Retro-Sigmoid & Hearing Loss/Headaches

[sharonov]

On this incredibly arduous journey toward decision making, wherein I begin many topics on this board that perhaps could be combined (but I want lots and lots of input!) I have come across a phenomenum which I know somebody can explain. 

If and when I have microsurgery, I know I'll be having retro-sigmoid so that my Trigeminal Neuralgia can be taken care of at the same time.  As everyone knows, this approach runs second in percentage of hearing preservation, at 40%.  The endoscopy that I had originally decided upon, according to two abstracts I subsequently dug up, has a 12% chance of success.  Each, for my size tumor, has a 99% chance of saving the facial nerve.  I didn't see any statistics on balance.

The interesting thing was that both articles said that tumor size had no bearing on hearing preservation, while it did when it came to saving the facial nerve.  Does anyone know why?  I'm supposing that it's because the tumor is right there on the hearing nerve while it's only parallel to the facial nerve, but in that case, why wouldn't the doctors always just debulk a non-growing or super slow growing tumor?  Or IS the tumor always on the hearing nerve?  Or is this a question that should be answered by an MD?   
Sharon 

[another NY postie]

I could be wrong on this since I literally discovered what an acoustic neuroma was about one month ago, but I am pretty sure, with the hearing, a lot has to do with where tumor is located on vestibular.  And when the tumor presses on the hearing nerve, and cuts off the blood flow, then that portion dies and the hearing nerve does not regenerate, hence the hearing loss.  Plus, I think they might have to cut the hearing nerve depending on tumor location.  I know at least for me, it has been a big issue in how much if any hearing might be preserved if I choose surgery because mine happens to be small but right near cochlear.  So, my chances are less for hearing preservation than someone who might have a bigger tumor in IAC but not so deep in. 

Sharon, you also mentioned that Shahinian said you had a class 2 tumor. What exactly does he mean by that because he used it in relation to hearing preservation, right?

(Please anyone correct me if this is wrong in terms of tumor location and hearing as it is what I am understanding through consultation and reading but I am still not 100% on any of this!

[sharonov]

Shahinian called it a class two because of size.  Yours would definitely be a class one, and if you haven't lost significant hearing in the affected ear you'd probably have a better chance of retaining some or most of what you have left.

I know how you feel about radiation, but have you gone through the results of the mailing that the Acoustic Neuroma Organization sent out a couple of years ago?  Granted, many of the respondees had their surgery many years ago, but the results of those who had microsurgery compared with those who had radiation are really astounding.  I wish radiation were an option for me.
Sharon

[another NY postie]

Sharon,
I just finished reading a paper that Dr. Brackmann had sent me.  It is referring to middle fasa surgery, but the bottom line was that tumor size did not determine hearing preservation rates but whether the tumor is located on the inferior or superior portion of the vestibular nerve did impact the stats. Inferior portion is closer to the cochlear and resulted in lower hearing preservation rates.  I do not know where my tumor is located but he did ask me to get the ENG to help determine this.  Do you have any idea where yours is? 

(In terms of me and radiation, I think I also risk hearing loss/facial stuff with that since mine is so deep in lateral portion of canal, so I risk radiating surrounding stuff that is all squished up together but I will ask that - I have an appt with Golfinos who does both Gamma and surgery...I need to get the AN packet - I have not ordered that yet)

[sharonov]

I read another long article by a Chicago doctor with everything you'd want to know about acoustic neuromas, and his bottom line was that with microsurgery of any kind, if you don't lose the hearing right away it will decline to nothingness in time anyway.  Cheerful news.

So, with conventional retro-sigmoid I have a slightly better chance of saving some of my (already poor, yet serviceable) hearing, with the probability that it will soon begin to decline into SSD-ness.  I will also have a chance of developing headaches to replace the Trigeminal Neuralgia I now have.

With endoscopy the odds are much greater that I'll lose the hearing tout-suite but most probably will not get headaches since the brain is not being retracted.

Oy Vay.

