ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: ksiwek on March 17, 2010, 03:19:37 pm
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Hi everyone! I wanted to introduce myself as a newly diagnosed AN patient. After spending time reading through posts, I know that this will be very helpful in the days, weeks and months to come.
I will start by saying I have had a rough couple of years. Last year, I went into preterm labor and lost my little baby girl. After dealing with fertility issues, we are finally pregnant again. Everything had been going so well with this pregnancy, until I noticed the hearing in my left ear had decreased significantly. I ended up requesting an MRI, even though the ENT told me that likely it would show nothing. I am a neurotic pregnant woman so I asked for one anyway. Glad I did as they found a 3.5cm tumor! I can't believe that I am about to endure another significant life trial so soon...
Doctors think I can hold on until 35/36 wks to have my baby via c-section (they don't want any pressure on the brain as it is pushing against my brain stem). I would then have surgery a week or 2 after baby.
I am so sad, scared and angry. I am so scared that the tumor will grow over these next 10 weeks. Waiting is so hard. I just want it out now! I am so sad that I won't be able to care for my little guy like a normal mom once he is born. I am so scared for surgery.
I am in medical device sales so I spend most days in the operating room for general surgery. So the hospital environment is comfortable to me, but I think the extra behind the scenes knowledge actually makes it harder.
Any words of advice. I am having a hard time deciding on a surgeon. I want to find someone with much experience of course, but also have to take into account that I will have 2 week old that needs to be taken care of while I am recovering. I go see the Mayo clinic surgeons for another opinion (Drs Link and Driscoll) soon as they are reasonably close to me.
I am trying to find my way to a positive place but the depression is overwhelming. I am blessed to have an amazing husband, family and friends for support. But this is one of those things that you can't help but feel alone. Help!
Kris
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Hi, Kris - and welcome!
You've certainly come to the right place. Although I'm sorry to learn you have an acoustic neuroma, I'm glad you found the ANA website and the discussion forums. We have many active members who have a wealth of experience with ANs and are eager to help, inform, advise and, most of all, support you in any way possible as you struggle with this challenge.
I'll allow others to chime in and add their comments but I want you to know that the Mayo Clinic has a splendid reputation and that thousands of us have undergone AN removal surgery with much success. Your supportive husband, family and friends will be a Godsend, I can assure you. Research and find a doctor with much experience operating on ANs. There are many. I had one. Unfortunately, he's in Connecticut but I'm sure you'll find the doctor that fits your needs, a bit closer to home. Please consider the forums as a resource - and take care of yourself and your (unborn) baby. :)
Jim
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Hi Kris .....
Welcome to the Forum. Yes, you have had a rough couple of years and I don't blame you one bit for being sad, scared, and angry. Take a deep breath and let us become your AN family with loads of reassurance and support available!
First of all, my own AN was not diagnosed until long after my three pregnancies, but I am a mom and can share in your motherly feelings right now.
Keep in mind that ANs normally grow very slowly, although you need to remain watchful for that occasional rare rapidly growing one. Thus, you should be able to complete your pregnancy without a huge growth in your AN.
Mayo Clinic is outstanding as a medical facility so you will be in good hands there.
There have been several pregnant gals on here with ANs ..... Cynthia (designergal) is expecting in July. (I private messaged her to look for you here.)
In the meantime, if you have not done so already, be sure to send for the ANA materials. They have loads of information and much reassurance.
As for after surgery, many of the members of this forum have had babies after AN removal and I know they will chime in here with their experiences. You may do things a little differently depending upon your recovery, but you will definitely be able to take care of your little guy like a normal mom. It is good that you have a husband, family, and friends for support because you will need more assistance than just recovering from a C-section.
Best thoughts and many prayers.
Clarice
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Hi Kris!
Although I am sorry you have to be here (AN) - I am so glad you found us! There is a wonderful group of caring and supportive people here. Ask anything - that is what we are here for! I had AN surgery when I was 25 and only had been married for a year, but I went on to have 3 beautiful girlies. Things were a little different for me but not really. I know that you are concerned about so much right now but trust me when I say that in a few years, this will all be a distant memory and you will be enjoying your family. If I can be of any help or you would like to chat on the phone, please PM me.
K ;D
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Hi Kris! I am so sorry to hear of the stress you are under right now, and will be thinking about you and your little one! I too was pregnant with an AN, but didn't know it until 4 weeks after my son was born. Thankfully, I had a C-section for unrelated (?) reasons and then had surgery for my AN when he was six weeks old.
Although our situations sound somewhat different, I just wanted to lend you whatever positive thoughts and support I can. I would suggest using the expertise that is here on these boards - I think there are some really, really experienced, knowledgable and positive people who can help you, and of course, please let me know if I can answer any questions for you, or lend an ear.
Martha
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Hi Kris and welcome.
