ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Heidi in Omaha on August 11, 2011, 07:38:17 pm
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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!
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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. :)
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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
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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
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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
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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
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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
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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!
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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!!!!
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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
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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.
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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
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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.
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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
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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!
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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
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^ ^ ^ ^ ^ ^
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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I have a 5 year old girl and almost 7 year old boy. I have told them that I have an owie in my ear that the Drs have been taking pictures of and have decided that they need to fix the owie. I don't want to use the word tumor or things like that, because I don't want them to hear the word elsewhere and decide that they need to worry about it. They know that I will probably be at the hospital for about a week and will come home with a cut and stitches on my head(I was trying to prepare them for what they would see when I come home).
They seem to be taking it well and are more worried about missing me than the actual surgery, though they seem to be taking that in stride too. I think they may be taking it so well because they are already used to their Daddy coming and going so much that having a parent gone for a week isn't really a big deal. I must say though that I am not looking forward to telling them goodbye on my way to the hospital. I actually think they are looking forward to it in a way, since their daddy will be home for a while and their cousins will be visiting while I am in the hospital so that my sister can help watch them.
Other than my sister and her family coming out, and my husband coming home, there is no one else that I can really count on to help. A couple of neighbors have offered help, but its the type of thing that one has to wait and see for if you know what I mean. My sister will likely only be staying for as long as I am in the hospital, so that my husband can spend a lot of time there with me. My sister has 4 kids-8, 5, and 2 yo twins, and the general concensis is that I won't be able to tolerate the noise of our combined 6 kids when I come home after the surgery. She may stay for a day or 2 after to help keep my kids happy, but that will have to be a wait and see kind of thing.
Thanks for the kind thoughts and the helpful information. I am keeping good thoughts in mind for you as well, Heidi, for your upcoming treatment and for the others in their continued recovery!
~HeidiC
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Good luck, Heidi and Godspeed.
Personally I don't think all the kids - and their noise - will bother you. Chances are you'll be tremendously fatigued when you get home and you'll sleep a lot.
As for the neighbors, although it's hard, ask them for specific things - like making a meal for your family, taking your children for 2 hours, etc. Sometimes people offer to help, but "help" can be vague and it's easy to not follow through; plus it's hard to determine what someone else needs. If you ask for something specific, it's easier for the helper to commit to and they don't have to figure out what might be helpful.
Just my two cents,
Jan
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We have never told our almost 8 yr old granddaughter exactly either what I have been thru with 2 surgeries when she was 2 and the last when she was 4 1/2. She always looked at my bandage and then back to playing. Her sister is 4 now and they are around me alot and part of the time remember that my hearing is not like theirs and come by to talk and not yell from the next room. The oldest still looks in my ears and wonders about it all since the ear looks just fine. She was not around for the very first surgery almost 10 yrs ago. We will tell her in time about it. These little sweeties has been what helped keep me going thru all this! Just glad I have got to hear them and babysit them. Cheryl R
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Thank you Aaron for the compliment. I am just glad to be able to help esp the Univ of Iowa ANers on what to expect and hints about the hospital and routine. Cheryl R
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One of the biggest things people helped me with was making meals for my boyfriend and I. Although we had more lasagna than one family should eat in a year, it was a great way to make dinners for us, without much work. Hopefully your neighbors will be as kind as mine, and will help in that way!
Sarah
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Final count-down time until surgery on the 15th, less than 10 days. It's getting real. Thanks to this forum, I feel very well informed and in good company.
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Heidi,
Good luck on the 15th! Let us know how you are doing, when you are able to get online.
Heidi :)
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Yes, definitely come back and let us know how it went!
Aaron
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Heidi,
good luck. Your surgery will be over soon and you will be able to go back to your sweet kids in no time. Take good care of yourself and give your body plenty of time to heal. We will be looking forward to hearing your news.
Marianna
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Hello, everyone! This is Heidi's husband, Jason typing for her. She wanted me to give you an update about her surgery and what has happened since then.
The surgery itself went very well. The surgeons were able to remove the entire tumor, and the surgery was a success. Heidi went into the ICU for monitoring as she was coming out of the anesthesia, and everything looked like it was on track. About 10:00 the next morning, Heidi started having some difficulty breathing. When the nurses did their regular neurological checks, Heidi was becoming less and less responsive. The doctor ordered a CT scan. While they were doing the scan, Heidi stopped breathing. The team immediately put her on a ventilator. As the hours dragged by, heidi's condition slowly stabilized. Apparently, heidis brain started to swell after the surgery. The sweeping put pressure on her brain stem, affecting her lower brain functions. In addition, heidi became very weak on her right side and needs to have therapy to regain her ability to swallow. Over the course of the next week and a half, the swelling gradually subsided, and Heidi was moved out of intensive care. In order to be able to discharge her sooner, Heidi underwent surgery to place a G-tube into her stomach.
She continues to improve every day. Her spirits are high, and she has the support of many friends and family members. With God's help, she will be moved out of the hospital and into acute rehab next week.
A friend of ours has started a care page for her. If you are interested in regular updates, you can visit http://www.caringbridge.org/visit/heidischmidt.
Thank you for being such a community of supporters and encouragers for Heidi leading up to this surgery. Things have not gone the way we wanted them to, but I really appreciate the support that you have and will continue to give Heidi as she recovers. Thank you!
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Jason .....
Thank you so much for letting us know about Heidi, even though it is not the news we were hoping for!
Please tell her that her AN Forum friends are right here cheering her on for what we truly hope is a rapid recovery from these unusual set-backs.
Many, many thoughts and prayers.
Please continue to let us know how she is doing as you are able.
Clarice
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Hi Jason!
I, too, am sorry for the way that things have turned out for Heidi. However, I am living proof that even bad outcomes can be overturned with a lot of work and time - and a sense of humor and a good attitude doesn't hurt. Please feel free for you or Heidi to PM me or I'd be more than happy to chat with you on the phone - let me know.
My prayers are with you BOTH as you begin this journey together - you WILL get thru this - lean on each other and the Lord for strength and guidance!
K ;D
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Hi, Jason ~
We really appreciate the informative update on Heidi. Of course, we're sorry to learn that she encountered post-op complications but we're also glad to know that she is improving and in good spirits. I trust that the therapy will be effective, the feeding tube can be removed and your wife can return to a more normal existence fairly soon. Meanwhile, we thank you for having the consideration to post an update on Heidi's behalf and look forward to seeing more as she progresses. Perhaps, from Heidi, herself. Our thoughts and prayers are with you both.
Jim
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Jason -
I'm so sorry to hear that Heidi had complications from her AN surgery and things didn't go as smoothly as they should have.
Tell Heidi to hang in there and keep her spirits up - having a positive attitude will help her immensely in her recovery.
Hugs, kisses, and prayers to her - and to you.
Best,
Jan