc.  Basically anything and everything that would make life less stressful for my children and keep my household running smoothly.  My mom and sister really appreciated the lists because they had a handy reference guide and the lists also helped ease my mind and let me concentrate on my recovery.

Don't hesitate to ask friends and family for help and delegate specific tasks to them if you can.  The morning of my surgery I gave my dad my cell phone and a list of people to call once I was sent to recover in the ICU.  He was thankful he could do something productive for me and it was one less thing I had to do once I felt up to it.  You'll need extra help for a while (I was surprised how fatigued I was post op) and you'll find most people are more than willing to do what's needed.  Try to get a good support system in order prior to your surgery, it will make things easier for you, your children, and your husband during your recovery.

Best of luck,

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

candtlaw

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Re: I've made my decision... now it's time to bite the bullet
« Reply #5 on: February 15, 2008, 07:37:33 am »
Hi ladies.... also a Mom of 3... two girlies and a little 2yo terror boy! lol, he is really a sweatheart.... Just thought I would say hello and I think that is is AWSOME that you have made a decision. Would love to hear a few tips about Mothering with a AN. I can really tell that it affects things here with the noise level, even the loud laughter which is so hard on me and sad when I lose it ocassionally. Have you shared any of the info with the kids? I have not with my 8 year old but my 13 year old I try to include in most all........... I had ck btw as the recovery time was a issue for me. Noone to take care of the kiddos but me on a daily basis..... :(
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

Kaybo

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Re: I've made my decision... now it's time to bite the bullet
« Reply #6 on: February 15, 2008, 08:03:12 am »
Good Morning!

My hat is off to you all.

Jan~ You must be WonderWoman to do all that w/ twins and by yourself.  I don't even know you & I think you are the BEST!!  My hubby does so much for me & still picks up a LOT of slack that most men don't/won't do. 
Cyndi~ What a trooper -- we need to find you some help!
I was "fortunate" enough to not have kids WHEN I had surgery -- I just got pregnant too soon (in my opinion) AFTER I had surgery.  I have always said that I was glad I didn't have kiddos yet (even though I was dying for babies of my own!) since I had to have someone care for me 24/7 for a LONG time -- my recovery was MUCH different since I had a stroke too.  I would definitely think that the scheduling would be the key.  I have had several operations/procedures since I have had kids (NOTHING like the AN surgery!) and that is the most important.  The more detailed you are for the caretaker BEFORE, the easier it will be for them.

Maybe we should start a MOMS GROUP, anyone interested?
Have a great weekend!
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Denisex2boys

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Re: I've made my decision... now it's time to bite the bullet
« Reply #7 on: February 15, 2008, 11:16:24 am »
Mary ...... me, yourself and Elderbirds can ALL hold hands and go through this together ..... we all have young children so our experiences are a lot the same.  contact me if you want ..... I made the 'decision' last week to have microsurgery as well - and I am awaiting 'the call' - I have no idea when it will come - bu probably within the next couple of months ..... YIKS!

If you want my MSN is listed in my profile - if you ever want 'real-time' chat.

CUDO'S to you for making this hard, well thought out decision!  It is a different kind of anxiety now ....... but I do feel a sense of relief as well ......

((((HUGS))))!
- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

krbonner

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Re: I've made my decision... now it's time to bite the bullet
« Reply #8 on: February 15, 2008, 02:00:55 pm »
My sons were 4.5 and 1.5 yrs when I had my surgery (the little one turns 3 next week, and my older one will be 6 this spring), and I was a full-time mom.

The lists are exactly what you need.  My mom moved in with us, starting about 4 days before the surgery so the kids could start getting used to her.  I gave her lists of potential playdates, directions to parks, favorite foods, schedules, and anything else I could think of!  And a very amazing group of friends provided dinner for my family every other night for almost 6 weeks - that was the best thing ever!! 

And while I know my recovery was pretty quick, I was taking care of the kids on my own during the day at 4 weeks post-op (not by choice, but that's a long and sad story).  I could do it, but I'd collapse into bed as soon as my husband got home.

If there's any way I can help or offer suggestions, please let me know.  Post-op, the AN hasn't really affected my interactions with the kids (though they know they have to look at me and not mumble when they speak to me).  Sometimes I have to tell them to lower the volume, but I think that's true for any mother - especially a mom of boys!   ;)

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

elderbirds

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Re: I've made my decision... now it's time to bite the bullet
« Reply #9 on: February 15, 2008, 08:52:32 pm »
Hi all,
Thought I'd chime in too, I also have 2 boys at home (6 & 9).  I too have decided on surgery and am awaiting "the call" for the date.  I am trying to get thing, s in order, and hopefully have surgery before little league season is in full swing.  I work full-time outside the home. So I have only told those that do the scheduling at work, my husband and our parents.  I will tell others when the time gets closer, and only those that "need to know".  I am thankful that my parents and mother-in-law live locally and are all retired and are willing and able to do what ever we need.  I'm a little nervous being away from the boys for that long but I know they will be fine.  I will tell them right before surgery, they've seen my husband recover from knee surgery, but it will be much different with mommy sitting on the couch all day!  they notice every bandaid on me, so I'm not sure what they'll think.  they know I have a problem with my hearing and that I've been going to the doctor to see if they can fix it.   Did anyone have their kids visit them at the hospital?  I really don't think I want ANY visitors, let alone the kids, but we'll see how things go.  Glad to know I'm not alone .
Hope

candtlaw

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Re: I've made my decision... now it's time to bite the bullet
« Reply #10 on: February 15, 2008, 10:13:41 pm »
Definatly interested in a Moms group........ you ladies all sound amazing. We just do what we have to do I guess and find some sort of inner strength as we go along ;) Gl to you ladies waiting on the call for the surgeries. I was way too chicken. 

