ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Kate B on April 05, 2008, 06:00:34 pm
-
My question is to find out how many on this site actually retained usable or serviceable hearing after radiation treatment according to Gardner-Robertson? (see definitions below). If not, when did you lose your hearing?
Hearing preservation has three defined states:
maintenance of hearing within the same hearing class,
preservation of hearing at a "useful" or "serviceable" level (Gardner-Robertson score of 1 or 2), and
maintenance of some measureable hearing function.
-
Hi Kate,
For me, based on base-line hearing tests done at time of initial AN diagnosis.... to 22 mos post-CK, I have retained 100% of my hearing for what it was at time of CK.
Phyl
-
I've lost 15-20 dB in high-frequency hearing at 7 months post-CK, but my mid and low frequencies are the same. I don't remember the G-R scale off-hand, but I can hear to talk on the phone, which I find "useful." I'm hopeful that my hearing will remain stable or improve as residual swelling diminishes.
-
At 7 months after GK, they redid hearing tests and they were exactly same as the month before GK = no loss.
BTW, the follow-up MRI at 6 months (I'd postponed it) were very slightly swelling (hopefully temporary) of the AN and some greying in center indicating, hopefully, necrosis.
Dana
-
BTW, the follow-up MRI at 6 months (I'd postponed it) were very slightly swelling (hopefully temporary) of the AN and some greying in center indicating, hopefully, necrosis.
Dana
Dana, is that a new MRI result? It sounds good to me, the swelling is typical and I'm sure will turn out to be temporary, and the darkening of the tumor is a good sign that its days are numbered. Congratulations!
Six months post-CK, my hearing is essentially unchanged, with maybe a 5 DB drop in the low frequencies, but that could be the testing - it was not the same audiologist.
I would like to add that with radiation treatment, the death of the tumor is a slow process. Additional hearing loss in the months following treatment is often just the AN itself, doing its final dirty deeds before dying, and would have happened anyway if there had been no treatment. This sort of thing also applies to some cases with surgery, where it is not the surgery itself, but the AN, that causes a facial nerve issue or the like. When in doubt, blame the AN, not the treatment.
Steve
-
Sadly, for me, my hearing went down the drain really fast and I am "severely" deaf on the left. However, that was before GK, and since GK, I don't think it's changed much. Of course, it's not going to make much difference if it gets worse. ;) I really was hoping it would get better, but I guess that's deemed medically impossible after the nerve has been damaged this much. Bummer!! :( Ah, well, that makes us appreciate the fact that nature was kind to give us two ears! I cheer anyone on that is lucky enough to retain their hearing after an AN has moved in.
Sue in Vancouver
-
Hi Kate,
So far (almost 8 months post-radiation), my hearing is exactly the same as it was when I was diagnosed. I need to appreciate that fact more. With my balance challenges, I tend to forget about what isn't bothering me!
Betsy
-
Hi Katie,
My husband had 40% hearing loss in his right ear when he had Gamma Knife 18 months ago. I am happy to report that his tumor is slowing shrinking and his hearing has remained the same.He does have tinnitus in that ear which he had before gamma knife. Dr Lunsford at the University of Pittsburgh did his procedure. I cannot say enough good things about Dr Lunsford and his worderful staff.
We are now looking into a new treatment for the tinnitus.. www.neuromonics.com
Good Luck,
Lisa
-
Hi Lisa! Im presently on watch and wait. If it wasn`t for the tinnitus I wouldn`nt know their was anything wrong. Anyhow, I am presently on Neuromonics for a little over 2 months now. Just went into stage 2 which will take 4 more months. So far so good but I`m not really going to say much untill it is completed. I belong to ananj and probably will be schedueled to say something on it in Oct. this year. I just want to be sure before I can give it my blessings. Mickey
-
How expensive is this Neuromonics? I looked at the link. Interesting. It would be wonderful if this worked like it says it does.
Sue in Vancouver
-
I have retained my hearing at almost the same state as before my diagnosis...
GM
-
Just had my second hearing test- Although I was up 5dc's on both the left and right ear, a 5 dc change is within the margin of error- so basically, I have no change.
It is important that you get the same group or tester doing your hearing test. I have a set of hearing tests from Sacramento ENT which uses different equipment than Stanford ENT..
Hope this helps, Annie
-
late answer to your question, Steve... yes, that's my recent MRI, done in early March, first one after GK in July. Ya-hooo, yeahhhh!! Fingers crossed!
Thanks for asking...
Dana
-
I have not had follow up hearing test but I believe that my hearing is basically the same as pre GK. I continue to have the tinnitus but that was the same before also. Still talking on the phone etc with my affected ear. Only time I have problems is if someone is whispering to me, I have to turn my "good ear" towards them.
Best wishes!!
Michael
-
I'm four years out from having a 1 cm. AN treated with LINAC (linear accelerator) at UF-Gainesvillle. I've retained all of my hearing and my 4th yearly MRI a month ago shows the tumor has stopped growing.
Good luck to you,
Elizabeth
-
I would like to add that with radiation treatment, the death of the tumor is a slow process. Additional hearing loss in the months following treatment is often just the AN itself, doing its final dirty deeds before dying, and would have happened anyway if there had been no treatment.
Steve
That's a really good point, Steve, and one which I hadn't considered.
It's heartening to hear so many success stories from people who have not had their hearing diminish since RS.
I agree with Annie that it is extremely important that the same audiologist and equipment perform your followup audiograms, if you want reliable results from which to draw conclusions about your state of hearing compared to that in the past. Level of expertise, techniques employed and the quality of the equipment used can all cause substantial variations in results.
Best wishes to all,
Tumbleweed
-
I have been reading this thread for a couple days and very interested too in what people have chosen to do after CK or GK.
It will be 2 years in August when I had GK. I had 65% speech discrimination and at my last appt, it was down to 20%. Although I have lost hearing I am happy to report that no growth has shown on the followup MRIs. My ENT suggested BiCross or BAHA. He said it will be up to me when the hearing (or lack of ) becomes bothersome. It certain situations I do miss hearing and try to position myself so my good ear is available. At times I think it bothers my family more than it bothers me. I have thought about this fall after my next folllow up appt to investigate the hearing devices.
Janet
-
It is encouraging to see that their has been retention of hearing for both GK and CK. Knowing this is helping me be more comfortable in weighing my options. I hope more people post here with postive outcomes--CK and GK. Thanks. nancy