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Physicians / Looking at Surgeons and Treatment facilities
« Last post by Citadel mom on January 15, 2018, 04:41:02 pm »
Diagnosed with a 3cm AN, know treatment option is Translab. based on size and already have significant loss of hearing with mass effect on brainstem and cerebellum. Already met with Dr. Rivas and Thompson at Vanderbilt, really liked both of them and facility, but concerned with distance (6 1/2 hour drive). Any body had surgery at Vanderbilt with these doctors and don't mind sharing their experience? Had an appointment already set for Duke, Dr. Zomorodi for 25th don't know if should meet with him too just because closer (3 1/2 hours). Any input on him and Duke would be appreciated too.
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Hi Alan,

I'm a 52-yo male and I also have a 3mm Acoustic Neuroma in my right ear.  It was diagnosed in Oct 2017.  I'll be going for my second MRI this March (six months) to see if it's grown.  Interesting you were told to wait 1-year.  I've just started taking a daily, low-dose aspirin on the advice of my doctor.  It has been shown in some cases to slow or even stop tumor growth, but I realize that's a long-shot. 

As for the tinnitus, I think mine is pretty bad too, although I really have no idea how it compares to other's.  I find it very hard to explain to my wife & kids just how bothersome it is.  As you know, it just rings 24-hours a day, 7-days a week, this high-pitched almost electronic whine.  You would think I'd have a constant headache from it, but I don't.  Maybe I'm just used to it or I have a high tolerance for it.  Interestingly, mine doesn't really vary in pitch or loudness as your's seems to.  When it's very quiet, like now at home alone or in bed at night, it's very loud.  But then when I'm in NYC for work, the environment is often so loud I barely notice it.

You're lucky your hearing is still good.  My hearing has always been excellent, but it's starting to go in my affected ear.  Before this, I'd be the one person in the room who would hear something before anyone else.  Now the hearing in my right ear is maybe 50% of what it was.  If I'm in a crowded bar or restaurant or concert or some other large social gathering, hearing is real problem.  And from what I understand, it doesn't get better. 

My goal is to find a solution that preserves what's left of my hearing, and eliminates the tinnitus.  I'm not sure which is more important to me.  The tinnitus is terrible, but I hate the thought of being deaf in one ear, and should anything happen to my left ear hearing, well, I'd be totally deaf.  My understanding is that surgery has better odds of preserving hearing & eliminating tinnitus, especially while the tumor is still relatively small, but I'm no doctor.  I think the good news for people with very small tumors is that we do have time before a decision needs to be made. 

Let me know if you have any questions.  Happy to share thoughts & results I work towards some sort of resolution of this. 
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For those in the 'watch and wait' status / Re: Hi from overseas Europe
« Last post by SP on January 15, 2018, 03:16:41 pm »
Hi Siila,

finding out about having an AN and having that yearly MRI check up really can be a stressful situation, I'm sorry you're going through this. Everyone's situation is unique and it is difficult navigating the information and options for next steps...For me the information on this discussion forum was very valuable to understand the process and options (I spent alot of time on research --some may say too much-- but it was also a way of coping at the time).

It may be worth asking your doctor if they can do your MRI without Gadolinium, as i recently discovered (after about 10 MRIs over the last 3 years) , that they can do the next one without GAD.

its really difficult to maintain peace of mind when you are going through this difficulty but anything you can do to reduce stress may help to manage somewhat (it sounds like you've started this with mindfulness practice)... i hope that your way forward becomes easier for you.
Stella
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Hearing Issues / Re: Opinions about BAHA
« Last post by alabamajane on January 15, 2018, 12:45:56 pm »
Hi MaryQ,
I did have some minor irritations with slight drainage in the beginning ; however, they will subside with good cleaning hygiene of the area,, after healing,,,, it’s been about 4 yrs since I had that surgery but I don’t remember any serious infection that wasn’t easily cleared. Hang in there,, it does get better after healing of the area.
I’ve read of a few people who had issues after healing but not many as I remember.