My oldest is 13, girl and then I have a 8 year old gril and a 2yo boy........... Glad to hear I am the only one who has to remind the kids to look at me and speak clearly! I dont have any recordable hearing loss, they called it miniscule at my last audiogram but the ringing is just so loud and I swear she mumbles! lol............  The volume of it all, I just have to close my eyes, cover my ears and get them to stop whatever it is they are doing. I hate when they all try and talk at once. Helping with homework has also become more difficult.... I feel relaly stupid sometimes but the things they now are learning in 3rd grade, geesh! lol.... I just have a hard time following...... 

I am also available by email and would love to stay in touch regularly if just to lend a ear.
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

lori67

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Re: I've made my decision... now it's time to bite the bullet
« Reply #11 on: February 16, 2008, 10:11:05 am »
My kids came to see me at the hospital once I was out of ICU.  One was 4 and one was 9 months at the time.  I wasn't sure how the 4 year old would be with Mommy having a giant bandage on my head, but once she knew I was still the same ol' Mom, she was fine.  She's a lilttle mother hen anyway, so she would hold my hand on my walks aound the halls and quickly learned that if we made it all the way to the nurses station, they would give her an ice pop for doing such a good job!  When we got home, she would have to look at my boo boo every day to make sure it was okay and she'd yell at me any time she saw me scratching!  It really itched!!  Now she comes to PT with me and holds my hand when the therapist puts the surface EMG electrodes on my face - she rubs my hand and says "it's okay Mom..".  It's funny.  My 9 months old didn't seem to be too bothered by the whole thing.  I guess at that age, as long as the food keeps arriving and someone changes your diaper, life is good.

When I was about 4, my Mom had a severed radial nerve in her arm and is partially paralyzed.  Back then, they didn't know as much about nerves and such, so she was going to PT, OT, accupuncture - anything at all.  I used to go with her and I think that's why I decided to become a PT when i grew up.  So, who knows, maybe my daughter will be a brilliant brain surgeon!  Or drive an ice cream truck....

I'm sure you'll want visitors once the time comes.  Your family gives you a good reason to get back to semi-normal.  I think it's good for kids to see that Mom is only human too.  We all spend so much time keeping our aches and pains to ourselves so our kids don't know anything is wrong - it's probably good for them to see that sometimes we need help too.  I think it helps to teach them to be compassionate towards others.  It's amazing what we will do to teach our kids these life lessons, isn't it?  There's gotta be an easier way than brain surgery!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: I've made my decision... now it's time to bite the bullet
« Reply #12 on: February 16, 2008, 10:18:26 am »
I have always said that the kids that were the students in my class the year I had surgery would, by far, be more compassionate and understanding of otheres as adults!!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: I've made my decision... now it's time to bite the bullet
« Reply #13 on: February 16, 2008, 07:12:33 pm »
The only visitors I had in the hospital - other than my docs, who came by faithfully each day - even the weekends! - were family and I was glad to see them.  It gets pretty boring when you're not sleeping off the anesthesia and it's always nice to have a family member help you walk the hallways or help the busy nurses out by getting you ice or juice.

It was tough being away from my kids the 5 days I was hospitalized.  They came to see me in the hospital 2 days post op.  My parents planned on bringing them the day following surgery, but we decided to wait an extra day.  Although I still had the pressure bandage on my head, I looked fairly normal so they weren't upset - just relieved to see me.  And I was glad to see them - it gave me a lot of incentive to get out of the hospital and home again.  I also hung pictures of my kids, and all the get well cards they made me, on the bulletin board in my hospital room.

It's hard to decide when to schedule the surgery.  I decided it would be best to schedule mine before school let out for the summer.  That way the kids were wrapped up in their normal routine and activities and didn't have a lot of time to sit around worrying about me.  I did talk to their teachers and explain what was going on at home so they could help the kids deal with any anxiety or emotional feelings that might come up the day of my surgery.  Having the kids in school during the day also helped my mom because once she got the kids off to school, she could be at the hospital with me.  (You know what they say, you never get too old for your mom to stop treating you like a kid  :))  My sister would pick the kids up from school and spend a few hours with them until my mom returned; then my sister would go home to her husband and kids.  My dad also helped out;  it really was a group effort.

A mom's group is an excellent idea - but I have to warn everyone, I don't have a lot of time for communication other than email - and usually I do that late at night or early in the morning when the kids are still asleep, or during my lunch hour at work while I'm eating at my desk.   I have a boy and a girl - both will be 12 on February 29th - although my son is older than my daughter by 17 minutes - and loves to remind his "little" sister of that fact  ;D

Kaybo, it's so kind of you to say I'm the best.  Most days I don't feel like I am, but I give it my best shot.

Jan 


Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

krbonner

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Re: I've made my decision... now it's time to bite the bullet
« Reply #14 on: February 16, 2008, 07:35:23 pm »
You'll know if it's right to have your children visit in the hospital.  That's a very personal decision.  My kids never did (4.5 and 1.5 a the time), by my choice.  Not only was I not up to it, but my oldest (at the time) was a very timid and anxious preschooler.  Seeing me in the hospital not acting like myself would not have been good for him.  It was hard enough on him when I came home looking strange and acting different!  LOL!  My younger one even refused to have anything to do with me until the big bandage came off!   :(

If you feel like your kids can deal with visiting the hospital, or even want to, then do it.  But if you think it's too much (especially for little ones), then that's okay too.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)