ANA Discussion Forum
General Category => AN Issues => Topic started by: Jwh on May 08, 2009, 02:00:01 pm
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Ok first off the good news is that the 3 month scan showed no tumor! WOOHOO.... Thank goodness ( :
Next bad news, I showed the surgeon my hearing test on my "GOOD" ear and he has informed me that I have Otosclerosis disease. That is why my low frequency tones are muffled. This is a progressive disease which means years down the road I will need a hearing aid in that ear. I mean WTF! Now my good ear will adventually loose hearing too ) : I felt like someone kicked me in my stomach!
Treatment surgery but not feasible for me the doctor said b/c of my other ear being profoundly deaf. Next option some oral fluride treatment 2x in the AM and 2x PM for ONE YEAR. My doctor said this should slow the progression. Man ol' man 35 years old and already have dealt with a lack of better words a lot of CRAP!
Anyone please chime in could use some words of encouragement. Also does anyone have Otosclerosis or heard of it before?
Thanks,
Jennifer
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Jen,
Otosclerosis is really unwelcome news! It's GREAT that you are tumor free, though! I seriously doubt that you will be going deaf eventually in your good ear because medicine advances at such a rapid pace that there is every reason to believe that your hearing will be saved in the future. Meanwhile, any delay in the progression of the disease will help get you there. I would take anything that helps that. Did you say oral fluoride? Like the one that babies take?
Eve
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Jennifer ~
Congratulations on your 'clean' MRI scan! There seems to be a lot of those, recently. :)
The diagnosis of Otosclerosis in your 'good' ear is certainly depressing. No wonder you feel frustrated. I believe that is an abnormal bone growth and can be treated but, unfortunately, is usually progressive. However, it may well be many years before it becomes necessary for you to wear a hearing aid, which, I admit, is a positive spin but also a realistic observation. Besides, modern medicine may have conquered this problem in another 20 years. Who knows?
You have your health and your AN is apparently vanquished so those are definitely things to be grateful for. That and your family and friends are what really count. Everything else is fleeting and usually uncertain. Of course, you have a bunch of folks here that also consider you a friend - and want only the best for you. Many of them include you in their prayers (Jim sheepishly raises his hand). That counts. :)
Jim
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Ok first off the good news is that the 3 month scan showed no tumor! WOOHOO.... Thank goodness ( :
Next bad news, I showed the surgeon my hearing test on my "GOOD" ear and he has informed me that I have Otosclerosis disease. Also does anyone have Otosclerosis or heard of it before? Thanks, Jennifer
Hi Jennifer! I am so HAPPY your 3 month scan was clear - awesome!! 8)
Now about the otosclerosis... I would first ask more questions about how that is determined. This was my first diagnosis before i insisted on the MRI and they found the AN. Anyway, if the diagnosis is correct, then i think too, that it could be years before you need a hearing aide. (My grandmother had to wear the big ugly thing behind her ear and a cord running to a box that she hid in her bra-but when she wore the hearing aide, she could hear, even us rowdy kids.) I often think of her and how far modern medicine has come today, with so many options. My grandmother was a teacher and an amazing person. At 80+ years, i took her on her first commercial plane ride to CA. She never left the hearing issues stop her. She is my inspiration today, as i am sure she is for my sister, aka Bigsister.
I have never heard of floride treatment for otosclerosis, but i would try it. If it even delays the hearing aide, that would be good.
Now, since the doctors believe my grandmother also had otosclerosis, i am right there with you. No indications today, but i will be mindful of this in the future.
Please keep us posted. I certainly would like to know about the treatments and if they are working.
My thoughts and prayers are with you today.
Stay strong and know we are here for you.
Sincerely,
Sue
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Congrats on a clean MRI As for the bad as the others have stated, with advancement in modern medicine, it may not be a problem in the future. I have some hearing lost in my good ear. For now my good ear is over sensitive just being 1 month post op. But I understand that in the future I too will have to consider a hearing aid. But it is better wearing an aid than being totally deaf. MY wish is for a medical miracle to bring hearing to my AN ear (SSD). But for now I dont find SSD a problem. A hearing miracle is in my prayers for all of us going thru this. But we are alive and there are some way worse off then we are....therefore I am happy and my situation is doable and livable...