Good luck,, maybe others will respond,,

Jane
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Eye Issues / Re: Scleral lens problem - looking for suggestions and tips
« Last post by tugnutt on January 15, 2018, 09:59:48 am »
Jill Marie, Thanks so much for that great information and advice!  It turns out that my scleral lens was VERY scratched and perhaps warped, probably because I was taking it out frequently, and I wasn't very careful... and probably caused the damage. I had a backup lens that I am now using, and feels pretty great, so am wearing that.

THAT SAID, until I had the neuroma surgery, I used soft lenses for years.  I still wear one in my right eye for distance (monovision) sometimes.  The lenses are Acuvue 2, I am considering trying one of them to see how it feels.  I am a bit worried about it getting stuck in my eye... any suggestions about that?  Like I said, I have worn soft lenses for decades, and I have zero problem with inserting and removing them,  and no problem with the large and hard scleral lens.  Maybe I just need to be bold and give it a try!!   If that lens works, I may pursue the Oasys Hydraluxe! THANK YOU!!!
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Hello
I have a 3x3 mm AN in my right ear and it is in the modulus of the
cochlea ,
my problem is a loud alternating tinnitus which is unbearable,
I was given options of wait and do another MRI in one year
versus cyberknife
surgery is not on my list as it is located in difficult place
my hearing is almost normal in my right ear,
each specialist gives different opinion, but I am thinking of going to
CK , I am 66 otherwise healthy
does anyone has this kind of tumour
thanks
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Hearing Issues / Re: Opinions about BAHA
« Last post by MaryQ on January 14, 2018, 10:57:45 pm »
Hi everyone.....Just wanted to give an update since my prior post.  I went to a different doctor who does many more BAHA surgeries.  He was over an hour away but it was worth it.  I had another headband trial and it worked out much better than the original one. They let me keep it longer and I tried it out in different situations and it seemed to help. I went to a noisy restaurant and was able to hear the waitress on my left side!  I understand that it will even sound better with the abutment.  The office was able to get approval from my insurance company and I had the surgery just before Thanksgiving.  I am very excited to be getting my Ponto in February.  Right now I am still having a little irritation and possible infection around the abutment.  The doctor has me on oral antibiotics and Bactroban.  This is getting me a little depressed and I hope I will not be battling infections all the time.  The doctor said it was not unusual to have an infection right after the surgery.  Has anyone had this problem and if so did it get better with time? 
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Thank you for sharing your regimen.  Interesting about your experience with mercury amalgam removals.  I am in the process of getting this done, and my 3 remaining amalgams are all on the the left side, the same side as my 1.4 cm AN and hearing loss.  I am also taking supplements, Frankincense, and using homeopathy but not there yet with the meditation.  Where and how do you use the frankincense and do you use it straight or diluted?  I have been applying it in a carrier oil to help with absorption in front of and behind my ear but I know people use it internally straight (neat). 
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AN Issues / Re: 1 Month after AN Surgery (4 Month UPDATE)
« Last post by CompassGeorge on January 13, 2018, 11:38:21 pm »
Thank you Colleen, I wish you continued success in your recovery!
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Eye Issues / Re: gold weight and MRI
« Last post by Jill Marie on January 13, 2018, 09:39:24 pm »
Joan,  Yes, there is usually someone with worse issues but that doesn't mean our issues don't merit concern and an occasional pity party, we still have to deal with things we certainly wish we didn't have to. 

Your eye has been gritty and you close it for comfort but the eye doctor says all is good?  You shouldn't have to close your eye to feel okay.  As you mentioned about the facial swelling, doctor seems to not know how to help with that, perhaps doesn't know how to help with your need to close your eye.  I could be wrong but it seems like it's time to check with another eye doctor.  Also time to look into a contact lens as you mentioned you are going to do.  It doesn't mean your eye doctor isn't a good doctor it just might be that the doctor doesn't usually work with patients like you.  I REALLY LIKE my first eye doctor but as he said, "I can't help you."
 
I can't help you with the facial swelling, never had that problem.

Goodluck, Jill ;)
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