Watch and Wait > For those in the 'watch and wait' status
First consult today - watch and wait? Sudden hearing loss, anyone?
ppearl214:
great profile name! :)
Hello and welcome! Hoping to meet you at the ANA Symposium in Chicago... I'll be there....
I have heard of steroids and even antihistimines (ie: Benedryl, etc) that have helped with sudden hearing loss, but not sure since you haven't had treatment yet on your AN. I only experienced short term hearing loss, but after my radiation treatment, which, like you, resolved after a short course of steroids.. and 3 yrs later, my hearing is the same.
Again, welcome!
Phyl
Keeping Up:
Hi and welcome
I had just left a long post - and it disappeared.
MRIs - I have been told by my medical team - 6 month follow-up, if no growth, then 12 months. I have negotiated 8 mnths. I am in public health care with long queues so that also might make a difference.
Hearing preservation - I haven't been given positive views on hearing preservation from the ENT, the neurosurgeon or the GK radiation oncologist. Hearing loss will continue to deteriorate in W&W (I have a 10 year study on the conservative mgmt of ANs - mild hearing loss over the period, in particular for intracanicular tumors - if you want it, send me a PM with your email address). Surgery - 50% preservation. GK - on average, not likely to keep useful hearing beyond 10-15 years was my understanding - but that can be challenged by other studies. (No CK in Canada - so not applicable). Hearing preservation isn't my priority - I want to avoid treatment if possible despite the risk to hearing (the least of my worries). I am an accountant so hearing may not be as valuable to me as to a musician.
Good luck and welcome (again).
Ann
mk:
Hello and welcome.
I experienced sudden hearing loss twice. Once a couple of months after my diagnosis and once 6 months after receiving GK treatment (which is a form of radiosurgery). Basically I went from full hearing to total loss of word recognition and about 60% loss over the entire frequency range overnight in the first case and suddenly in the second. I also had severe tinnitus at the same time. It all went away after about two weeks, following a very strong dose of prednisone (steroid). I haven't had another episode since and my hearing is almost back to its previous levels.
Although sudden hearing loss is not very common, it does occur. Gradual loss is more common with ANs, and is due to the slow destruction of the nerve. This is irreversible and may happen even if the tumor doesn't grow. However sudden hearing loss may be due to swelling (tumor induced edema), which slows down the flow of blood to the nerve. Steroids reduce the inflammation, therefore if taken soon enough blood flow is restored and hearing may come back. And as your doctor said, unfortunately there is no guarantee that it won't happen again, and no way to predict if it will.
Your AN is still quite small, and you were fortunate that your doctor responded quickly with steroids to your hearing loss. You have a lot of time to research, while you are waiting for your 6 month MRI. On the issue of hearing preservation, there was quite a vivid discussion about it some months ago, Tisha and Tumbleweed come to mind, they are both members who were concerned about conserving their hearing and chose to have CK. You may want to seek their posts.
Don't hesitate to ask many questions, we will be glad to help as much as we can.
All the best,
Marianna
doinoc:
Hello and welcome, I've been in w/w since 2002 and ready to take care of things real soon. I had no hearing issues at all at time of discovery of the tumor. My symtom was all balance and dizziness. 2 years into w/w i had sudden hearing loss. literally overnight. 3 months of steriods didn't bring it back. I've been without serviceable hearing for over 2 years now. very sensitive to noise and loudness and constant tinnitus.
Hearing is no longer an issue for me as far as preservation. But i wouldn't change the w/w mode I've been in. I've avoided surgery for a good bit of time and still only have a 1.5cm but now i feel my symtoms are telling me its time. I don't think radiation is my best choice for my particular symtoms although i wish it was. still doing a bit of reachsearch and reflection.
Bless you and peace in this journey
Deb
leapyrtwins:
Life -
you should consult with one of the doctors at the Ear Institute of Chicago (www.chicagoear.com). They do both radiation (Gamme Knife) and surgery. Their website is slightly outdated, but they are the top AN docs in the Chicago area. My neurotologist is Dr. Robert Battista and I highly recommend him. His partner, Dr. Richard Wiet, is also a very good doctor. Dr. Wiet's son Mark is new to the practice - not as much experience as the other two docs - but I hear he's had good training.
If you'd like more details, please PM or email me - you'll find my email info. listed in my profile.
Best,
Jan
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