Author Topic: Preparing for surgery  (Read 13382 times)

Heidi in Omaha

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Preparing for surgery
« on: August 11, 2011, 07:38:17 pm »
First of all, I can't tell you how THRILLED I am to have found all of you! It is very encouraging to read advice and comments from people with first-hand experience! It's a bummer to have the AN and to be facing surgery, but I am amazed at the information and support I will be able to find here. AWESOME!

I am 30 years old and have a wonderful husband and three children ages 7, 6, and 2. I first noticed some hearing loss this last spring. An MRI revealed my acoustic neuroma in June. After more hearing and balance tests, my doctors recommended surgery. I have met with the surgeons and feel very comfortable with their experience and capability. However, I can totally relate to the discussion thread entitled "freaking out." My surgery is also scheduled in September, on the 16th. My mom and dad are going to be staying with my family during my surgery and hospital stay to help with the kids, and they are able to stay for another week or so after I get home. My mom is a retired nurse, so I know I'll be in good hands at home!

Any other advice on how to prepare myself for the surgery? Any suggestions on what to bring to the hospital? Also, does anyone have any further bits of wisdom to share for the recovery process? I am beginning to realize that each recovery seems a bit unique. Since I have apparently lost 100% of my balance on the right side (I never would have realized, the human body is amazing!), I am hoping that means that my brain will not have to compensate very much after the surgery. Any advice is welcome! I feel so blessed to have found all of you!


Dolwin

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Re: Preparing for surgery
« Reply #1 on: August 12, 2011, 03:01:01 pm »
Those are some great questions, Heidi!  I hadn't even thought to ask what I might need in the way of preparation for surgery and the hospital yet, and mine is scheduled for August 25th!  I'll be keeping an eye on this thread to see what some of the resident experts recommend.   :)
1.4 x 1.7 x 1.2 cm AN diagnosed 6/11.  8% hearing left in right ear.  RetroSig surgery set for 8/25.

Jim Scott

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Re: Preparing for surgery
« Reply #2 on: August 12, 2011, 03:16:08 pm »
Hi, Heidi - and welcome!

Thanks for the kind words about the ANA website discussion forum.  I'm so pleased to learn that it has been a help to you.  We know what the AN diagnosis means and that finding support from those who have 'walked in your shoes' is always appreciated. 

You seem to have your surgery well-planned and are confident about your decision, the doctors and the facility, which is good news.  As for preparing for surgery, there are a variety of opinions on that.  You'll get some on this thread, I can assure you.  I did nothing to prepare for surgery and did just fine.  No complications, home in 5 days and recovered rapidly.  However, it makes sense that the better physical condition you're in at the time of the surgery, the better it is for your recovery.  If your brain has compensated for the loss of the hearing nerve's capability, balance shouldn't be a huge problem.  It wasn't for me - but I did have to 'work' at regaining my balance and even today, five years later, it is not 100% of what it was prior to the manifestation of my AN.  I call it about 85% - and quite serviceable.  You would never know that I'm working with only one balance nerve. 

As for 'what to take to the hospital', I'll leave that to others.  I brought very little and didn't need much.  Many claim Chap Stick is a vital necessity in the hospital - but I never needed it.  The surgery takes a lot out of you (mine was 9 hours) and you'll sleep for most of the first 2 or 3 days, post-op.  Fatigue is a likely result of AN surgery - but it passes, eventually.  Some suffer from nausea (from the anesthetic) and that can be tough, although the hospital will give you medication to subdue it.  I was fortunate to avoid the nausea.  I had told the anesthetist that I got nauseous from previous administrations of anesthesia and he responded by adding some kind of anti-nausea ingredient to the anesthesia - for which I was grateful.  Normal bowel functions can be disrupted but, in my case, returned to normal within 48 hours of returning home to a normal schedule and regular diet.  If not, there are medications that can help restore normal function.  I'll leave further suggestions to others and wish you a very successful, uncomplicated surgery and a splendid recovery.     