First of all, let me say how sorry I am at the loss of your little girl. I can't even begin to imagine how hard that must have been for you and your husband. I am glad that you were able to get pregnant again and I'm sure the doctors will be keeping a very close eye on you to make sure things go smoothly for you and your little boy.
The sortof silver lining here it that the doctors know about the AN, which is a good thing and they'll know what to watch for as far as any problems. Much better than having the AN there and not knowing about it.
I won't lie and say it will be fun having surgery when you've just had a baby, but believe me, that little guy will be so much incentive for you to get better! My youngest was 9 months old when I had my surgery and was definitely all the motivation I needed to get moving so I could get back to just being mommy. Hopefully, you'll have lots of help so you can recover properly, but I know that snuggling with your little bundle of joy will be the best medicine ever and you'll be able to be the best mom ever.
I'm a nurse, and I know what you mean about sometimes having seen too much! Fortunately, I'm a lightweight when it comes to drugs, and as soon as they give me something that "will relax me and not put me to sleep", I'm down for the count, so I don't remember ever being brought into the OR. I just remember magically waking up in recovery, and that's just fine with me. Ask the anesthesiologist to give you the good stuff in the beginning!
I don't know what to say to help your stress level over the next few weeks, but just concentrate on your baby and getting him strong and healthy and big. And if you choose to have your surgery in the Virginia Beach area - I'd be more than happy to babysit!
Hang in there!
Lori
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Thanks everyone for your kind words. It really helps to hear from each of you. Of course its nice to hear words of encouragement from family and friends, but you all are the only ones that 'get it'. For me it is going to be hard waiting for these next 2 months and believing that all will stay stable!
I spoke with Dr Brackmann from HEI today who believes that I can make it until 35 wks (that makes 6 docs). I know they have such a great reputation and I have read through great referrals from so many on the forum. I just don't know if I can go that far away with a newborn. I am hoping that after meeting with Drs Link and Driscoll on 4/1, I will have peace of mind about my decision. I have talked to other surgeons already, but didn't feel that they have the same experience...is there anyone out there that just had surgery at Mayo or is getting ready to?
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Hi, Kris and welcome to the Forum.
I'm sorry to hear about the loss of your daughter. I have a very small idea of what you are going through. I was a fertility patient for 8 years before I finally had a successful twin pregnancy and along the way I suffered two miscarriages. Infertility is definitely a physical and emotional roller coaster ride, and while I can't even imagine being diagnosed with an acoustic neuroma on top of everything else, remember that God never gives you more than you can handle. You WILL get through this and you WILL be fine. You'll be amazed how much strength you have - that you weren't even aware of.
I've heard of Drs. Link & Driscoll, and as Jim said, Mayo has a great reputation.
Good luck with your appointment on the 1st.
Jan
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Kris,
Congrats on your pregnancy! and sorry to hear about your AN. I found out last August that I have a 2.6cm AN. I was set to have surgery in Nov with Dr Fukushima in NC and found out 2 weeks before the scheduled surgery that I was pregnant. I am currently 25 weeks and doing fine....my AN symptoms have not changed since becoming pregnant. I am planning to have an MRI in July to see what my tumor has been up to the last 10 months and make a decision at that point to see if I should have the surgery or wait 6 months or so...I am planning to nurse as long as I can.
Good luck in the next few months....and please send me an email if you have any question between now and your delivery and surgery!
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Kris,
Wow. I am so sorry that you are dealing with an AN instead of focusing all of your energy on the joy of your pregnancy, particularly after the loss of your baby last year. That is very unfair and more than any one person should have to deal with.
I am a mother of two smallish children (3 1/2 and 6 years old), so I can only imagine how difficult it will be to go through a surgery so soon after giving birth. However, I can also tell you that you will be able to do a LOT of bonding during those first two weeks after your baby is born. It only takes one glimpse to fall in love with your own child. :) Your baby will give you a reason to fight to get better.
Please know that we are here for you if you need to talk or vent. What you are going through isn't easy and it won't be easy, but one day you will have your child and your health and I have faith that you will be able to count your abundant blessings and look back on this time as something that made you stronger. I am only 3 1/2 months post-op from my own AN, and I already feel that way. I don't think I will ever dismiss what I went through as easy, but I am proud that I didn't let it beat me.
Lyn
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Thanks mommas out there for your words of support! I know that my little man will help me recovery quicker...I will be anxious to be able to take care of him on my own. It will be really hard to want to go back to work ever after going through all of this. Talk about changes in perspective :)
Does anyone out there have any thoughts about Dr Brackmann vs. Dr Friedman? Is Dr Friedman doing more these days? How did you decide...was someone's referral or who HEI directed you to?
Thanks!
Kris
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Kris,
Welcome to the forum. Sorry to hear about you losing your little girl and the bad news about your AN. God works in miraculous ways and he will give you strength to get through this for you and your baby. The AN tumors are slow growing, some people have them for years before they even know until some symptoms arise.
Our prayers are with you.
