ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: marg on August 20, 2007, 11:00:41 pm
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Hi all,
I saw my neurosurgeon for my 3 month (post-op) follow up last Wed. I told him about the constant tinitus in my AN ear and he said that the tinitus is because my hearing nerve (I now have no usable hearing left in that ear) is sending 'garbled messages to the brain'. He wants me to go the his partner (the ENT doctor who did my surgery with him) to talk about what he can do to stop the tinitus. It sounded to me like the ENT might want to remove the hearing nerve.
Do any of you who had your hearing nerve removed at the same time as your surgery still have tinitus.... or did it go away for you after surgery? I believe this forum is one of the best places to get correct information.... from those of you who have experienced it. I don't want to go through anything else if I don't have to.
I will still go see this ENT because I want to find out if he fits the Trans-ear and what other options he has to help me receive the sound from my deaf side. I Thanks,
Margaret
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HI
As far as I'm aware, and from reading about tinnitus when mine was really bad, it has nothing much to do with the hearing nerve, but is a 'noise' generated by the brain. It's not the damaged nerve itself that creates the impression of noise, but the brain is looking for sound, and not getting it through the useless or absent nerve, it generates it's own sound! Clever brains we have...
This might be a bit simplistic as an explanation of course. Better ask the experts. But, once the hearing nerve is removed the tinnitus can still be there, sadly. However there are ways to deal with it, so talk to a specialist.
Others here might have other experiences. I had CK, so the nerve is still there, useless and dormant.
Lorenzo
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Hi,
I have am two plus year post op (trans lab) and didn't have tinnitis before the surgery but have not had a quiet day since. I am told by many that stress is a factor. My eighth craniel nerve (the hearing nerve) was removed. I am told by my ENT, audiologist and neuro to "just not think about it and you won't hear it". They obviously don't have it! If you find a cure please let me know. Good luck.
Brendalu
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Thanks Brendalu and Lornezo,
I didn't think that just removing the hearing nerve would solve my problem and I am not willing to have more surgery to 'see if it works'. Thanks for the info. I am thinking about acupuncture.... has anyone tried this?
I would love to hear from others about the hearing nerve too. Did anyone have their tinitus stop after the hearing nerve was removed?
Thanks,
Margaret
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Hi Margaret: Nope, my tinnitus didn't stop with the death of my hearing nerve, in fact, I now have 3 seperate tinniti (?pleural for tinnitus?): the constant 'cars in the tunnel' sound, then there's the 'scraping' sound that comes & goes in the right ear; then there's the 'wooshing' pulsating sound that feels like it's dead center at the back of my head that also comes & goes. So, instead of 1 sound post op I now have 3!! (wish my $ would multiply like that)..... Nancy
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My tinnitus started in Nov 2004 at the same time my hearing started to go. I had translab surgery Sept 2006, so the hearing nerve was removed. My tinnitus changed quality post-op (sounded slightly different) but the volume didn't change. I don't expect it to ever go away. Most of the time I do okay ignoring it, but it's loud and clear in a silent environment.
I think tinnitus is generated from the brain, not the nerve (at least for most of us here)...
Katie
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Marg, I wouldn't put my money on getting a cure for tinnitus with surgery on the nerve. I had a buzz pre-op for about 4 or 5 years (same time period that my hearing was noticibly worsening). Post-op I have two tinnitus sounds - constant hissing, and a concurrent jingling like a jar of glass beeds that is generated by all sounds and utterances. T is always there when I check for it. I don't expect tinnitus to end. Such a thing would wonderful, though!
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Thank you all for the information..... I am not surprised ( I WAS hoping though ;) ). I will share this info. with my neurosurgeon when I see him in another 2 months. Just to let you know, I handed him a 2 page letter which had a lot of the information I shared 'in a place to vent' ....
Quote:
I actually had an ENT tell me when I went to go see him that... 'if I lost my hearing in my AN ear ... it would be no big deal and I'd adjust.' At the time I didn't know what to say (and of course I still had my hearing) so I thought he had talked to lots of people who had lost their hearing on the AN side and the other ear must have adjusted and it really wasn't much of a problem. HA !!! Well, I know better now and frankly that's not true. In the less than 3 months since I have had my surgery I have had too many people say things like - 'well, at least it isn't cancer' or tell me - ( and this is a direct quote) : " that's why God gave you 2 ears - so you would have a spare" . I now make it perfectly clear what it is like dealing minute by minute with the changes in my life.