At least I had wonderful fireworks--outside my window on the 3rd and at a suburban park last night.  Forgot about my tumor for a few hours.
Sharon

[FlyersFan68]

I'm not so sure that reatraction is the cause for headaches. My experience led me towards believing that proper bone dust removal and having a cranioplasty reduces this problem. Cranioplasty is a closing procedure where the original bone is put back in place. Titanium mesh is the other option which "may" be to blame for some lingering headaches for some people. Of course I've witnessed things from all sides of the spectrum so I'm not 100% sure either way. However, I would definitely ask about the cranioplasty and proper bone dust removal if you are already headache prone. 

[Lilan]

Was that Dr. Hain's article? I was going to look that up for you so I'm glad you found it.    Only because, I think it's important to be realistic in terms of hope about hearing preservation. Hearing just seems so delicate that it's very easily damaged or lost, and I think any AN or similar type of patient needs to be prepared for that -- and be joyous if it goes otherwise, but very prepared for one-sided hearing loss to happen soon or in the medium-term.

[sharonov]

Yep--it was Dr. Hain's article.  And here I am in Chicago. 
Sharon

[leapyrtwins]

Who is Dr. Hain?  And what are his credentials?

Just curious, as I haven't heard of him before.

Jan

[Lilan]

Dr. Hain, aka the Dizzy Doctor, is an MD whose practice is Chicago Dizziness and Hearing, which is affiliated with Northwestern, and shares space with Chicago Ear Institute and Dr. Wiet at the Chi office on N. Michigan.

He's renowned for treatment of all kinds of dizziness and has written a lot of explanatory material about acoustic neuromas also.

He is actually the first doctor I made an appointment with on my journey, since dizziness was my presenting symptom. He's very nice and though he is an MD, my impression of him was that he has just as much of a research bent as anything.

From his Web site: Chicago Dizziness and Hearing is the clinical practice of Timothy C. Hain, M.D., and Marcello Cherchi, Ph.D., M.D. We are "otoneurologists", specializing in diagnosis and treatment of dizziness and hearing disorders. Our goal is to offer compassionate and expert health care.

Dr. Hain: Professor of Neurology, Otolaryngology, and Physical Therapy/Human Movement Science, Northwestern University Medical School, Chicago IL, USA. On staff at Northwestern Memorial Hospital. Education: MD and Neurology Residency: University of Illinois, Chicago IL. Fellowship: Johns Hopkins University (Neurophysiology and Neuro-ophthalmology). Board certified in Neurology (1981).

ETA: link to acoustic neuroma overview: http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

[leapyrtwins]

Thanks for the info, Lilan.

I've never been to Chicago Ear's office on N. Michigan, just the one in Hinsdale and the one in Elk Grove Village (basically Dr. Battista's office - I think).

Very interesting information.  I actually talked to a local patient just this evening who was recently diagnosed with an AN and her biggest symptom is dizziness.  I'll have to pass this information along to her.

Jan

[mll]

Hi Sharon.  I read your posts and wanted to see how you are doing.  Have you decided on surgery?  I also have trigeminal neuralgia and will be having the retro-sigmoid on Wednesday.  I was also wondering about headaches with this approach so thank you for posting.  I'm going to discuss the cranioplasty and bone dust removal with my neurosurgeon at my pre-opt.--better late than never!

mll

[leapyrtwins]

mll -

the AN calendar says that Sharon had endoscopic surgery @ SBI on October 14th.

I'm not sure if she's reported back after her procedure or not; been off the forum for a few days myself due to work obligations.

Sharon -

hope all is well    Please give us an update.

Best,

Jan

[sharonov]

Thanks for thinking of me, Jan.  I am back in Watch & Wait mode since my trigeminal neuralgia miraculously receded into treatable territory (2 pills a day.)  My neurosurgeon, Dr. Chandler, changed his mind based on that fact and decided the two (AN & TN) were not related after all.  That was confirmed by Dr. Jho, since I also sent my MRI to him.  I'm hoping I can just toddle along indefinitely, or maybe until some new treatment comes along--maybe one that can restore the huge amount of hearing I've lost!  Lol!  Fat chance, huh?  Maybe tighten up my wrinkles while they're at it. 
Sharon

[leapyrtwins]

Sharon -

thanks for the update.  I thought that by now you'd be posting about your surgical experience - glad to hear you haven't had a need for it yet.

Jan