Cathy :)
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Hello all, this is Kris' husband. I just wanted to chime in and say that I am in awe os the influx of support and great information available through the fine people that make up this forum. It is such a POSITIVE outlet for Kris (and me) to get out all of those feelings that are neverending. I know many of you have much more insight and are able to empathize in ways that I cannot, and I am truly greatful that you're willing to share. It is too easy for anyone to get negative and misinformation on the web, so 1st hand words of experience are invaluable and second to none. Yes, Kris read the subtext here. :) I know it's going to be a long two months until the baby comes, but without you guys I think she (and subsequently me) would go mad! Thanks for listening.
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Welcome to you, Kris' husband .....
Sometimes being the spouse/caregiver is almost as traumatic as being the patient. I know my husband felt so helpless when I was diagnosed. I reassured him, just his being there for me was a tremendous relief. This is a tough time but you will make it. As Donnalynn said, once you have decided on a treatment plan, you will feel a great sense of relief. It is always the unknown and uncertainty that is so frightening.
Many thoughts and prayers as you make a decision and walk this journey together.
Clarice
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I'm so glad you both found the forum!
You have been through a lot, and it looks like the journey isn't quite over yet. I have a similar story in that I suddenly lost hearing in my left ear about halfway through my second pregnancy. The AN wasn't diagnosed until a couple months after my son was born (I didn't push for an MRI while still pregnant) and for a few weeks we were convinced that I would have to go for immediate surgery. Fortunately, the inexperienced radiologist misread the MRI and my AN was much smaller than originally thought so I was able to watch-and-wait for a while. I did have surgery when my sons were 4 and 1.5 years. I've since gone on to have another baby - my daughter will be 1 next week!
The first 4-6 weeks after AN surgery are the worst. But by 6 weeks, I was taking care of my two boys by myself during the day. Of course, everyone's recovery is different and you'll also be recovering from a c-section. All the more reason for doing nothing but resting and snuggling with your baby. Good thing newborns want nothing more than to sleep in their mother's arms! You should be able to do that just fine, even if your' lying down to do it.
When reading your story, the only caution that popped into my mind relates to my own post-partum experiences. With my first two pregnancies, I suffered a fairly hard post-partum depression for a few months. With lots of support, everything worked out fine and I was feeling better within 2-3 months. PPD is not something you can control - it happens to some women, and not to others. But if it does happen to you, please don't ignore it. It might even be worth talking to your OB and the surgeons to ask what they might recommend as a course of action if you do have symptoms of PPD. The likelihood is that it won't happen to you, but I'd want to be prepared.
That "depressing" note aside, know that having an AN has absolutely no bearing on your ability to be a good parent. I'm raising three small children and rarely even remember that I had surgery 3.5 years ago (other than sometimes having to ask my kids to repeat themselves if I couldn't hear them). Life goes on in a wonderful way. It's a rough couple of months, but then you'll be feeling better and better and it will all be a blip in your lifetime. And your son will never have a clue that this happened to you when he was newborn.
Continue to ask questions. (((hugs)))
Katie
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Well we decided to go to Dr. Friedman at House, and it is such a relief to have that load off. Kris is in a much better place mentally now, which I am so happy about. Friedman has been absolutely great so far, even though he's many many miles away. He has communicated with her perinatologist and they have mapped out a plan for the pregnancy and the surgery. He wants to talk to Kris on a weekly basis to stay in touch, which is a big thing in keeping her sane for these next few months! It's so nice to be at a point where we can trust the docs to get things done for us and take some of the worry away. Thanks all for the info helping us make this difficult decision, although when all the facts were gathered it didn't seem so difficult after all. We'll keep everyone posted on the baby progress first, then the surgery.
Mike
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Glad you got everything figured out - having a PLAN always makes me feel better!! I know you will be in good hands. Enjoy the next couple of months!
K ;D
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Making the decision about treatment (or waiting for treatment) was the hardest part for me. Once I made the decision, everything else got better. You're in good hands (all three of you!). Keep asking questions as they come up, and we'll be thinking of you!
Katie
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Kris, sorry i messed up my last msg...i'm writing on my phone. Your situation sounds like mine somewhat. I, too, was diagnosed during a pregnancy and needed surgery quickly due to brainstem compression. I was 27, having my third baby. It was so very scary and depressing for me, too. I had a healthy delivery (my easiest of 5; 2 of my babies were post-AN). It is so great that you have support; you will appreciate it. True, I cannot be the same mom I was pre-AN, but in many ways I am bettter. I have had to slow down, and I can put loving my children before keeping a perfectly clean house. I read to them even though dishes need to be done and laundry needs to be folded~things cranial nerve damage from brain surgeries have made difficult. These disabilities have forced me to put people before things. I was a type A personality who probably would have valued doing chores over spending time with my family. Soooo, just take one day at a time, do your reaearch, plan for lots of help! best of luck:)
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Watching for an update?
Michelle :)