ANA Discussion Forum
Archive => Archives => Topic started by: Captain Deb on April 05, 2006, 02:24:24 pm
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When I had my surgery at HEI in 03, they gave me a 70% change at retaining useful hearing post-op--no such luck for me! The docs said the nerve was left intact. I think the numbers the docs throw out there are pretty unrealistic for microsurgical hearing preservation. Would like to know how many out there were able to retain useful hearing following mid-fossa or retrosigmoid or any other approach and how many lost their hearing. This does not include trans-lab--which definitely sacrifices the hearing.
Just curious!
Capt Deb
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Great question
My hearing was perfect prior to AN surgery, so my surgeon opted for the middle fossa approach. They ended up sacraficing the hearing nerve to try and preserve the facial nerve, which was severly splayed by the tumor.
matti
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I had middle fossa at House in Nov of 05. My hearing was preserved. I am very fortunate.
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I had retro and had very minimal hearing before surgery due to being misdiagnosed the 6 mos before. I have nothing left in my left ear. I had some right after surgery but it's diminished since. They basically told me not to expect any remaining hearing due to my tumor size and the concern was on facial preservation...
Oh boy guess I better up date this eh? I have a very miniscule amount of left sided hearing that just came back at 8 mos post op. It's enough to take away that wonky headed noisy room can't find location of sound problem but not enough to talk on the phone in a room with any type of noise :o)
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Dear Cptn.Deb
Stats given are merely indicators of potentials. There are no guarantees with any Tx type, to include radiation.
Drs have found patients to demand statistics so they are given.
I'm sorry to read your outcome and the other reported adverse outcomes.
One might say, however, the AN is gone which would not be the case if irradiation were first line Tx choice. Mid Fossa and FSR hearing outcome stats are very comparable.
Russ
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sorry I am new here
could you please explain me, if tumor is on the left side,(1.0 x1.5 x 1.1) so, after operation you might lose hearing in one left ear or in both?
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Kill Bill it depends on your choice of treatment and how much hearing you currently have in your ear. Translab you will definitely not have any remaining hearing as they remove the hearing nerve, bones etc...mid fossa retro you could have hearing left it depends on the skill of your surgeon, how much hearing you had priort to surgery and how much nerve damage is done from the tumor.
Have you had any audiograms done to determine your hearing status now? Do you have tinnitus?
If my comment is off the mark someone let me know!
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actually my brother 13 y.o (03.31) vas diagnosed by MR -AN ...
I am verry upset, doctors said that surgery is very dangerous. Size of his tumour 1.0 x 1.5 x 1.1 cm
I know just very little about this tumour, just collecting information...
one doctor offered monitoring... then neurosurgeon offered surgery, tomorrow we will go to another neurosurgeon for another consultation...
my brothers symptoms were about in january he had reduced hearing in his left ear, and a bit tinnitus, and after about a month those symptoms gone, but doctors first made audiogram, then CT, after that MR and confirmed that it is vestibular schwanoma ....
I just dont understand whats the reason of that tumour... why it appears??? :-\
sorry for my english mistakes, I am not from USA
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Kill Bill where are you from?
My son had a friend in school this year who had surgery for an acoustic neuroma. I'm not sure of the particulars as she has surgery about the same time I did but know through him she is having problems.
Any surgery is dangerous and depending where, or what the tumor if involving it hightens the risk. Is radiosurgery a better possibility? Have they mentioned gamma or cyber knife as a possible treatment option?
I don't think anyone knows the why it appears unfortunately it does. I'm sure my tumor was there when I was younger it just was such mild symptoms and intermittent symptoms that I didn't pay attention to them. It didn't become a problem for me until I was losing my hearing, had tinnitus and was walking into walls.
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I dont understant if he will be able to go to school after surgery? able to smile, to do his usual writing,cycling, runing or swiming?
Does that mean that his life is broken??? ???
no doctors didn mentioned the radiosurgery. Just my mom is getting crazy these days because of this diagnosis :-\
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NO his life is not broken, just different.
First off tell your mom to settle down which I know has to be hard.
Second how old are you?
Third, in all honesty an's affect everyone differently. Speaking for myself...I have difficulty writing as I leave out letters in words. My tumor was on my left side and I write with my right. It is possible to retrain either hand. I can not run but then again I'm also 41 not 13. I couldn't run that good before my surgery ;D I don't see why swimming would be a problem but I don't know your brothers total history. I do know that I would make sure he has a swimming buddy to help watch out for him which is safe regardless of AN or not. There are those on here who I'm sure have ridden a bicycle or motorcycle since their diagnosis and treatment. I am not one of them and do not feel right now I'd be very successful but then again it is not something I did before surgery either. I have bad knees so bicycles are out!
A girl at my son's school had an acoustic neuroma and she is about 16. My son said she is doing well back at school but does have problems with her short term memory since her sugery a a few months ago. She is walking better than I am and seems to have bounced back since her surgery last november.
Big hugs to your family!{{{{{{{{{{{{HUGS}}}}}}}}}}}}} I know this is definitely a trying time for everyone!
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I am 27 ::)
and for example afer surgery afer some time will he became again the same as he is now- looks totaly healthy or any symptoms will last all his life?
thank you for hugs ;)
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I myself had retrosigmoid surgery and I look normal. I did not have facial paralysis but facial numbness so everything works ok I just don't feel it. My scar is covered by my hair.
My son said the girl at school looks just like she did before surgery other than she's a little unbalanced when she walks but will improve over time she was just a few weeks post op.
Depending on what happens during surgery he might have some life long symptoms like balance problems but...he's young and should compensate. I'm not going to pat you on the head and say everything will be a piece of cake because I'd be lying because I don't know. Eveyone has different problems, outcomes with no rhyme or reason to size of tumor or left or right side of tumor.