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Preparing for surgery
« Reply #3 on: August 14, 2011, 09:37:07 am »
Hi, Heidi  ;D

I'm thrilled you found us, too and you are right we are awesome  :D

I found that once I made my decision to have surgery that I had a strange sense of peace and calm.  I had complete and utter faith and trust in my doctors (neurotologist and neurosurgeon) and I just wanted to get the surgery over with so I could get on with my life.

I'm one who took way too much to the hospital.  I never got out of the gown they gave me, but found slippers (that don't "skid") and a bathrobe very valuable for when they get you out of bed and have you walking down the hall.

I brought some books, but experienced double-vision (some do, some don't) so I never unpacked them.

I brought pictures of my kids (two, age 10 1/2 at the time) that I tacked up on the bulletin board at the foot of my bed.  I discovered that the pictures were a great inspiration in my recovery.  I wanted to get home to my kids.

My best advice when you get home is to just listen to your body.  As you say everyone is different, but most of us experience tremendous fatigue and simple things that you normally do - like showering - will take a lot out of you for a few weeks.  Patience is key and if you're like most of us moms you are used to doing it all.  Try to get over that while you are recovering.  My mom, dad, and sister helped me out during my recovery - my mom even moved in with me and my kids for about 6 weeks - and it was wonderful having the help.  I've always prided myself on being independent and self-sufficient, but soon learned that I could and should rely on others.  Don't turn down any offers of house cleaning, child care, or meal preparation.  You'll find that most people are more than willing to help you out - you just need to learn to ask for what you need and to take them up on their offers to help.

Good luck with your surgery and recovery,

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

schmidtkat

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Re: Preparing for surgery
« Reply #4 on: August 18, 2011, 03:53:57 am »
Hello Heidi,

I'm new to this forum as well. I'm from west central Iowa, about 2 hours from Omaha. My surgery is Sept 2nd. Many of the thing you mention in this post sound very familiar...diagnosed this summer, kids at home, preparing for surgery, reading these posts in search of support, have been told my good side is already significantly compensating for my bad (left) side, and have a wonderful support system with family & friends...and also feel truly blessed to have found this forum for ANers.

It amazes me when I find posts such as these which I can relate to. You've written and asked so many things which are on my mind at this time as well. So I'll continue to watch your thread and responses.

Sending you well wishes and prayers for a successful surgery and speedy recovery.

Kathy from Iowa


CHD63

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Re: Preparing for surgery
« Reply #5 on: August 18, 2011, 06:41:39 am »
Hi Heidi (and Kathy) .....

You have already received good replies to your questions.  For me, I like my own toothbrush and specific toothpaste so I took those two items, as well.  The main things I found useful were the lip balm, my own robe and non-skid slippers.  My first surgery three years ago, I took a book, but the double vision prevented it from being useful.  The second surgery three months ago I had no double vision so I had my husband bring my IPhone to me after the first day in ICU and I used it at night when I could not sleep from the steroids (not for phone calls  ::) ;D ::)).  I would not recommend doing that unless you are going to keep it in the bed with you, like I did.  Following my first surgery I purchased a dual channel, single-side ear bud for listening to the IPod and that worked well post-op also.

Like Jan, I never used my own gown or pjs in the hospital.  Definitely bring tops that have big necks or button down the front for after discharge.  Normally the big bandage comes off within 36 hours, but you still do not to pull anything tight over your head.  I also brought a couple of scarves to wrap around my head ...... mainly because it was cool in California in May and the shaved area (very small usually) was exposed to the cool air otherwise.

