ANA Discussion Forum
General Category => AN Issues => Topic started by: CarolineO on February 02, 2011, 02:15:05 pm
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My 14 year old daughter had 2 AN's removed last Fall.
We found out on August 31 that she had a tumor. IT was the
size of a golf ball.
First surgery lasted 12 1/2 hours. Very successful. She was up and
walking within 2 days.
They found a second tumor and it was removed 6 days after the first.
She will be having the BAHA implant on 2/11/11.
Just found this group today. She will be interested to talk to others
as at times she has felt isolated.
Dr. VG Stewart with Johns Creek ENT (Gerogia) and Dr. Hadjipanyis with
Emory University Hospital Mid-Town (Atlanta) perfomed her surgeries. Excellent.
The doctors were very kind and thorough. She has no pain. She quit using
pain killers within 3 days of
each surgery.
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Hi CarolineO and welcome to this forum .....
Sorry your daughter is having to deal with ANs at such a young age ...... but so glad you have found good care for her.
We have a couple other moms of teenage AN patients on this forum. Hopefully they will join in on responses soon.
Ask away with any questions/concerns you have or stay with us to support others. This is a caring, supportive group of friends.
Best thoughts. Clarice
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Hi and welcome Caroline.
Although ANs generally don't manifest until middle age, we have a number of young people frequenting these forums who have had to go through the 'AN experience'. However, 14 is probably the youngest AN patient we've come across. I'm very pleased to learn of your daughter's successful surgeries. I'm sure she'll receive many responses to any messages she posts here. This is an active website message board comprised of very supporting people, always eager to help, advise and, most of all, support AN patients. Your daughter will find friends, here. :)
Jim
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Caroline -
2 ANs are somewhat unusual. Is your daughter NF2?
She'll love her BAHA. I've had one for almost 3 years now and it's incredible.
Jan
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I met a 16 yr old guy at Univ of Iowa while in the waiting room to see my surgeon. Couldn't tell he had had AN surgery and was doing well. Only one AN. I think it was last spring.
Was your daughters tumors on the same side or on each side? Just wondering she was NF2. Cheryl R
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Welcome Caroline!
As the mother of a 13 year old, myself, I can't imagine what this was like for you. I have always said that I was glad it was ME and not my children or husband! I am glad that she is doing so well. I was sondering also if she was NF2...
Feel free to ask any question - that is why we hang around!
K ;D
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Oh my goodness, so young to have to deal with such things. I'm glad she's doing well. Good thing kids are tough and bounce back pretty well. She must be a very strong young lady.
I have a BAHA and I'm sure she'll really be happy with hers.
You are both very welcome here. As adults we can feel isolated because this is not a common thing, but even more uncommon in a 14 year old, so I'm sure it can't be easy for her. I can only imagine how hard it is for you as her mom. Lots of good advice from moms and other caregivers on the forum too.
Welcome to both of you!
Lori
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Hey, Caroline! Glad to see you posted - was so nice talking with you yesterday - what a positive message you have! I look forward to meeting you and your daughter sometime soon.
Please be sure to let us know how the BAHA implant goes - know she'll do very, very well as she did remarkably well with her AN surgeries!
Cindy
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HI, everyone. Thanks for the replies.
I told my daughter about the site and she will be checking in sometime soon.
Her tumors: 1st one was on the 8th cranial nerve on the right side. After removal they performed
an MRI and saw another above her brain stem. It was only 1 cm so that surgery was only 5 1/2 hours.
Genetic results came back yesterday- NO NF2. Just a very rare case of AN's.
Danna is doing great and is trying to get caught up with her first semester of missed classes and
work on her second semester at the same time. We are grateful that her surgeries did not result in any
damage other than the loss of hearing on her right side. (She had lost of it anyway so her surgery
was performed through her ear- scar is behind her ear.)
We have been stretched in a lot of ways since the ENT appointment on 8/31/10. Learned a lot but we
are so happy that Danna no longer has headaches, vertigo, etc. Now the BAHA implant next week and
we'll see what life has in store!
Thanks for having a group!
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One more note - her first tumor is was between 3.5 cm- 4 cm.
