ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Mo Ro on July 25, 2008, 03:01:44 pm
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Hi everybody!
This is my first post although I've been taking advantage of reading everyone else's post for a couple of months now. I was diagnosed with AN May 8, 2008. I spoke to several doctors at House, Stanford, UAB, and Duke and I've finally decided to have my surgery at Duke on October 7th. Well, they decided the date - I wish it were much sooner. I'm just ready to have something done at this point.
My symptoms have been dizziness, tinnitus, distorted hearing, and headaches - not too bad considering I have a tumor growing in the old noggin. My biggest concern is for my 2 year old son. I am a stay at home mom and he is very accustomed to having his mom by his side for every mind blowing adventure. I'm not sure what our lifestyle will be like post-surgery. It's already changed a good deal. We rarely leave the house anymore because I can't really stand the noise in public places and I never really know when a bout of dizziness may hit and I don't want to be driving my son around when that happens.
It could be worse though, I'm going to be around to watch my son grow up and maybe my husband and I can give him a baby bro or sis one day so I know how fortunate I am.
Speaking of my son, his nap has ended earlier than planned (hoped and prayed for maybe more accurate) and I have to run. I get dizzy being on the computer too long and my only chance to get on happens while my son sleeps so thanks in advance for the wonderful welcome and replies because who knows when I'll get the chance to check in again.
I wish everyone the best!!!
Mo
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Hi, Mo Ro:
Thanks for posting and welcome to the site and the forums!
As the mother of a 2-year-old, you'll definitely have to make some adjustments, post-op. You'll need some kind of help for a few weeks, be it friends, relatives or paid help. Your husband will need to step up, too. I know you'll be receiving many welcoming posts and suggestions so I won't attempt to cover everything in this post, except to express my regret for your symptoms and the offer of my hopes and prayers for a successful surgery and a full, rapid recovery.
I've added your surgery date to our Treatment Calendar. http://my.calendars.net/AN_Treatments (http://my.calendars.net/AN_Treatments)
Jim
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Mo Ro -
glad you have a date (thanks, Jim, for putting it on the calendar).
I'm a single mom and I had surgery last year. Although my children are older than your son (they are both 12) I found that help post op was crucial. Even if your side-effects are minimal, you will not be back to "normal" for anywhere from 4 to 6 weeks and perhaps beyond that. I don't want to scare you - you won't be totally incapacitated or anything - but recovery does take time and you'll find you need lots of rest. IMO you should enlist all the family members, friends, and/or neighbors you can. In general, you'll find that most people are more than happy to help out.
There are many parents on this forum who can give you great advice - and there are lots of posts about this already on the forum, if you find the time to search for them.
Jan
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Hi Mo Ro.
I had surgery in March and I'm a mother of 3. I have a 7, 5 and 1 year old. I felt the same as you do. I think I was actually more worried about my kids than myself. But here's what I've learned.... they adjust!! My kids were great throughout the entire thing. I knew was 7 year old was nervous when I told her. I kept it simple, basically told her that my ear was bothering me and I had to go to the hospital so the doctors could fix it. She followed that up with asking why I had to go to the hospital and not just the office.... I really hadn't expected that, but I managed to talk my way out of it.
My 5 year old is a mama's boy and he was most bothered with the fact that I was going to be out of the house... but they were going to my parents so we treated that like a mini-vacation for them.
You will definitely need help post-op. I was never left alone for about 3 weeks. I couldn't pick up the baby for about 3 weeks. It was a humbling experience for me in the beginning, but then I got over it and accepted the help.
Your son is only 2.... he will adjust and I'll bet he'll actually forget that you had to go through this.
Mary
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Hi MoRo,
So glad you posted. I agree that it is natural to be more concerned for our kids that ourselves. Your little one will adjust and the good news is since he is little he will have little memory of the time the "mommy was sleeping a lot". You will need to enlist family and friends to help and please have someone set up a Care Calendar for yourself. Go to www.carecalendar.org I am four weeks out from surgery and I have had people come every other day to bring meals which is great. You can also enlist people to help with your son through the Care Calendar.
Julie
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My boys were 4.5 and 1.5 years old when I had my surgery. The key is to make sure you're not left alone with your son for the first few weeks. You need to focus on resting and your recovery, and you simply can't do that if you are taking care of a little one.
My mom moved in with us to take care of my kids, and I had an amazing group of friends that organized a dinner brigade so we had a meal brought to us every other day for six weeks. That made all the difference in the world. By the time I was alone with my kids for a few hours after my mom had to leave (around 4 weeks post-op), it was okay - though exhausted by the time my husband came home!
Don't be afraid to ask for help. If you aren't able to devote yourself to your own recovery those first few weeks, the whole process lasts a lot longer.
Good luck!
Katie
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Hi Mo Ro
Wow. Do you think you can put off your surgery until your son is four? ;) My daughter is 25 now but those memories of her when she was two are still branded in my brain. I have nothing more to add than what the others have said -- make sure you have plenty of support -- both short term and long term. Make sure that whatever the situation is, you get plenty of uninterupted rest. I wish you the best.
David
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I just want to echo what others wrote - make sure you have LOTS of support before heading for surgery. Everyone heals differently but I stayed with my parents in a quiet environment for five weeks before heading home. Of my five boys (then ages 5 - 14), two were away from home for an extended period of time during the day when my hubby was at work. It took me months before feeling able to cope, but that is also probably due to the fact that I have five boys :-) plus my balance nerve was cut on the one side to get at the tumor so I basically had to relearn how to walk again. Well, it's seven years later....I still have five boys at home and very much able to cope!! All the best with your surgery - behind the clouds the sun IS shining.
