ANA Discussion Forum
AN Community => AN Community => Topic started by: kdmayb07 on November 14, 2008, 04:23:45 pm
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I am nineteen years old, my mom is 48 and her results from the doctor came back and we found out that she has an acoustic neruoma. it's 3cm so apparently that is a medium to large tumor.
she's scared and sad. she is worried about the recovery. since she works in the public eye she's terrified that she will have facial nerve problems.
we live in chillicothe OH and she has a consultation with a neurosurgeon at OSU medical center. we heard about the clinic in Cincinnati so we might be checking that one out.
any words of wisdom or success stories for tumors of this size? just something to ease all of our minds would be lovely.
Thanks,
Kristin
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Hi Kristin~
What a sweet daughter you are to seek out information & support for your mom. There are several people here who are from OH so I know that they will chime in. It is definitely scary when you are first diagnosed & it is OK to be sad!! Make sure & tell your mom about this site, OK? You not find a better, more caring group of people who have "been there" or are very close to someone w/ an AN, like you.
K
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Kristin-
First of all - you sound like an amazing daughter!
As you probably know - the good news is that these are benign tumors and they are usually very slow growing, so your mom has time to seek out multiple opinions and options. Her AN may be on the large side for radiation, but it would be worth consulting with a radiation specialist just the same.
Not being from Ohio, I can't comment on the medical options there, but I am sure you will here from several other "forumites" from your area who can comment more specifically on that.
I wish I had magic words for your mom in regards to concerns about facial issues - that is something that concerns many of us. I can say that I see many, many people here who come through surgery with zero facial problems - I really beleive that those of us who end up with some sort of facial palsy or parslysis are in the minority. I, too, work in front of people and facial paralysis was my biggest worry. And, I was in the minority who got it. I'm almost 7 months post op and have seen big improvements in my face, but I still don't look quite like "me." It is not, however, as bad as I feared. Small words of comfort, I know. What I learned is that other people were far less bothered than I was, and no one laughed or ran screaming in horror ;D.
I'm only a few years older than your mom and my tumor was slightly smaller - I can honestly say that this was quite an experience, but it wasn't near as terrifying as I initially thought. Give your mom lots of patience during this next bit of time - she will need the support of those who love her now more than ever. For me, the two months between diagnosis and surgery were the toughest months of this entire experience. I would never have gotten through without my husband and family. Be patiend when she's sad, and when she's angry and give her lots of extra hugs. Keep in touch and let us know how she's doing - and don't hesitate to come here with any questions.
hugs to you, Kristin.
Debbi
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Thank you so much for your input, i told my mom about this website so she can start talking about everything!
i'm making it my duty to do online research about AN because i don't want her to read all of the horror stories out there (because there are more of those online than the success stories)...so i definately approve the attitude on this forum, everyone is so friendly and supportive, i think it would be theraputic for her to be a part of a support group like this one.
i can't wait to hear from all of you!
nervous but optimistic,
kristin
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kristin, hi and welcome from all of us ihope my three girls tun out to be as sweet and caring as you , kudos to you and kudos to yuor mom
i have been post op 4months, like your mother my face will be seen by many and my facial droop originally,was quite noticibl, but as mentioned by others some get it some dont and there are varying degrees of affect. the tumor is slow growing but can become quite invasive its important for her to follow up and trck it, is she having any symptoms, hope all is well
bill
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My mom has an appointment with a neurosurgeon on dec 17 to talk about procedures and get the ball rolling as far as taking the necessary steps...
right now my dad and i are calling family and close friends to let them know, my mom gets choked up whenever she has to talk about it, so we're trying to avoid that at all costs hehe.
as far as symptoms go, her dizziness is what caused her to see a doctor in the first place. she travels an hour to work each day, and sometimes she was so dizzy she felt like she shouldn't be driving. so the doctors ran some thourough brain scans and mri's and came to this conclusion.
when she came home, she looked up the symptoms they all matched. for the last few years she has experienced some hearing loss which she just contributed to getting older, but now we know that that isn't necessarily the case. she has also experienced pressure but she thought it was sinus pressure.
wow this is hard. does anyone else think that "tumor" is one scary word? i'm glad they came up with the term "acoustic neuroma"...it doesn't sound as creepy =)
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Kristin,
It's good to optimistic - and normal to be nervous! There are a lot of horror stories about everything out there on the internet and it's tough to filter out what to believe and what to ignore. You've come to a great place to get information from people who have actually been there and done that as far as AN's are concerned. I've always found everone here to be very honest about their experiences - the good and the not so good, but no one will try to scare you or your mom with horror stories.
It's great that your mom has you to help her through this and you're off to a great start - doing the research. It may seem overwhelming at first, but it will make sense and all come together.
I hope your mom can get on to the forum and read up on the wealth of information and personal experiences available. It's nice to hear what the doctors have to say about these things, but to me, even better to hear from someone who has actually had this diagnosis.
Good luck to you and your mom! We're definitely here with lots of support for both of you!
Lori
p.s. Yes, tumor is a scary word. You'll see that a lot of people here have chosen to call it anything but a tumor - some are kinda funny, actually!