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Hi CarolineO and welcome,
I'm glad to h ear that Danna is doing to well. One AN is a lot to deal with but I can't even imagine the stress of having to go through two AN surgeries back to back, especially at such a young age. She must be a very strong young lady and have a strong sense of being supported by her family. You are both welcome to ask questions, vent or just compare experiences, we are all here to support one another.
Best wishes,
Wendy
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Hey everyone!
Im Danna. The subject of this forum. I can say that handling those 2 tumors was stressful and very hard. A lot of tears were shed wheter they were happy because im alive and can hear or sad about having to deal with this. I got through it. The doctors said I would definately have facial paralysis, but ther next few days after surgery they came and checked on me, and i have NO facial paralysis. Being home and alive, I was inspired to write my story and share it. Its posted on my caringbridge site. http://www.caringbridge.org/visit/dannaokeson . You should check it out. (:
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Hello Pretty Girl! What a trooper you are. All the best with the BAHA and school. I believe in you.
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Hi Caroline and Danna!
I saw your posts and read Danna's story on caringbridge - WOW!
Danna - you are an amazing young person, and i am so thankful you got through the surgeries and are now on your way to a full recovery!
Having an AN is no fun - thank you for sharing your very inspirational story.
Caroline - i am so glad you found this Forum - the folks here are FANTASTIC, very supportive and caring.
Best wishes with the BAHA on 2/11!
Please keep us posted on your progress.
Sincerely,
Sue
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Hi Danna!
Thanks for sharing your Caring Bridge link. I just read it and it is amazing! YOU are amazing! And gorgeous too, I might add! ;D
I'm so glad to hear you're doing well. You are a shining example to everyone on how to handle bad situations with grace. I have a feeling you are going to accomplish many wonderful things in your LONG and HEALTHY life and will definitely continue to make this world a better place. I know your family and friends are very proud of you.
Keep smiling!
Lori
p.s. If it makes you feel any better, it took me 5 hours to finish homework that should have taken an hour too - and that was long before my surgery! At least you have a good excuse! ;)
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Danna ......
What an inspiring young woman, you are! Thanks so much for joining us here on the forum. You are and certainly will be an inspiration to other people who are diagnosed with an AN at a young age.
Many thoughts and prayers for your continued recovery. ..... and so exciting that soon you will have your BAHA!
Clarice
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Danna,
I read your story and in my opinion, you are a remarkable young lady! You have gone through so much at such a young age and handled it with courage and grace. I'm sure you cried your share of tears and were scared but we have all cried our share of tears and have been afraid of what might happen to us. I am so happy for you that you had such a wonderful outcome with the exception of being SSD (single sided deaf). I am also thrilled for you that you are scheduled for BAHA surgery. Although it is not the same as natural hearing, it is a huge improvement over being SSD. Remember that you are not alone and keep us posted on how you are doing!
Best wishes,
Wendy
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Hi, Danna! I'm the one who talked w/ your mom the other day - live right up the street from you just about and I look forward to meeting you two sometime very soon. Thanks for sharing your CaringBridge story - know others will be inspired!
Will be anxious to hear how things go with the BAHA!
Cindy
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Wow, another inspirational teenager sharing their AN journey. I didn't start mine until I was 60 years old. I can't fathom what it would have been like to go through what you went through at your age. But, you have persevered and we applaud you.
Sue in Vancouver, WA USA
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Hi, Danna ~
Another welcome from a fellow AN patient! Usually, I prefer to be original but in this instance I can only offer my personal congratulations on your successful AN surgeries and echo what previous posters have stated so, following that, I'll just thank you for joining the ANA discussion forums and look forward to your future updates and comments.. :)
Jim
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Danna,
Welcome to the Forum and the Golf Ball-Sized Tumor Club. ;D There are a few of us here. Like everyone else, I'm very impressed with your story and how well you have handled this particular challenge.
I am sure you are an inspiration to a lot of people.
-Tod
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Best wishes to you! You have been through a lot, but have come through like a trouper! God has blessed you with a wonderful attitude and a wonderful outcome. We are glad to hear that you are doing so well. Keep us posted on your journey.
Priscilla
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Hey everyone! Danna had her Baha implant on Friday.