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I can't add much to what all these other folks have said, so will just add my best wishes. Try to find some peaceful times in the next few months to relax. And, definitely line up some help for post-surgery!
Debbi
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Hi Mo,
I had AN surgery, and then vestibular retraining, at Duke. You'll be in good hands. If I can answer any questions about that, please let me know. There is also a local AN support group that meets usually once a quarter. If that interests you, I can email the contact persons email address.
I agree with Katie, you'll need help with the little one for the first few weeks. And it will be important for you to get your rest.
Regards,
Rob
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I am so glad I finally made myself post. It is wonderful to hear that you can survive this even with little ones that can beat you down under normal circumstances. :)
Hopefully, I've got the babysitting covered. My husband will be off the first two weeks that we'll be in North Carolina and my mom is taking off two months - God bless her! And hopefully my dad and little sister will be able to lend a hand when needed.
David - you got the whole two year old thing absolutely right. I know I threaten to go back to work at least once a week just so I can get a break and I'm sure I bring up getting my tubes tied at least once a day!
Thanks again to everyone that has responded. My husband's way of dealing this situation is to not really discuss it and my parents are pretty stressed by a number of things so I try not to add to it. So I really do appreciate this outlet and I have only the best things to say about everyone involved in it.
Rob- who did your surgery? Dr. Tucci, Sampson, and Fukushima are doing mine. I would love to hear about your experience.
Thanks again!
Mo
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Mo -
sounds like your family is going to be a great support system :)
You can - and you will - survive this.
Jan
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Hi Mo,
Congratulations on having a date for your surgery! I can't wait to get to a point where I've made all the decisions and have a date of my own for treatment. October does seem far away, I know waiting will be difficult!
I was just diagnosed with AN several days ago, and am in the beginning stages of researching doctors and hospitals. May I ask why you chose Duke? I was very excited to see this, as I live in NC, and Duke would be really convenient for me. I'm prepared to go wherever I need to go in order to receive the best treatment, but any insight you can give as to what lead you to choose Duke would be greatly appreciated!
Thanks,
Lisa
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Hi Lisa,
I decided to go with Duke because of Dr. Sampson. He made me feel totally at ease. I asked him loads of questions and he answered every one entirely. He gave a me more information than any of the 8 or 9 doctors I spoke with before I met with him and as crazy as it sounds when I met with him I really felt like he was who needed to treat me. I must admit I was pretty overwhelmed and emotional (which I still can be at times) but after I met with Drs. Sampson and Tucci I have been much more at peace with the situation. I would rather not have to deal with this thing at all but I feel like I have really competent and compassionate doctors who are going to take care of me.
If you would like I can give you more information via email or I don't mind to give you a call. Whatever you are more comfortable with. Just let me know.
Best of wishes,
Mo
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Hi Mo and welcome.
I'm glad you have a date and a place for your surgery. I can understand being worried about your son - my youngest were 4 years old and 9 months old when I had my surgery. I was more worried about them than I was about myself. But they did fine. I was fortunate that the 4 year old was old enough to do some things for herself and the 9 month old wasn't too mobile yet. But kids seem to handle these things better than we expect them to.
My surgeon just recently transferred to Duke, so I have to believe they have a very good program there for him to leave Vanderbilt to go there. He's not one of the ones you mentioned, but for some reason I seem to remember him saying he'd be doing more teaching there. Anyway, it's good to have that feeling of peace that you're in the right hands.
I completely understand your husband's way of dealing with this. Mine is the same way. It's very frustrating at times, but I guess we all do what we have to when we are forced to deal with this kind of stuff. That's a good thing about our "forum family" - they're always here and always willing to listen.
Lori
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Hi Mo,
I'm Jeff and I've NF2 and have had 4 AN surgeries. My daughter was 2 when I was diagnosed and had my 1st surgery. She is now 8 and has been through 4 of them. I won't say that it has been easy, but I can tell you that I think kids adapt well to change. I wish you the best.
Jeff
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Jeff:
You've certainly been through a lot and in her own way, so has your daughter. Your advice is sound and based on experience, not theory, so it is appreciated and welcomed. Kids really are adaptable. Your daughter proves it. :)
Jim
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Hi Jim,
Thanks for the kind words. Unfortunately, AN surgeries have become somewhat common within my family. We have been through 8 of them plus my ABI surgery. And upon reflection, resilient is how I would describe kids. They are amazing. I'll never forget the first time my daughter smarted off to me using sign language. :D Although I wasn't pleased with what she said, I had to laugh and realize that kids find a way to work with a situation.
Take care,
Jeff
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Jeff,
Kids do find a way, don't they? :D I think talking back to Dad in sign language warrants a good washing of the hands with soap! Sure beats getting your mouth washed out with it anyway! :D
Sounds like your whole family is quite resilient.
Lori
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Mo,
It's surprising how children of various ages react to this. My 20 year-old surprised me by being incredibly supportive and strong, although the older they there, the more they understand the gravity of the situation. To your point, your little one won't remember much of this, and if you have good support you will be able to spend some quality time with your kids. October 7 is a long time away but it does give you the luxury of taking your time as you plan this for your family. Your husband is just processing all of this. Likely he will be a source of great support. Good luck.
Marci