Intra Cochlear Acoustic Neuroma

[kzepol]

I have been reading posts on this site for a couple of weeks since, 5 years after complete hearing loss in right ear accompanied by very loud, 24/7 roaring tinnits, I was dx with "Intra Cochlear AN." After questioning him about why I would need a CT scan, my Kaiser Dr. (I'm in San Diego County) told me everything I have been reading on this site and other info does not apply to my AN because mine is Intra Cochlear. He is talking about surgery, an outpatient procedure, through the ear canal.  The tumor is 7mm and I believe my symptoms started at least 6 years ago.  I had the VNG (balance study with hot and cold air - calorics (?) ) and there was a response indicating my balance system has not been affected and I have not experienced balance problems. Dr. says there is a risk of balance problems after the surgery but, and I need to meet with him to further understand this, sounds like that could resolve within a few weeks.
I have seen Dr. House at House Ear Clinic in Orange, CA and I'm having my MRI sent to him and will see him again for his opinion about tx of this "real rare (?)" type of tumor.
Lastly, I sure don't like all the waiting between appointments and my stress level is very high as I continue to work full time in a profession that is very demanding of my ability to focus and interact professionally although I am never sure if what I heard is accurate, how much I do not even realize what I have not heard ... I know many of you can relate. Thanks for reading this and I look forward to your responses and suggestions.

[rupert]

 kzepol,
            Stress,   trouble focusing and adjusting to effects of an AN  are something many people on this sight can really relate too.   I'm  sorry to hear
that you have to join the club.   I have never heard of an intra cochlear AN,   but there might be others on here that have.   Usually AN's grow off of the shwann
cells that cover the balance nerve.  Usually a the point where the nerve bundle enters the bone structure of the inner ear.  There are tumors that grow off other nerves.  The AN then grows into the inner ear canal outward  into the space between the inner ear and the brain.   It might be that yours has grown in the opposite direction toward the cochlea, or perhaps has grown further down the nerve near the cochlea.   Or it could be something totall different .   I think your doing the right thing by getting several opinions.  I am not a doctor, but this removal does not sound like an outpatient procedure.   Keep doing your research and don't be afraid to
get more opinions from several neurosurgeons.  Good luck to you .    Bryan

[leapyrtwins]

I'm with Bryan, this doesn't sound like an outpatient procedure.

Sending your MRI to House was an excellent idea.  Please keep us posted on what they have to say.

Jan

[kzepol]

Thanks Bryan & Jan for responding to my questions and venting about the stress of all this. So much to interpret and digest! I hope others can give insight re "intra cochlear AN" as I am still not finding info anywhere online. Hope to see doctor this week. Anyone out there in san Diego County?

[TJ]

kzepol

I haven't heard of an intra cochlear AN either.  They found mine and it was touching the cochlear but it was not inside.  Since it was touching they had to lower the radiation dose and increase the number of treatments  to try and save the hearing.  It is good you are getting other opinions. 

Best of luck

TJ

[Jim Scott]

Hi, kzepol ~

I'm sorry I overlooked your initial posting but wanted to (a) welcome you to the ANA discussion forums and, (b) add my comments. 

The medical name for AN is "vestibular schwannoma", meaning a shwannoma of the vestibular nerve. The vestibular nerve starts at the cochlea and goes to the brain from there.  Shwann cells are the cells that cover the nerves and when they grow out of control, that is called a shwannoma.

It's apparent that your tumor is a schwannoma, and probably also vestibular, that happens to grow further inside the ear (closer to the cochlear) than is typical.  Beyond that, I'll leave the medical opinions to the doctors and simply express my hope that all of your questions are soon answered and your AN is resolved in a satisfactory manner. 

Jim

[rupert]

  I am finding some information.   An intra cochlear AN  is a AN that has grown closer to the cochlear than normally seen and is rare.   The treatment  options,   seem

to be the same as other AN's.   I know this is not a lot of new information,  but the only thing I can find.   It does seem that House has experience with these

so getting an opinion from them is on the  right track.

[Gordon Duncan]

I just read a previous post of someone that has and Intra Cochlear Acoustic Neuroma.  I too, was diagnosed with this about a year ago.  My tinnitus has gotten extremely loud the last 3 weeks.  I too have a job that I am constantly on the phone and it is a challenge now to be in crowds of people.  I am taking it one day at a time, but I am wondering if I should be re-visiting the MRI I had and maybe get another? If anyone knows of any changes of the possibility of surgery for my "special" AN, I would love to hear about it?

I have been told that the tinnitus could get even WORSE if the AN is removed, which I cannot imagine....

[Martha G]

I have an intralabyrinthine schwannoma which I think is the same as a cochlear neuroma. Can anyone clarify this? I have been told mine is rare. I was diagnosed 5 years ago at 4.6mm now I am at 8.7. I have severe bouts of vertigo and am deaf in that ear. I have consulted with Dr. Slattery at the House Ear Clinic as well as a doc up at UCSF. I will be going to Stanford next week for another opinion. I'm trying to find anyone who has had this type of tumor remove and what the recovery was like. I have been told it is unpleasant with a long recovery period.

[vkhsw]

Hi, Martha,

I would be very curious to hear about your visit to Stanford. Seems not a lot of Bay Area folks are here or simply not going to Stanford? Rave reviews of House clinics though. 

Mine is also mostly growing into inner ear and towards cochlea, although no one has called it anything other than vestibular schwannoma, and yes, this is atypical...  My hearing on this side has slowly deteriorated, last visit word recognition dropped to 50-ish range, from 80-ish a year prior.

I have been seeing Dr. Blevins for the last couple of years of wait and watch, but last  month the conversation progressed to surgery due to some growth. 

From what I have read and was told by Dr. Blevins, I should expect a complete loss of hearing post surgery. He and I have not discussed the approach options, but on my own, I am attracted to the idea of middle fossa surgery, with perhaps an unrealistic hope that my result will be "special" and whatever is there now will remain...  I am also reading about cochlear implants, it seems that recently there are more done for AN patients than ever before, even though the "nerve is damaged, it won't help" paradigm is still prevailing.

Thanks for anything you are willing to share about Stanford, UCSF, etc - and the options you were given. 

[feline]

I had my AN removed by Dr Blevins and Dr Chang about 14 months ago everyone was very very nice at stanford I don't believe my dry eye and facial paralysis and hearing loss has nothing to do with the surgeons. The surgery site healed well and I had zero complications unfortunately  the AN does some damage on its own. But , Stanford staff was great.
Feline