Surgery lasted about 2 hours 45 minutes. Started at 7:30 a.m.
we were home by 12:30 p.m.
She is up and running- no pain killers.
The implant plus packing stuff is pretty intimidating. She'll have the
foam square (about 1 in square) removed on Thursday.
I'll see if she is willing to post a picture but the amazing thing is that
she has not needed any pain pills. She said it does hurt some but
not enough to stop her.
She does not want to go to school until the foam is off. We have tried
to braid her hair to side to cover the implant. She cannot wash her hair
until Thursday.
if that is the biggest worry- no worries! God is merciful and Danna is doing
great! (Thank you, Dr. Fermin Stewart!!!!)
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Danna -
you've definitely been through a lot. I have a 14 year-old daughter and a 14 year-old son and can't imagine either one of them having to go through AN surgery.
A BAHA is a wonderful choice and you'll find that while it won't give you back your normal hearing, it's pretty darn good. In my opinion it's a huge (positive) difference over being single-sided deaf.
Like you, I had no pain from my BAHA surgery; just a little discomfort. You'll find that something over-the-counter like Tylenol will relieve your "pain".
Jan
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Way to go, Danna! ;D Glad surgery is over and you're feeling good.
I don't blame you for not wanting to go to school without washing your hair and with having a foam thing stuck to your head. :-\ Once you can give your hair a good wash, it's pretty easy to cover up the abutment. And if your hair still feels goopy from all the ointment - Dawn dishwashing liquid works great and getting it out.
Lori
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Hi Caroline & Danna:
I read your inspirational story on caringbridge and you are a beautiful, amazing person. I shared this with my husband who also had surgery for an AN 9 months ago. Your page touched my heart as I am sure many others. Best of luck with the BAHA.
Karen
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My 21 year old daughter had a large AN removed at age 16. She also had to have two long surgeries, a few weeks apart, but for my daughter it was on the same tumor. This happened at the end of her sophomore year in highschool. We were able to get her caught up in school and she graduated with her class...and has gone on to college.
So I would say she also has done remarkably well (with the exception of hearing loss on one side). My daughter is hoping to get the Soundbite (rather than the BAHA). This is just a personal preference.
Just wanted you to know there are other young people that went thru this.
Debi
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We used cornstarch(gently massage into the sounding hair) before the shampoo when trying to wash out the greasy ointment ( we had to do this after the AN surgery)
Works pretty well, absorbs so you don't have to wash so many times!
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Very nice story to a tough situation in our AN world. You have to believe that under the circumstances that you are a very special person going into the future. God bless you, Mickey
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Today was Danna's first appointment since her Implant procedure.
We both had stress for different reasons... maybe the same.
They took the cushiony thing off her head. I was scared because I don't like to see blood
or stitches. She probably is scared of that plus the shaved area plus the fact that she has to
"brush" the implant every day.
Tomorrow morning will be tough. She is going to shower and "brush" the area. I will
apply the antibiotic ointment around the stitches. WE'll braid her hair to cover the "cap" over
the BAHA implant. We are both scared.
I feel so wimpy. She has had to go through so many issues and we are both a little
stressed. Definitely appreciate prayers. Danna is going back to school tomorrow. More homework to catch up on...
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Just being a teenager these days is stressful so I can only imagine how all of this has affected Danna. The worst part is behind her now so that helps, but I'm sure each one of these appointments and changes are very stressful for the two of you.
Thinking about you both this morning and hoping all will goes well with the shower, etc. Many prayers for you both as Danna goes back to school.
Clarice
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I am so sorry you have traveled on this road Danna. I know your young, but your strength and fortitude is an example to all that have endured the same as you, and for all of those that have yet to be diagnosed, you will inspire and give hope to many. May God bless you and your family.
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I know she'll do great and I'm sure it will be good for her to see her friends! The first day will probably be the hardest, but it will get easier from there!
Have a great day - both of you!
Lori
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Caroline,
You and Danna have been through so much, I can understand how stressed out you are. Please believe the worst is behind you. You have both been so strong, I hope you will agree when you look back that this part of your journey was much more simple than the AN surgeries and recovery. It really does only get better from here on. Hang in there!
