ANA Discussion Forum
General Category => AN Issues => Topic started by: bdsgurl on January 29, 2009, 09:55:26 am
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:'(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.
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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
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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
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Hi and welcome ;D
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
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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
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I really appreciate all your replys. I am having surgery at St vincents med hosp. with Dr brackman of Ear House Institute...
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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? ;D
Hang in there,
Sue in Vancouver, USA
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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
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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)
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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
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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
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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
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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
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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
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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
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As many have posted you are in good company with a lot of us in this group. One of the reason I choose surgery was due to the great ladies in my support group with children that had gone through this journey. So remember you are not alone. Positive thinking is the key to this AN issue. So be strong for your family - and remember that FEAR just stands for False Evidence Appearing Real.... Turn your fear over to GOD, Cast your burdens on to him. Prayers from Florida....
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Hi and welcome
It is normal to be frightened after receiving your diagnosis, all of us were. The most important thing to remember is that while this is a frightening experience, you will get through this in one piece. My children are older (12 & 14) so I didn't have the concerns you have regarding nursing but I too was concerned about how I would be after surgery and how it would affect my children. The best advice I can give you for now is to continue breastfeeding your baby since this is a priority and pump to increase your supply. As others have said, have an advocate come to the hospital and help you. Do your homework. Research ANs on the internet and ask questions here. Understanding what you are faciing takes the mystery out of it and (in my case anyway) understanding what you are facing can relieve much of your fear. Dr. Brackman and the House Ear Institute both have excellent reputations and many in this forum have been treated there.
Please know you are not alone -- we are all here to help in whatever way we can. Feel free to ask any questions and vent when you need to.
Best wishes,
Wendy
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My kids were 1, 5, and 8 when I had surgery. And yes I was scared. I never verbalized it but my the night before surgery I stayed up late writing each of them a letter. I put them in a place where my husband would find them if something happened to me. My hospital stay ended up being almost 2 weeks and he did find them. He said he cried when he read them even though I wasn't in danger.
My surgery was 5 years ago. My older two still ask questions about that time and I learned months after surgery that they each asked people if I was going to die. One asked my brother, the other asked a family friend.
After surgery, my kids stayed with my parents for about a week after surgery and they came home one at a time. My mom did bring them over every day for long visits. I have to admit I looked forward to the peace and quiet when they went back to her house. I had them all home and to myself about 3 weeks after surgery. For me that was right, I had a longer than normal hospital stay.
You are not alone, as others have said. The days before surgery were the most anxious for me. My mom said I called her numerous times a day saying "Just one more thing". I made lists upon lists upon lists. I cleaned my house (like nesting). I took my 1 yo to the zoo in my VERY dizzy state because we hadn't been yet.
Stay strong and we are all here for you..........
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you'll be in good hands... I also had Dr. Brackmann.. and I was also 4+ cm !!...
I know its scary :o ... it will be hard at first.. we will all be here for ya... :) :)
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Hi Bdsgurl
I can't add much more than what has already been said. I think all of us go through the fear and anxiety. It's normal. But you'll find that as the day gets nearer, you'll find a sudden peace -- especially when you talk with the doctors. Also, there is a group of us here in LA that get together with ANers when they come into town before surgery. If you're interested in getting together with us, let me know and I see who's available. We usually meet in the St Vincents cafeteria. There's generally two or three of us -- we're there for support.
David
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Hi,
I've read your post and feel your pain. I was 28 when I had my first AN removed and was just married. Over the past 7 years I found out that all of the cells were not removed and that I had a regrowth. At the age of 35 and with two kids, I just had a translab done 5 days ago. I found out about the regrowth 7 weeks after my son was born and waited two years for the surgery. Two years of serial MRI's, worry and everything else that comes with it, I've braved my second AN surgery. I probably should've done it sooner but couldn't get the nerve to do it. Given that you have no choice but to have it removed in a timely manner will work to your benefit. You will find a sense of peace as the surgery closes in as you must put your trust in god and your surgeons. You will do great! Get this behind you and you'll be "mom" in no time flat.
Jen
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I hope you've gotten some comfort from the posts.
I would only add two things -- one is to make sure and tell Dr. Brackman himself of your concerns, your desire to continue nursing, etc. My impression from posts here is that he's a wonderful guy; we tend to idolize doctors so much that we forget they are actually interested in our lives, our children, how your surgery will affect your particular life -- and they're willing to help your particular situation.