JO ;D
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I looked up both the otosclerosis and lymphangioma on Google. I am not real good at giving good explanations of cause any more so I will let others look it up too but did see the fluoride mentioned as used in one type. It looks like proabably is a hereditary type of condition. The lymphangioma is a collection of lymph vessels but also talk about skin spots which doesn't seem like the brain type one. Sorry that I do not do the whole detail but it is out there.
Cheryl R
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Well, the good news is indeed good, but the bad news is a bummer! I am so sorry you had to get this kind of news. We are all feeling for you, as we know that any threat to our hearing is something we take very seriously. Keep us posted on how you are doing and how the treatments are going.
Priscilla
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Jennifer~
So glad to hear that your MRI was clean!!
I found out a few months ago that I now had an eye disease in my GOOD eye where basically I would become BUG EYED in my good eye & the pressure would be so that the first line of attack is surgery on the facial bones. Let me tell you, I know EXACTLY how you are feeling. I thought the same thing - "I am only 38! I really don't need anything else going on with my face..." Basically, I am going to have one eye that is SUPER big open and one that is practically sewn shut (which was also the news I got that day for my AN eye if we can't get the weights to work). I was pretty upset for a few hours - I think the worse was the thought of having to tell Dave & my mom. Then I thought (as I always do) that there are people a LOT worse off than me - it still sucked for me - but at least I am alive & here and even if I couldn't see my kids some day, at least I would be with them. I realized that if I have walked around for 13 years with a funny looking face, the people that really care about me, would CONTINUE to love me, even if I did look like Quasi Moto!! ;D We decided to just pray for the best and that maybe some mistake was made or it wouldn't progress with such intensity...well, when I went back & was measured for the 3rd time, the Dr. said that it "MIGHT" not be that because the measurements were different. To me, that is an answer to prayers and we are just going to keep on praying (as are many others)...it may not be a long term solution, but I am just going to take what I can get.
I share all of that, not for sympathy, (only a few people on here knew about that from PM's) but just to let you know that I KNOW what you are thinking and feeling. Hopefully, that can give you a little hope that things will turn out different than they seem now. I will pray for you daily and I also agree that we never know what Modern Medicine will come up with...when I had surgery, there was no such thing as a TransEar or BAHA!!
Please PM me or we can chat on the phone if you would like!
K
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Jen -
I'm glad to hear the news of no tumor regrowth but, like everyone else, I am saddened by your other news.
I wish I had some profound words for you - and you too, Kay - but honestly I'm at a loss here.
All I can do is offer my prayers and support to both of you and tell you I'm hoping for the best.
It doesn't seem like nearly enough, but hopefully it's something.
Hang in there, both of you.
Jan
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I did not in any way want to detract from Jen, I just wanted to share with her that I know what she is going thru. I'm OK with everything now and just don't think about it - I don't have time and it is futile for me to waste time on the "what ifs" that might or might not happen. I can't do anything about it (I have checked out to see if there is any vitamins or anything that I can be taking but they just don't know much about it. One article referred to it as a "bizarre phenomenon" - I guess I specialize in those! ;)) - except pray - and so whatever happens will happen!
K
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Hi Jen
I'm glad to hear the good news about your clean MRI but also very sorry about the hearing in your good ear. I hope the fluoride treatments are a big help. As Eve said, with the advances being made, there is a chance that you might never be completely deaf in your good ear. You are in my prayers.
K - I don't know what to say, you've already been through so much it seems very unfair that you have to endure this new problem. I really admire your attitude though. It brings to mind something I read (I can't remember where) "Life isn't always fair, but it is good." It seems that in spite of all your health problems you are blesssed with a wonderful family and a wonderful life. Good for you.
Wendy
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THANK YOU THANK YOU THANK YOU for all of your responses!