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: Preparing for surgery
« Reply #6 on: August 18, 2011, 07:07:45 am »
Heidi and Kathy.      I always have took some pj's along for past my surgeries. Made me feel more normal.      I haven't heard it said much but I was always cold in the hospital past surgery.   The ted sox on helped with that some.   The lip balm is a big help.     My own robe but have always been given slipper socks.   I also discovered at Iowa City that if one has some dry eye that their day drops are not the heavy type and take my own Refresh Liquigel.     They did use the heavy gel at night.         I took my solitare game which I did use some but not alot.        TV was the occ way to help boredom but not up to much else.   I am not a big tv watcher usually.      I took a pic of the grandkids for my later surgeries (due to having NF2 and in time 3 tumors)       Some face cream also and facial wipes for cleaning the face but never even wanted any makeup or took any.           For those with glasses an old pair with the bow off on the AN side to use when have the bandage on.             My taste was always off and found my usual 7 up did not taste right and ice water was the best.      I was always on a fluid restriction so one does not drink a huge amount.                            I hope it goes well for all those with surgery soon.            Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Heidi in Omaha

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Re: Preparing for surgery
« Reply #7 on: August 21, 2011, 10:47:25 am »
Thanks everyone. Your feedback is informational and encouraging. I'm not at all looking forward to this process or the recovery, but I am confident that surgery is the right option at this time. My retro-sigmoid is scheduled for September 15th. My MRI in June showed that the tumor was 2cm, and I'm pretty sure it has been growing since then because further hearing tests have shown loss in decibels and word discrimination. At this point I seem to be showing other symptoms such as occasional facial twitches as well as some fatigue and wonkiness, but I'm not sure if the last two are just from my regular routine or just in my head. I'm trying to stay as positive as possible, as it seems to be key for a good recovery. Thanks for the support, advice, and prayers!

sarahinPA

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Re: Preparing for surgery
« Reply #8 on: August 21, 2011, 05:25:33 pm »
Heidi, I spent 11 days in the hospital due to some complications after my surgery (blood clot and pneumonia) i had some double vision at first so reading wasn't possible
Until the last few days in the hospital. It took me about 2 days to turn the volume up on the tv, but I did watch it most of the time. Facial wipes were important to me as well as my own soap and conditioner for when they finally allowed me to wash my hair. It had been a few days and my hair was so knotted up from the surgery, we actually had to cut out a chunk that we couldn't brush! It's not noticable at all! I put my hair in a pony tail before surgery, non metal hair band of course, which was a suggestion from a friend and o think it made a big difference!

I also had some inspiration, magnetic butterfly's that stuck to the machines above me and in my room. Thus played significance for me and was nice to see! Chapstick is a must! Ur lips will be sore and dry from the surgery and this was huge for me. I was always hot in the hospital and my family had to bring sweatshirts and often ask for blankets!!! My pain medications made me very hot, so just and FYI for your family!

Good luck with everything, we will be thinking about you!!!!
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

Itheus

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Re: Preparing for surgery
« Reply #9 on: August 22, 2011, 05:27:41 pm »
Hi Heidi!

Another "midwesterner" here (Des Moines).

There has been some tremendous advice on this thread and I can't add a whole lot to it.

I'm from Des Moines (went to Iowa City) and 31 years old.  I had my surgery July 21st of this year, and today was my first day back to work! 

Pre-surgery:  I came to these boards quite frequently.  Most of the posts were very soothing, and it was very cathartic to find a group of people that were going through what I was.  However, I did tend to focus on a couple of cases where things didn't go well.  I lost sight of the positive sometimes. 

It's natural to have anxiety about the surgery - don't be afraid to share your feelings.  I'm not usually one that spills my guts or shares my feelings too much.  This can be to my detriment.   You've done a great service to yourself by finding this site, and are doing a great job asking away!  Don't be afraid to let your significant other or a best friend know what you're feeling.

If possible, have your significant other come to every appointment.  I know this can be tough with you kids and work schedules, but there were times that I KNOW I got things lost in translation.  Also my wife could help recall details that I couldn't.  It's very soothing for both to be in the loop on this!