#1 How tired I get trying to understand what people are saying .. in a crowded room or over music, TV, radio etc. because I only hear on one side
#2 The loud and varied tinnitus sounds I hear constantly ... which are worse now because I don't have any outside sounds on that side to compete with the sounds inside that deaf ear area.
#3 The balance issues .... which are better but still a problem.
#4 My facial paralysis ... which is getting somewhat better but still causes great difficulty -- I can't blink... washing my hair or face is a PAIN because I don't want to get soap in my eye, I can't rinse my mouth after brushing my teeth without 'leaking' out of the weak side, I hardly smile because it draws attention to my 1/2 way working face.
I also shared with him about self esteem and my trip to Hawaii. I felt he should know that even though we have to do something about these tumors (since as they grow we can have more and more problems ) most of our lives are changed and we are not the same as we were before treatment. ... Do you know anyone who has made it after treatment with NO issues (everthing is great ...can still hear perfectly, balance is fine, no tinitus and no facial paralysis). I don't. I have heard doctors say that 'those people' go on with their lives and don't want to think about this anymore... it's over. I guess there must be a few of the 'lucky ones'... but I think most have things to deal with .... like most of my friends here (and even the 2 AN people I know in the small town where I live).
Sorry, off on a side road,...... anyway,
I let him know it was a thank you letter (because he did a great job) and also included some information about what it was like after surgery to adjust to the issues I had to deal with . I gave him the letter to read later .... of course I didn't include the part where I said that the doctors should experience all our post-op symptoms for 3 months ( I thought that might be taken the wrong way and not go over so well ::) ).
I decided that after I had added to the vent topic about what doctors don't understand about our post-op life I could at least share (in a respectful and informative way ) what it is like with one of these Dr's. I do plan to discuss the information I shared with him when I see him next..... it should be interesting.
Thanks again for the support..... I think I will just continue with my plan to find out more about Trans ear in the near future.
Margaret
P.S. Hey, we could have a very interesting orchestra if only we could all put our tinitus sounds together and everyone could hear them.... ;D
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I have had tinnitus for over 40 years ...since around age 4 ... developed after a severe
concussion and never went away... since surgery it is actually worse...I used to could mask it
some with sound be it from a radio or TV or a white noise generator... now with no hearing
nerve on right side the ringing there is always present and I can no longer mask it ... only 7
weeks post op and adjusting ... but I figure I have had it this long and it isn't going anywhere
Don't mean to sound negative just truthful... as my surgeon and ENT told me ...tinnitus is not
sound but the brains interpretation of something it does not understand and converts to the
allusion of sound...
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Two Words, OH YES!!
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Hi Marg,
I'm Barbara and I'm new here. I had me AN OP (left ear) in april 06 in Hannover (13mm) in Germany. Before the op I could't walk any more; the AN also has completly tached the facial nerve ... After the op a had a facial paresis and I couldn't close me left eye, taste of metal in my tongue. First -even for the op- there was no Tinnitus at all. After the op I jumped a few month later in a stupid movement from a chair....crazy I was! ..and I have this time tinnitus. Since that time me hearing becomes bad. Anyway I have got meanwhile everthing ( infusions, relaxing therapy, injections, accupuntur.....). Until now nothing really helped for longer.Two weeks ago my husband discovered a special treatment for tinnitus ( injections) which should optimate the microcirculation in the ear and the tached area. When I got the first injection I was free of tinnitus for two hours. I tell you how the therapy will go one. Maybe it does work, but in this case of tinnitus doctors are absolutley not very informed.
Baba
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Hi Marg,
I have never heard anyone state that their tinnitus went away forever with any treatment. People get tinnitus just from loud noise. Damage to the hair cells in various invasive and non-invasive forms results in tinnitus. Tinnitus and hearing loss are almost always associated with these tumors regardless of size. My tinnitus stayed the same following surgery which involved removing the nerve along with the tumor. I no longer get the "bad signals". Mid-fossa is more difficult than the other approaches and requires more training. The hearing nerve is always spared but sometimes the blood supply is disrupted resulting in more hearing loss and/or tinnitus. However, you probably still have some sound localization ability which will alert you when others speak to you on that side. I wouldn't choose a second surgery with the hopes of relieving tinnitus. I would wait some time and let the healing take course. That's just me. Remember, the surgeons really have to work around the facial nerve during mid-fossa and it usually gets stretched. This nerve is more resiliant than the others but does involve your taste function too. Any post surgery temporary weekness will resolve over a short time. It's one of the downsides of this aproach but it is temporary. That's what I've read!