Although the new diagnosis took me off guard, I'm now putting it into perspective :) I'll try the treatment and hope for the best. You guys are so wonderful and always have such great advice and good thoughts............
I'm going this week to speak to another doctor about it and just get a handle on the situation. Jen is ready for her next challenge 8)
K - thank you for sharing with me your challenges. I think you have many words of wisdom. You will remain in my prayers. THANK YOU>
Let me not forget to wish everyone a HAPPY MOTHER'S DAY.
Love ya,
Jen
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Jen-Glad to hear that you have a new perspective on your new problem. It is a shock when you get any kind of news, big or small, on your health, because dang we've already been through so much! And then one might think. OKAY then, now what?????
Just another thing to process in your already busy life.
And Kay, you have my sympathy. You are a trooper and have a great attitude, and like you said. You don't have time to worry as much as you would like.
Prayers are good and are going out to both of you.
Both of you I will follow this thread.
Hang in there, and Happy Mother's Day.
It's all about MOMMY today! (Jen, you have kids?)
Maureen
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Maureen,
I have two children. My daughter, Caitlin, is 6 and my son, Sean, is 2! They keep me very busy and by 7:30 PM - I'm done! Tired, tired and tired! Hope everyone is having a great day. My husband got me a Pandora bracelet for Mom's day - I love it! It has an angel on it as I feel I have one looking over me :)
Jen
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Woohoo on the clean MRI!
I honestly can't imagine how mad at the world I would be in your shoes about the otosclerosis. My hubby has/had that. He had surgery in one ear and has pretty good hearing out of it. Not perfect, but serviceable. He found out last winter that he has it in his other ear as well, but it's not bad enough to warrant surgery at this time. Hopefully they'll come out with better option in the next few years.
Vonda
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Jen,
I am late getting in here and just wanted you to know that I'm praying for you- you've had quite a lot to deal with and I just love your spirit. I'm also glad you are getting a second opinion.
Enjoy your Pandora bracelet. My daughter bought me one after I was first diagnosed with 3 beads. One was her birthstone, one was the "journey" bead (for the journey we were about to take together), and the 3rd was a bead that had a bunch hearts on it that I attached a meaning of "friends and family" to. I've since just about filled it up, but those original 3 beads will always be the focal point and always brings me back to how lucky I am to have such a wonderful daughter, friends, and family!!!
I can't imagine a more perfect gift for you - the beads are wonderful and you can build something that is very special to you. What a great husband!!!
Take good care,
Kathy
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Thanks Kathy! You're really sweet..... I know the pandora bracelet has a lot of meaning to me! I have an angel, heart, and a bird on it right now. The bird represents the red cardinal that I see when I'm facing tough times..... I did see the journey charm in the catalog and plan on getting that....
Take care,
Jen
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Hi Jen,
I too am sorry for the hearing problem but am glad about the clean MRI. I'm glad you're feeling more encouraged now and at least know what's going on.
Jen and K - can't really add much to what everyone has already said. I wish you both the best and will pray for you both. You two are helpful and encouraging to many others!
Happy Mother's Day!
Keri
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Hey Jen -- Good news about the MRI -- I know where you stand though. I'm SSD in my AN ear and wear a hearing aid in my good ear. It isn't fun. Rather than spend time on the Forum talking about the difficulties, please feel free to PM me about hearing aids and the challenges.
David
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Hi Jen,
I'm with you on the otosclerosis thing. I first went to the ENT for a hearing loss in my right ear. That plus the MRI was originally thought to be an AN, but turned out to be a meningioma. I still have the otosclerosis and will need a hearing aid in the very near future. I still have decent hearing in the other ear, but expect that to fail eventually too, since it is already diminished. But....I don't have a brain tumor at this moment, and I am grateful to have come through that in pretty good shape. I just have to deal with what is in front of me at the moment.
My thoughts are with you and I hope that things work out as well as they possibly can! And I love the Pandora bracelet I have too! I think my husband loves it even more because now he isn't in a quandry about what to buy me as a gift. :D
Priscilla