Keep in mind you will be pretty sedentary after the surgery.  If you have any projects that need to get done around the house that you want to be involved with, you'll either want to get those taken care of, or postpone them.  Since you're a mother of 3, I'm sure you're already plenty busy!   :)
I tried to shed a little weight by eating well and exercising to prepare myself...figured it couldn't hurt.  However I had plenty of weight to lose, and I wasn't experiencing much for balance issues pre-surgery.  Obviously balance issues may hinder how active you are.

Post-surgery:

Patience!  Focus on your progress, not your side effects.  I know this is easier said than done, but try to focus on the improvements everyday.  The first day will not be fun, but it will pass before you know it.  Everyone is different, but by the end of day 2, they had me standing and eating (every case will probably be different, just my own experience).  Improvements!

I loved my nurse staff.  Each one of them reiterated to make sure to "keep them busy".  Don't hesitate to let them know if you are feeling discomfort of any kind.  As others have said, listen to your body.  However also view each opportunity to "go for a walk" or other activities as "opportunities" for getting better.

Don't hesitate to let people know if you're not up for visitors.  You're going to be tired quite a bit.  There were times when I just didn't feel like talking.  My wife and I had a sign planned for when I was ready for my visitors to leave.  It's not being ungreatful, they'll understand!   :)

Once we were home, the thing that helped out the most was if a friend or family member brought over food!  So if you have someone that is insisting on help, a good, already cooked meal is great for both you AND your husband!

Wow, I was going to just write a couple of things and ended up rambling.  I guess everything is so fresh and you're so close in age, your case resonated with me.  Anyway, sorry for the long-winded post, but ask away with questions!

Aaron
« Last Edit: August 22, 2011, 06:21:42 pm by Itheus »

HeidiC

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Re: Preparing for surgery
« Reply #10 on: August 22, 2011, 05:53:03 pm »

Keep in mind you will be pretty sedentary after the surgery.  If you have any projects that need to get done around the house that you want to be involved with, you'll either want to get those taken care of, or postpone them.  Since you're a mother of 3, I'm sure you're already plenty busy!   :)
I tried to shed a little weight by eating well and exercising to prepare myself...figured it couldn't hurt.  However I had plenty of weight to lose, and I wasn't experiencing much for balance issues pre-surgery.  Obviously balance issues may hinder how active you are.

[

Itheus,

A different Heidi here, but I was wondering how long you were sedentary after your surgery, and/or maybe others can chime in.  My husband is deployed.  They have approved sending him home for the surgery, but only for about 4 weeks starting about a week before I even have the surgery so he can be sure to be home in time.  I am concerned that I won't be ready to be responsible for myself and the kids before he has to leave again. 

I hope your first day back at work went well!

And to Heidi in Omaha!...It seems we have somewhat of a similar experience, we both have young kids and are fairly young ourselves.  I have been following this thred and have learned some good information.  I was wondering if there was anything special you have done to prepare your children?

Good luck with your surgery!

~Heidi
Diagnosed 6-24-11 left side AN 3mm x 3mm
33 years old at time of diagnosis
Mid Fossia surgery 10-06-2011
with Drs Adunka and Ewend at UNC.

Itheus

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Re: Preparing for surgery
« Reply #11 on: August 22, 2011, 06:20:58 pm »

Keep in mind you will be pretty sedentary after the surgery.  If you have any projects that need to get done around the house that you want to be involved with, you'll either want to get those taken care of, or postpone them.  Since you're a mother of 3, I'm sure you're already plenty busy!   :)
I tried to shed a little weight by eating well and exercising to prepare myself...figured it couldn't hurt.  However I had plenty of weight to lose, and I wasn't experiencing much for balance issues pre-surgery.  Obviously balance issues may hinder how active you are.

[

Itheus,

A different Heidi here, but I was wondering how long you were sedentary after your surgery, and/or maybe others can chime in.  My husband is deployed.  They have approved sending him home for the surgery, but only for about 4 weeks starting about a week before I even have the surgery so he can be sure to be home in time.  I am concerned that I won't be ready to be responsible for myself and the kids before he has to leave again. 