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Soundy love the picture!
Marg I was told if I had translab I would be trading one sound for an unknown sound.
M
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Today I have had a stopped up nose and ringing is even worse... I
was told before surgery that the ringing would more likely seem worse due
to lack of real sound going in ear and doctor was 110 % right on that
My daughter drew that of me before the AN was found and claims it
is what I looked like when feeling bad... when the AN was found a couple months
later it was eerie... but I love it now
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Soundy,
I am also a sufferer of pretty severe "T" It's always there, and alsways really loud, An hour of silenmce sure woule be nice but I doubt I'll ever get that again. Sorry, but I think that is the truth of the matter.
I am curious, your AN was 3mm when discovered in 2004 and grew to 3.5cm by 2007 when you had your surgery?? Seems like some pretty rapid growth. Did your docs have anything to say about this?
patti ut
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As far as I know there is no study that explains why tinnitus occurs and can "cure it". That does not surprise me. The pulsing sounds for example happen to all sorts of people and they do not have an An; the ringing can happen after all sorts of things; the hissing and all the rest of the sounds can also happen in a multitude of situations or post situations.
It's interesting how write ups about tinnitus have changed over the last five years for example.
It's good to see that tinnitus is being studied all over the world.
It's probably quite complicated..... as someone said a long time ago here, the area around an An is a very busy place: nerves, blood vessels; various complicated structures (inner ear for example); bio medical exchanges of fluids; cell membrane activity; hair cells; diet; meds; sound exposure; arteries; blood vessels; heck, maybe even muscle activity and sodium ions....
well it goes on and on.....
It is being researched and who knows...... those of us who are dealing with it daily might find a way that actually gets rid of it.
I Hope so.
W.
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I experience an elevated sound when I touch or have an itch on my back below the scapula. Can't figure out why the nerves there would give an increased sound in my AN side?
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I experience an elevated sound when I touch or have an itch on my back below the scapula. Can't figure out why the nerves there would give an increased sound in my AN side?
Odd, isn't it. Any time I have an involuntary muscle twitch, I get a burst in my tinnitus, too. I've just chalked it up to the inter-connectedness of the whole nervous system.
Let me know if you get a better answer than that! :)
Katie
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It hit accelerated growth from October 2006 and April 2007... I was not even suppose to go back til this
October for new MRI... I was enjoying watch and wait stautus... my hearing started changing weekly
and I got more wobbly and made an appointment and there it was from a tiny thing to a monster...
looking at scans side by side it looked huge even though when I look at a ruler 3 cm looks small
Anyway... no one is positive why it took off growing... most think hormones may have played into it ...
I started having 2 periods a month lasting ten days with a week if I was lucky between...I got to the point
that I was losing more blood than my body could replace...I ended up with a hysterectomy in March since
the iron I was taking wasn't boosting it enough and the hormone pills they tried to balance things out with
were messing with my liver...I knew things were different but was not really ready for just how different...they
gave me a few months to get things in order and look into radiation but the radiation oncologist didn't feel
good about zapping it because of lupus...
So short answer is they don't know ... but suspect hormone involvement
And to beat all the rheumatologist has issued a letter saying I may not have lupus but MCTD (cousin of lupus ) so
now find that radiation may have been an option after all...
But over all doing well... have a post op tomorrow... aside from headaches when I bend over ,sneeze ,cough
etc and the twitchy eye and taste problems I am doing great...
Have found something funny that I didn't realize til my 8 year old started laughing at me...when I yawn the eye
on the AN side closes... it doesn't just close but squeezes tightly shut
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My Neurosurgeon told me firmly in our post-surgery meeting that the noises that constitute tinitus were not real sounds at all, but were instead the Brains attempt to translate signals sent to it via a damaged receptor (hearing nerve)!
He said that as far as he knows, there is not a single report of an individuals tinitus going away after surgery.
Moreover, he said that changes in the volume or tone of the noises were not related to any growth or change in AN tumors.
The type of noise that you might be used to can (without cause) change many trimes during a lifetime.
He has had patients describe anything from a low bell tone to a high ring.
All without any verifiable proof of a link to removal, growth or change in the individual tumor!
So, good luck.
Personally,
I hope mine stays it's cute little, un-rattling white noise it has pretty much always been!!
MYKEY :o