Hugs to both of you,
Wendy
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Stressed so I haven't been in for a while. 1/18/11 received call from Doctors office that Danna's BAHA
had been approved- needed to order correct color and schedule surgery. Went ahead and had surgery....
HOROR.... Received letter saying that surgery had not been approved! I don't have $50k
Doctor says he has letter stating approved
I have asked for copy of letter.
Should my family be bankrupted? I am totally stressed. Danna is finally healing from surgery and is
anxious to have BAHA device on 5/12/11.... what if I cannot pay for it? Would she have gone through
this surgery and not get the device? How in the world can I pay for it?
This is a nightmare.
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Take a very deep breath. I'm confident things will work out.
If the doctor says he has a letter of approval, I'd believe him. Doctors aren't usually willing to do a BAHA surgery without insurance approval since some insurance companies don't cover them. I know my doctor's office would not schedule my surgery until my insurance company sent them a letter stating it was covered.
If by some chance there has been a mix-up and there was no approval, I'm sure the doctor's office will be willing to work with you on some type of payment plan. Chances are also good that they'll discount the cost of the surgery and perhaps even the cost of the processor. My BAHA implant and first processor cost close to $50,000 but by the time my insurance discounted it, my doc got MUCH less. I don't know what processor your daughter is supposed to get, but Cochlear let's doctors set the prices for their processors. And sometimes docs give patients who pay out of pocket their physician's discount (basically forgive the markup they usually get).
Doctors aren't heartless and I'm sure your daughter's doc will know that you agreed to proceed with the surgery with the good faith intention that it would be paid for. He'll work things out with you if the insurance doesn't ultimately pay the bill.
Have faith,
Jan
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Caroline ~
I echo Jan's astute opinion. I suspect some insurance company claims person made an error. Believe me, it happens. My wife used to be a claims supervisor for a major insurance company and 'mistakes were made' - often. Frankly, if your doctor has a letter from the insurance company approving the procedure it will very likely be paid by the insurance company. The only possible glitch would be if he or his office staff misunderstood something in the letter or, quite possibly, didn't submit the claim under the proper code (crucial - and a common error). Not to worry, if that is the case the doctors office can simply re-file his claim under the correct code. It's possible - but not probable - that the insurance company made an error in approving the BAHA. I'm not an attorney but I believe that even if they did make that error, as long as they sent the doctor a letter stating that the procedure was approved, they are legally liable to pay for it. So, no matter the cause of the 'glitch', I seriously doubt you'll be expected to pay for the procedure. However, 'worst case scenario': the doctor's office, would, as Jan stated, allow you both a discount and a 'time payment' plan. Rest assured, your daughter is very likely to get her BAHA. Now, please try to stop worrying. Because your doctor has an approval letter from the insurance company, I'm sure this is going to work out O.K. Really.
Jim
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Hello, I just wanted to chime in and say hello...I can't believe I missed this thread and just now reading about all this!! Wow, what a story and now you are having these insurance issues!! Definitely not cool! Jim and Jan both offer VERY good advice, so try to relax and these knucklehead will realize the error of their ways. Hang in there and please keep us posted. We all have some very good shoulders you can lean on! :)
Jay
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Sorry to have vented on everyone. I will follow-up this week and try to take care of things.
Danna needs to know that I don't know all that is going on with her. I panic as she is now on
Swim team and wants to play soccer.
How do you swim if you don't hear whistle?
How do you play soccer if y ou head the ball and you have an implant?
I am afraid that I wil hold her back from all she is reall yable to do. She is back in several
Honors classes and catching up on all her home work. I think I might be her biggest handicap!
She is singing and playing guitar again... she sounds great. She'll have to learn that she doesn't
need to sing so loudly. However, her voice is lovely! I hope I don't slow her down because she
is totally capable.
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Wowsers
Like Jaylogs, I just came across this thread. what a brave young woman Danna is. I still yet have to read her story and will do so now. Welcome to the forum.
JO
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Caroline -
you don't need to apologize for venting - it's one of the many things we're here for. So vent away - it's therapeutic ;D
I don't have answers to your BAHA questions - you might want to pose them to your daughter's doctor. Another great resource is the Cochlear Community (www.cochlearcommunity.com) - lots of BAHA wearers (including many active teens and young adults) there.