I hope your first day back at work went well!

And to Heidi in Omaha!...It seems we have somewhat of a similar experience, we both have young kids and are fairly young ourselves.  I have been following this thred and have learned some good information.  I was wondering if there was anything special you have done to prepare your children?

Good luck with your surgery!

~Heidi

Hello HeidiC!

I have to give the standard disclaimer that each case varies, but here's my experience.  My wife went on FMLA the first week to stay with me.  I was discharged from the hospital on a Sunday morning.  The first few days I only got up to go to the bathroom, shower, and take my daily walk or two.  By Friday I was starting to feel a bit self-sufficient - I was making my own meals and getting around without any help.  Now these were very simple meals - either things like mac n' cheese, or leftovers that I just had to heat up.  I could dress on my own, though I had to make sure I was sitting down, and it was a tiring process.

By week 2 (the following Monday), my wife went back to work and I never had any issues taking care of myself.  Now, the only thing I cannot speak to is taking care of kids.  We currently don't have any, so I'm afraid I can't give any advice in that regard.

Good luck you both of you Heidi's!  :)

Aaron

Heidi in Omaha

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Re: Preparing for surgery
« Reply #12 on: August 22, 2011, 09:00:18 pm »
Aaron-
Thank you so much for sharing your story! I enjoyed reading every word, it was very helpful. I'm very encouraged by the types of things you were able to do relatively soon. Congratulations on going back to work! You'll have to fill us in on how your first few days/weeks go. If you think of anything else to share, please do! I really appreciate it.

HeidiC-
It is so great to find people on here that we can totally relate to! I have been reading your posts as well, and my heart really goes out to you and your family. I'm so happy that your husband can be there for you during the toughest times. Do you have any offers of help from friends or family? My children are 7, 6, and 2. As far as preparing them, I filled in the older two kids in a very simple way. They knew I had been going to the doctor a lot for issues with my hearing, so I started with that. I told them that my doctors said I needed to have a surgery because of my hearing loss  and to keep me from having other problems. I told them that I would be in the hospital for a few days, and that Grandma and Grandpa will be coming to visit and help. I also let them know that things will be different when I get home from the hospital, and that I will need a lot of rest. I told them that I will count on them to be my big helpers around the house. That was good enough for my son who just turned six. My oldest daughter, who will turn eight in September, is very caring and sensitive. She is concerned that it will hurt me. I explained that the doctors will give me medicine for during the surgery, and lots of medicine while I'm getting better. I answer her questions as simply as possible. I want to be truthful, but not too informative. It will be hardest for my two year-old. I can't really prepare her, and she is used to me being able to pick her up and be active with her. I'm sure our bed-time prayers will include lots of prayers for Mom. We will have to compare notes about caring for the kids post-op. My thoughts and prayers
are with you!

Cheryl R

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Re: Preparing for surgery
« Reply #13 on: August 23, 2011, 06:39:49 am »
Heidi, I always been really tired the first 2 weeks home and then improving.    This is with more than one surgery due to to NF2.       Once you are alone again than also plan that only what has to get done does.     Easy for me to say as no kids at home but I have been babysitting alot for several days of my 2 granddaughters at my house and theirs and have a real good idea of it.    My teacher daughter has no sitter till next Mon and she has been at work early.     Tomorrow school starts and I have just one child.   Her preschool starts next week.           At first it seems like will be forever before get less tired but it really does improve.     The no bending over and straining is important but you'll know if you accidentally do it as the head will tell you.     
Heidi in Omaha, there is a Skamper on here from Omaha but has been a while since her surgery so may not be here much.    I am in central Iowa so a bit of a ways away.         
                           Good luck to both Heidi's!                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Itheus

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Re: Preparing for surgery
« Reply #14 on: August 23, 2011, 03:12:04 pm »
^ ^ ^ ^ ^ ^

Cheryl was one that helped me out immensely in regard to expectations.  She has been a fountain of knowledge for me!   :)

 


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