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Kristin:
Thanks for posting your questions on behalf of your mom. This was a very considerate thing for you to do. We'll try to help, of course.
As Debbi noted, your mom's acoustic neuroma is medium-large but may possibly be a candidate for irradiation treatment, which is non-invasive (no cutting). This can only be determined by a qualified medical professional (doctor) after reviewing your mom's MRI scan. As Debbi also stated, acoustic neuromas are benign (non-malignant) about 99% of the time but because of where they're located, can be a real problem in many respects. AN removal surgery is a very delicate operation and your mom should only consider hiring a surgeon very experienced in AN removal to perform this operation. Like Debbi, I'm not from Ohio and can't offer any useful information on doctors and hospitals in your area but many other forum members are from Ohio and will chime in soon with the kind of information you seek, I'm sure.
I completely understand your mom's concerns regarding the risk of facial paralysis resulting from AN removal surgery. Frankly, Kristin, I had the exact same worries when I consulted the neurosurgeon I eventually hired to remove my 4.5 cm AN. I made my fears of facial paralysis quite clear and the doctor was very understanding and receptive to my concerns. He suggested a two-stage approach; first, he would 'de-bulk' the tumor, cutting off it's blood supply and reducing it to a shell, then after a 90-day 'rest period', I would undergo FSR (fractionated stereotactic radiosurgery) which was a series of 26, 'low-dose' radiation treatments aimed very directly at the remaining AN. These 'treatments' were about 25 minutes long, given on a 5-day, Monday through Friday schedule. The goal was to eventually eradicate the AN but save my facial and other vital nerves residing in the area of the tumor. The neurosurgeon was quite confident of the eventual success of this approach and, on that basis, so was I.
I underwent the (retrosigmoid) surgery in June, 2006 and emerged with my AN some 40% smaller and with my face basically as mobile as ever and almost no real deficits. With the exception of my one-sided hearing loss, my symptoms disappeared. I was driving again within two weeks. I regained my strength and in September, 2006 began my 5-week FSR treatments, driving myself to and from the radiation center (a 60 mile round-trip) each day. I suffered no ill effects from the radiation and my last MRI (in August) showed tumor shrinkage and cell-death ('necrosis') Now, some 2+ years out, I'm pretty much back to normal and doing great. For what it's worth, I was in good health but 15 years older than your mom when I underwent the surgery/radiation.
Kristin, everyone here will tell you, quite correctly, that we're unique individuals and because AN surgery is a veritable minefield, there can be no guarantees for any patient as to exactly how they'll come through surgery and/or radiation. I did great and I'm happy to use my experience to encourage other newly-diagnosed AN patients. Some folks do have a few issues to deal with, often including some degree of facial paralysis and some AN surgical patients experience a multitude of problems. Most people usually can surmount those in time and lead a full, productive life. You'll see many of our members post to you that can personally attest to that.
I don't know if my words will ease your minds but what I've posted is factual and I hope and pray that you and your mom will try to breathe a bit and not allow fear to control you.
Please try to remain connected here for information and support. We care and want to help in any way we can.
Jim
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i so appreciate all of your support, i am hanging on every single word of your postings, i can't express how much this is helping me deal with this...i'm reading all of your responses to my mom and her spirits are lifting....slowly, very slowly, but lifting. and that's what matters to me the most. she is my best friend, i hate seeing her like this. i feel like i'm not doing enough, or not saying the right things.
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Kristin,
My son Jordan was home from college this summer when I was diagnosed. He did a lot of research (admitted later that he stayed up the first night all night on the computer), only broke down once, and was a rock for me during and after surgery. Just be there for her, that's all you have to do and it means so much, believe me.
My tumor was also pretty large (see my signature below), I was afraid of facial paralysis (everyone is). I came through just fine, have very little facial nerve complications but was told the vast majority of folks do recover their facial nerve function eventually to some degree. If not, there are cosmetic procedures.
I highly recommend the folks at UH in Cleveland--they do a ton of these procedures--just ask the doc in Cinncinanti how many of these particular surgeries they have performed. It's going to be fine.
Hang in there,
Marci
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Hi Kristin,
Just recently another daughter in Ohio, named Carson, asked about her dad who had an AN. You might want to look at her first topic:
http://anausa.org/forum/index.php?topic=7784.0
Is the doctor your mom is seeing at OSU Dr. Brad Welling, by chance? As I said to Carson, I have heard good things about him. Carson's dad just completed surgery with him, and I believe he is doing well.
There are lots of cases of 3 cm ANs getting through surgery just fine. Your mom may have some months of facial weakness to deal with, but there is a good chance that will be it. Whether she gets any of the other side effects, or ones that last longer, is basically luck of the draw, so you just hope for the best.
Are all the daughters in Ohio as devoted to their parents as you and Carson are? Must be those buckeyes, I guess... ;)
Steve
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Hi, Kristin and welcome to the forum ;D I hope you can encourage your mom to join us; the forum has been very helpful to me and I'm certain she'd find it very helpful also
At 3 cm, radiation might not be a reasonable treatment option for your mom, but there are some doctors who might not agree with me.
