Recent Posts

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71
Inquiries / Re: New implant screw, new abutment, recent surgery
« Last post by donjehle on April 04, 2024, 10:03:09 pm »
Thank you for sharing this, james e.  This is helpful information for those of us who may be considering BAHA surgery.

Best wishes on your continued recovery!
Don
72
Inquiries / Re: Should I be concerned
« Last post by donjehle on April 04, 2024, 10:00:14 pm »
Hi Laura B, and thanks for posting in the ANA Forums!

I'm not a physician, and cannot speak authoritatively on this subject.  But I am a little surprised that no one told you anything after your first MRI.  Someone should have shared with you what the first MRI showed.

It's not unusual to have a second MRI six or seven months later since the first one typically provides a baseline, and the one seven months later reveals any potential growth since the first one.

I don't know why your specialist would have ordered a second MRI if he/she didn't see something on the first MRI, but I'm totally speculating on what they might have seen.  It is extremely important that your specialist communicates clearly with you, especially with something as serious as an acoustic neuroma.  If the specialist does not communicate better with you in the near future, I would seriously consider going to someone else who will take the time to explain exactly what is going on.

Best wishes on your journey!
Don
73
Hearing Issues / Re: OSIA OSI300 Implant
« Last post by donjehle on April 04, 2024, 09:43:19 pm »
I have read some about this device, and it looks very promising.  Please keep us posted on your experience with it.  And thanks for sharing this on the forums, Angela330.
74
Facial Issues / Re: taste and drip
« Last post by donjehle on April 04, 2024, 09:35:15 pm »
Welcome, FluTeacher, and welcome to the ANA Forums, and thank you for posting!

I'm wondering what you think may have caused these symptoms after your translab surgery?  Do you think the surgeon nicked a nerve?  Or what is your guess?  And what are the doctors saying about it now?

Best wishes on your journey!
Don
75
Hearing Issues / Re: Bone Conduction Headphones
« Last post by donjehle on April 04, 2024, 09:27:07 pm »
Please let me know, Carrie, if you try any of them and what you think of them.

Thanks,
Don
76
Hearing Issues / OSIA OSI300 Implant
« Last post by Angela330 on April 04, 2024, 01:25:30 pm »
I am looking at getting an OSIA OSI300 implant to help with my SSD.  This device would allow me to continue to get MRIs to check on my residual tumor.  This device was just launched in October of 2023 so I am wondering if anyone has this implant.  I have an appointment on April 11th for a simulation to see if I would like it.  I am curious to see if anyone has this new implant and their experience with it. It's my understanding that the operation to implant is about 90 minutes and then a 6 week wait for it to heal before it can be activated.   I am excited to actually have an option available.   
77
Eye Issues / Re: LacriLube Eye Ointment
« Last post by Director on April 04, 2024, 09:34:37 am »
Dear hardproperties@att.net,

I hope that others will share their experiences here, and providing some links below that might be helpful for you.

The Dry Eye Shop
https://dryeyeshop.com/

The Dry Eye Foundation
https://www.dryeyefoundation.org/

If you want to connect with ANA volunteers experiencing dry eye, reach out to mentors@anausa.org.

Take care,

The ANA Team
78
Eye Issues / LacriLube Eye Ointment
« Last post by hardproperties@att.net on April 03, 2024, 03:08:27 pm »
I have been using Refresh LacriLube eye ointment since 1983! That is when I had my 3.5 cm acoustic neuroma removed. As a result of the surgery I am deaf  on the left side, dry eye on left side, and facial paralysis on left side. This June it will be 41 years! Alargan stopped making LacriLube eye ointment. I called them and they said it might be back on the market in April or May. I started using Equate Eye Ointment from WalMart, which is exactly the same as LacriLube. But then it was recalled by WalMart (for the second time) as possibly being contaminated. I PANICKED! I absolutely must have my eye lubricated 24/7 or it is extremely painful. What are you all using for eye lubrication? I also found on Amazon a product called Optase, which works pretty well. It is more expensive and I don't care for the packaging. If anyone has a good alternative to LacriLube, please let me know. Thank you.

79
Facial Issues / taste and drip
« Last post by FluTeacher on April 03, 2024, 11:20:06 am »
I had translab surgery July, 2022. About 7 months later I noticed a decrease in taste sensation and over time felt I was dripping fluid from the roof of my mouth that needed to be sucked out.  The taste of that secretion has gotten worse.  Occasionally it leaks from my nose, and down my throat and the taste is rancid vinegar.  It's awful not tasting food, barely getting sweet. I can taste salt (even in Ice Cream which I have no tolerance for - its too cold and feels as though it burns my mouth).  MRI an CT scans have conclude negative for CSF yet  that how it feels. Occasionally cranial pressure, leaking, occasional nose bleeds, blah blah blah. Any thoughts or guidance would be very much appreciated.  I am very frustrated and have a har time sitting up for long periods of time. Symptoms worsen with exercise. I do feel better lying down. thank you for listening to my rant.
80
Inquiries / Re: Medical marijuana for AN tumor control or elimnination?
« Last post by mwatto on April 03, 2024, 12:37:25 am »
I use CBD quite a bit and its very helpful for nerve pain (I have geniculate neuralgia caused by my AN). I use CBG for inflammation, full spectrum CBD for sleep (has some THC in it and goes well with melatonin) I am about to try CBD with CBN too. It def helps me with symptoms. I take a few other things. My tumor has shrunk but I suspect thats from the treatment I had 5 years ago.
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