Holding kids back is a fault of many parents - I know I'm guilty of it. Don't be so hard on yourself.
Jan
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Couple of notes:
The device has been covered by insurance- not as expensive as originally thought. Only 10k
The doctor is working on getting his potion paid but not too concerned.
Next week Danna should have the device attached and tuned.
Is there ever an Atlanta area get together? Physcially Danna is healing very well. She has
struggled a little with feeling isolated. Had a few rough months.
I think she is doing better but I know she'd love to talk with other people who have been
through the same experience and understand "the feeling".
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There is information on ANA support groups on the main page of the ANA website - and I believe there is an Atlanta group.
If you can't find info., perhaps PM cindyj. She might know.
Jan
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There is information on ANA support groups on the main page of the ANA website - and I believe there is an Atlanta group.
If you can't find info., perhaps PM cindyj. She might know.
Jan
Yes, she does know - she's the support group leader :D Caroline, the next meeting is scheduled for Jul 23 at 10:00 - did you ever get on the ANA mailing list? If so, you should receive a notice about the meeting w/ the particulars. If not, let me know and I'll send you a PM w/ the info. Do you still have my phone number? We had 2 BAHA reps at our last meeting, so would be great if you guys could come to share your experience with the group...a couple of other members had the implant done recently also. You guys could all "compare notes."
Hope to see you and Dana there!
Cindy
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Cindy -
didn't realize you were the leader. My bad ::)
Jan
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HI, Everyone.
Cindy- I am not sure if we got signed up for the Newletter. I'll have to double-check.
July 23rd...we will be visiting relatives. We'll have to catch the next one.
Danna has her BAHA. Doesn't wear it.
So many rules- no wet hair, no sweating, etc. She has adjusted to not hearing on the one side.
She said she'd probably only wear it for lectures.
She is embarrassed when it produces feedback. (If she leans against it, if her hair brushes it, etc)
I think she'll appreciate it more when she is older. Right now she is afraid that if she is too active she'll lose it.
Emotionally she has more good days than bad. Still struggles some times but is doing much better.
I truly appreciate all the prayers you gave Danna.
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Caroline -
some of these "rules" confuse me. Who gave them to Danna?
No wet hair? No sweating? These aren't rules as far as I know. I attach my BP100 to my head w/wet hair all the time and have had no issues. I also know for sure that I sweat when I wear my processor. Although I don't wear it when I exercise (my preference), I do wear it all summer long and it gets hot and humid in Chicago. I've also worn it in other hot climates (San Diego, Colorado, etc.) in the summer months. The biggest thing with moisture - like wet hair or sweat - is to make sure the processor is allowed to dry out when it's not being worn. Danna should use the jar of drying beads (they come with Cochlear processors, I'm not sure if they come with Oticon processors) or she should look into a dry and store (example http://www.dryandstore.com/ ) In fact, she should use the beads or a drying box every night when she removes her processor, after removing the battery.
To get the full benefits of the BAHA, it should be worn daily. I only remove mine for showering, sleeping, and exercising (again, my choice); lots of wearers don't remove the processor for exercising. The more you wear it, the more you get used to it - and the more it becomes a "part of your life".
BAHAs are meant to let the wearer live a normal life - which includes wet hair and sweating. It shouldn't be worn for times when the head is totally submerged - showering, swimming, etc - because the battery will burn out and the processor will get damaged.
As far as the feedback, that's a programming issue. I can reach up and touch my BP100 and it won't even whistle. Danna should see her audiologist. Sometimes the solution with feedback is as simple as turning off the feedback manager.
Jan
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Welcome to the forum..Sorry that you had to find us, but so glad to hear your daughter is doing so well. It is hard enough to hear the diagnosis as an adult, but I can't imagine having my child go through it. She must be a very brave girl.
So glad to hear that the doctors were able to help her.
I am new to this forum too as I was just diagnosed in March and had Gamma Knife done in April. I have to wait 6 months for my first MRI.
Hope we can be of help to you and your daughter.
Cheryl :)