I know your poor mom must be beside herself with worry. I know mine was and I'm an adult. I know if it was my son I'd be a basekt case!
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Kill Bill,
No your brother's life is definitely NOT broken! I am 53, had about the same size tumor, and I run 3 miles on a treadmill, swim, work and have a pretty normal life except I have no hearing in my AN side ear which is annoying, but not a big deal, really. A guy I was in the hospital with just ran his third marathon and his tumor was considerably larger than mine. A lot of the outcome is based on where you are able to get treatment. Where are you located?
Please reassure your mother that this disease is not necessarily disabling and that a great deal of us lead productive healthy lives post-treatment.
Capt Deb
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Deb to answer one of your questions Kill Bil's brother in in lithuania...
makes you want to just go hug the little guy!
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thank you Captain Deb and battyprincess for your concern :-*
yesterday we went to another one neurosurgeon. he arranged meeting with the best surgeons in the best clinik. But just because country is not big, this kind of tumour is not so often dsiagnosed as in US. they said they had only one girl 17 y.o. during last year, but about 30 adults per year. They said, that the problem is that his hearing will become worse in left ear after operation, an at this size of tumour, they will protect his facial nerves. So me and mom for now became steady more ::)
they said that operation can wait while he will finish his school semester this end of june, because its very slow growing tumour.
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Yes typically it is a slow growing tumor so waiting until the semester ends shouldn't be a problem. His hearing will become worse in his left ear if you don't treat the tumor too. What type of surgery did they suggest? with Middle Fossa or Retro there is a chance that hearing can be perserved but I think in all cases saving the facial nerve is the most important thing.
Hug your mom for us and telling will sending good thoughts your way!
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Anyway, back to the subject--still wanting to hear from anyone who actually ended up with any hearing at all after surgery.
Capt Deb
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you know I think if the tinnitus would dimish I'd have more hearing! It's so loud it blocks stuff out ;)
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Hi Deb,
Middle Fossa was the approach and I only lost 10% of my hearing. I was told that my tumor was on top of the 3 nerves and was easy to remove. I feel truly Blessed! Ann
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Jeez, I'd say so! Something to be said for surgery on a small tumor! You are really fortunate indeed.
Capt Deb
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I did not have any additional hearing loss after my retrosigmoid surgery. I had 75% hearing on my AN side and still have 75% hearing after surgery. The doctor said I had a 50% chance of loosing my hearing as a result of the surgery. I have constant and fairly loud tinnitus both before and after surgery. My balance nerve was sacrificed. The tumor was "sticky around my facial nerve", but I did not experience any facial paralysis. Headaches were the main problem before and after surgery. They increased in frequency and severity after surgery.
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I had middle fossa surgery for a small tumor (6mm). My hearing was 100% when I was first diagnosed, my symptoms being fullness in the ear and balance and dizziness problems. After 1 year, my hearing had diminished to 85%, which made me decide to have the surgery. My first hearing test after surgery was 2 months later and my hearing was at 76%. Six months after that it has held steady at 76%. Hearing in my "good" ear is still 100%. I was very fortunate.
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I was talking with Majid Sammi (he of 3,000 AN OPs, Hannover Institue)
He explained how delicate the hearing nerve was
"hearing is OK, everything is fine
then you touch the wrong place
-and its gone - just like that"
I would add that the size/location is also significant
Best regards
Tony
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Just had my hearing tested on Monday. My audiologist wouldn't give me a percentage like I've seen on this site. She just said that most AN patients test in the "Profound Hearing Loss" area and I tested in the "Severe Hearing Loss" area. Shoot, I was wanting to throw around those percentages too! Had no speech recognition on the AN side.
Sue in vANcouver.
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Still very early, but appears hearing was spared at almost pre-operative levels--which is pretty good--word recognition, no high frequency hearing. I understand that you need to be about 3 months post-surgery for the information to be very reliable. I also understand that the smaller the tumor and the less hearing loss to begin with, the greater your chances of preserving hearing (mine was 16 mm x8mm x 8mm). I was also told often to expect to lose meaningful hearing and am glad for that advice as it does seem more common than not. I will post again after 3 month mark.
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This is possibly going to sound silly but..I can understand how surgery can result in loss of hearing. If I had 50% hearing before radiation and now nothing, is that because the AN works it's way into the ear canal and damages nerves etc?
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Chris,
Not a silly question at all.
Prior to either treatment choice whatever damage the AN has done to the auditory nerve through compression of the hair like fibers which transmit sound is generally irreversible.
Loss of hearing through surgery, to your point, is fairly understandable. Sharp instruments around cranial nerves the size of a thread can have that effect. Unless the AN is very small , generally 1 cm or less, I have not seen studies that have shown a high percentage of retained usable hearing with surgery. The larger the tumor the lower the %
Loss of hearing with radiosurgery is less common, but definitiely can occur. The facial and hearing nerve are generally both involved in the tumor and will receive some of the radiation dose. while the healthy DNA of the nerves should recover better than the abnormal DNA of the tumor, they can still be impacted permanently. One dose treatments such as GK are ususally around 60-70% hearing preservation based on recent studies I've seen. FSR protocols such as with CK where staged treatment spreads the dose generally track slightly higher. those who don't maintain the pre-treatment levels may have some additional DB range loss, but only a very small percentage lose all their hearing
Mark
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15918941&itool=iconabstr&query_hl=21
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Thanks Mark, you always seem to be a good source of information and I love to see ideas backed up by statistics not just scare factor. Can't wait to see how things progress with me. If I have lost my hearing for good, so be it. I would love to get rid of the tinnitus though, which I was told would be in the 30% mark.