I had an AN almost as large as hers and I chose surgery. I had a very positive outcome. I was 46 1/2 at the time of my surgery which was in May 2007. I am SSD (single-sided deaf) but that's not as horrible as it sounds. Lots of patients learn to adjust to SSD and for those who don't - myself included - there are some very good options. I personally opted for a BAHA implant and absolutely love it.
The word "tumor" is definitely a scary word. In fact it's a word that it took me months to use - I prefer the sound of acoustic neuroma or AN - and always encourage my doc to use those terms also ;) It's more of a head game than anything else, but even almost 17 months post op the word tumor still freaks me out :o
The ANA has some really great literature about ANs that you and your mom might find very useful. You may want to contact them and ask them to mail you some. They also offer a WTT (willing to talk) list of patients who have or had ANs that includes email addresses and phone numbers. It's a great resource that your mom might find very helpful.
Jan
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i will definately take a look at carsons posting, thank you so much!
i will also look up Dr Brad Welling, the doctor she has an appointment with is actually Dr Antonio Chiocca...but we will definately be getting second and third opinions.
and as for the buckeye thing...be it a buckeye or a wolverine we all love our mamas and daddys ;D
thank you!!
Kristin
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Hi Kristin, You are doing a great job for your mom. I'm exactly the same age as your mom. My AN was 3.5 cm and was completely removed in surgery. I had a little facial weakness, but 3 months later it is almost back to normal. I know this sounds scary, but I believe that the overwhelming majority of treatments of AN's like your mom's end up being a success.
Patrick
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i will also look up Dr Brad Welling, the doctor she has an appointment with is actually Dr Antonio Chiocca...
In that case, have a look at this post by Nancy (NW):
http://anausa.org/forum/index.php?topic=5825.msg53649#msg53649
Dr. Chiocca is a neurosurgeon, who apparently works with Dr. Welling, a neurotologist. Sounds like a good team to me.
Steve
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Buckeye kids rock.
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Hi Kristen
Having had a 24 year old daughter at the time see me through my surgery, I respect and commend you. It's a tough thing for children to have to face their parent's vulnerability. If you are interested in getting in touch with her let me know.
Meanwhile, in addition to Marci, there were several people from Ohio that you might want to get in touch with. Two that come to mind are oHIo and Melissa (I don't remember the numbers after her name). And speaking of Melissa, she was concerned about her facial nerves as well and asked that they only remove the part of the tumor that wouldn't affect the facial nerve. As it was, the surgeons had to leave some that later zapped with radiation. At last I read, I think everything worked out for Melissa. I understand your mother's concern being a public person. I was an actor working on Big Shots a year ago today. I would suggest your mom pursue the course that Melissa took.
Keep asking questions. You'll find a lot of answers here. And thanks for being a great daughter to your mom.
David
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wow, my family was shocked to find out that you can get a free second opinion via phone! that's so exciting! =D
and it's also great to know that there's an option like only removing half of the tumor! you guys are amazing hehe
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Hi Kristin,
Sorry I am late coming to this thread but I haven't been on as much as usual or when I have not as long as usual. I wanted to welcome you to this forum and ask you to encourage your mom to check it out too. She may read some things here that a kind of scary, but we are a supportive group and I think she will find this a wonderful source of information and comfort. I also wanted to say how wonderful I think you are to look out for your mom the way you are. Please feel free to ask any and all questions you have -- more than likely someone can offer some good advice or point you in the right direction.
Best wishes to you and your family,
Wendy
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HI Kristin- yes, definitely check out House Ear Clinic. I sent them a copy of my mri cd and got a call back within 24 hours from Dr. House (the son, not the founder). It was very helpful and was the first of three medical opinions that I got. I opted to have surgery closer to home in NYC, but am quite certain that I would have been very well cared for at House had I chosen to travel cross country.
Hopefully you will hear from Debbie (OHio) as I know she had surgery in Ohio.
BTW, I should mention that there are many of us here who are very willing to talk to you or your mom if/when you are ready. Just say the word.
Stay well,
Debbi
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As my sig says, I had surgery (a very LONG surgery) in May. As you can see by my pictures posted in "AN Issues" section Topic "Tinnitus at extremes" (or here: http://anausa.org/forum/index.php?topic=7909.15), I have very little facial problems left over and they say they got the whole tumor (my 1 yr MRI will be very telling I think).
You have received great words of encouragement and advice, so I won't dwell into that. But, I will say that not everyone is the same. We all recover at different rates, we all have different issues to overcome, etc.. What you all can best do is prepare for the worst but pray for the best. Ultimately, it's out of your control (somewhat) what issues are left over. If you do the research into all the various ways it can turn out and deal with the actuality when it happens, then the better you are. I've had my "bumps in the road" along the way (spent 4 days over the summer in the hospital with a reaction to some meds I was on), but after it all I'm doing great and leading a very active, "normal" busy life. Your mom can too!
I'm more than willing to talk. Either you or your mom are welcome to PM me your questions.
Regards,
Brian
PS Sorry for the late entry. :)