The other is to please, please, make sure YOU get enough rest after your surgery. Experience with relatives has 'proven' to me that rest is critical to recuperation.
As many have said, children are resistant -- they'll do fine. If it's any solace, my mother had a radical mastectomy in 1952 when I was three years old (I'm 59 now, and my mother was a 40+ year breast cancer survivor when she died in the '90s), and although I think I've had some "abandonment" issues because of that experience (none of which I remember), I'M FINE -- I like myself, I'm having a good life, it definitely didn't "scar" me forever.
Do keep us posted, acknowledge your fears, know that it'll take time to recover, but know that you'll be OK and your kids will be OK.
Dana
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Hi there!!! Everyone else has pretty much said everything, but I figured I'd post a little something too. I am 29 and was diagnosed last July. My son was 15 months at the time of my diagnosis. My surgery was Nov. 17th, and with regards to the tumor removal, everything went perfectly. I had a few complications stemming from something else, not the tumor. Surgery lasted around 10 1/2 hours because the tumor was about 3 times bigger than they thought / or had grown since the MRI.
You will do fine, and have faith!!! I prayed a lot too because I wasn't ready to leave my family either, but I knew it had to be done because of the consequences of letting a tumor continue to grow near my brainstem. Surgery was going to help me live long enough to see my son grow up.
This forum is a gold mine and a great source of information from people who understand more than anypne else what you are going through. Hang in there and best wishes for a speedy recovery. If you have any questions, you can PM me. I am also an operating room nurse, so I can help you out with any fears/questions you may have about that as well. You are young and healthy and those are both greatly in your favor for a positive experience.
-Amy
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Hi, welcome to the AN site. Sorry to hear you are joining us. I am 10 weeks post-op with 2 kids 8,10. I also was scared and did not want to say good-bye. I put my faith in God and my Dr. at the Mayo clinic. I did tons of research and knew I was not going to die from this operation. This forum will help you prepare. It will be tough while you are in the hospital, but time will go by and you will be home before you know it. My kids only came to the hospital 1 time but that was ok, they did not know what to say or do.
Have babysitters for when you get out for at least 2 weeks because you are not going to do anything. It really helped when my friends brought over dinner for 2 weeks after I got home. Your kids will be in good hands and can see you are doing good. They are passionate buggers and will help you and be good.
Stay on top of your meds and write them down, recovery will be slow, take it easy and rest alot.
Sending warm hugs to you and your family, keep reading and will keep you in thoughts, JB
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ok Mom now here's what they told me about my almond sized tumor.
1. this is serious surgery yes. but its rarely very rarely fatal. you have a far better chance of getting hit on way to ER for the surgery.
2. 4 to 6 days in hospital is the norm more or less as i hear folks in here. THEN its going to be weeks at home until you are even close to functional again. so get some help at home. Mommy isnt going to be just jump up ok for quite awhile.
3. relax . do what YOU do to relax. cry if needed. find a local ANA support group if you can. ask hospital and or your ENT about those.
4. and of course you have here too. relax mom its going to be ok..........really
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I sent you a PM, hang in there. But one thing I forgot to add that I thought was very helpful to me, and especially helpful to my children was that my family/friends and I tried to keep there lives on the same schedule and as "normal" as possible. I think it helped with there comfort level to keep normalcy and a routine like we do everyday.
And dont' feel guilty about resting or getting in a much needed nap when you're at home, you're no good to them if you're not feeling well. And they can sense all of that! I also talked with our pediatrician before I had my surgery on things that may help them through it. And a few of the things he said were: "don't fake that you're fine, because they'll know you're lying. Get as much rest as you can so you can be there for them, dont' feel guilty about getting rest. Keep as much normalcy as you can in there lives during this time. And be open with them and be as honest as you're comfortable with about what is happening and going on with you....the unknown scares us, imagine how they feel.
Hang in there! And please feel free to contact me :)
Melissa
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Good Luck tomorrow. Sending great healing thoughts your way.
Feel the love we are here for you.
{{{{{Big Cyber Hug}}}}}}}}}
Michelle :-*
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I'm hoping she'll get someone to call or post on here to let us know how things went today. Annalisa, you remain in my prayers...
Vonda