SKull Base Possibility

[ixta]

I'm driving now @ 26 and able to handle holiday shopping.
Most acute prob now probably unilateral hearing.

If the vestibular nerve is taken out-no hearing aiid-nor coclear implant would work correct? since the wire hass been cut that transmits sounds to my brain.

What about these bone/brain stem implants I am hearing about? Anyone have those?
The mic on the deaf side transmitting sound to the good side would drive me nuts so not interested in that unless I have a mic and speaker in my ear for driving in the passenger side in order to hear what the driver is saying on my deaf left side.

:::Implantable Hearing Aids for Profound Sensorineural Hearing Loss/ Deafness from Neural Damage

People affected by Neurofibromatosis II (NF2), also called Von Recklinghausen's Disease, develop tumors (vestibular schwannomas) on both auditory nerves. Their removal often results in total deafness in both ears. Hearing aids and cochlear implants are ineffective for NF2 patients. Auditory Brainstem Implants (ABIs) are specifically designed for neural deafness, and they received FDA approval in 2000. ABIs involve the placement of a multichannel electrode over the cochlear nucleus area after tumor removal. An external speech processor is individually programmed and provides electrical stimulation that allows perception of sound. Implantation may be performed during the removal of an acoustic tumor or in a separate procedure. ABIs provide limited speech perception.:::

This "Speech perception" to me still sounds like the peanuts teacher...Anyone have this type of Bionic Woman ear thingy?

I got another 2 weeks or so of antivert and was told by shahinian to take all of the intra cranial hypertension meds, Got two left.
Cipro was finished 2 days ago.
Start work in another week.
Perhaps I should ease in slow-like 4 days a week.

[Jeff]

What about these bone/brain stem implants I am hearing about? Anyone have those?

Hello,
I have an ABI but mine did not work for me. The device itself works, but the electrodes that were placed on my brainstem moved after the surgery. Thus, the wrong portion of my brain was stimulated when it was switched on. This caused some interesting and scary side-effects.

My brother got an ABI in February and it works well for him. Using a combination of lip-reading and hearing from the ABI, he understood 96% of what said during his testing. This drops significantly when lip-reading is not employed.

Currently in the US, the ABI is only allowed for NF2 patients. However, I believe that doctors in Italy have implanted no-NF2 patients with success.

I hope that this helps.

Jeff

[ixta]

JEff, thanks for your input, WHOOOAAaa, that does sound scary, did it produce vivid nightmares or something?
I understand about the lip reading too, it sounds like the implant conducts something that "sounds like sound" I guess.
I studied about that NF2. Is NF2 ALWAYS Bilateral if ANs are involved, or does every one that has an AN considered NF2>?
I understand that it is genetic and google imagesof NEUROFIBROMATOSIS type 2 comes up with a some frightful images,
it seems that tumors can start in the spine also with NF2.  I am quite ignorant about NF2, but came across it and it shocked me a bit, so i tried to rule myself out really quick.

"Background: Central neurofibromatosis or neurofibromatosis type 2 (NF2) is a multisystem genetic disorder associated with bilateral vestibular schwannomas, spinal cord schwannomas, meningiomas, gliomas, and juvenile cataracts with a paucity of cutaneous features, which are seen more consistently in neurofibromatosis type 1 (NF1). Although quite variable in its age of onset and severity of symptoms in affected individuals, NF2 is associated with significant morbidity and decreased life span. Furthermore, diagnosis in childhood is often difficult because of the absence of central nervous system involvement at a young age."

per www.emedicine.com/NEURO/topic496.htm

[chopper]

I got another 2 weeks or so of antivert and was told by shahinian to take all of the intra cranial hypertension meds, Got two left.
Cipro was finished 2 days ago.
Start work in another week.
Perhaps I should ease in slow-like 4 days a week.

Jeeze, all I got was a lot of vicodan. 

[ixta]

I got another 2 weeks or so of antivert and was told by shahinian to take all of the intra cranial hypertension meds, Got two left.
Cipro was finished 2 days ago.
Start work in another week.
Perhaps I should ease in slow-like 4 days a week.

Jeeze, all I got was a lot of vicodan. 

ya chop, I think it is because my vertigo was so bad post op, They were always talking about IN on Mon out on Wed, but they extended my stay one day to manage vertigo,
the PT, after a bed to chair transfer +  puking, he told the nurse, "no way" threw up his hands and said he'd be back tomorrow to walk me outside the room with a walker. Next morning I was up and about on the walker in slow motion.

they wheeled me out of the hosp in a wheel chair-that made vert worse, since my eye tracking was all wacky.
So he gave me tons of antivert and massive pain med acetominophen large dosis that I only took 1x one week post op due to a headache in the morning.

I have lowered my incline sleeping o about 20 degrees instead of te 45 and it feels MUCHO MEJOR!
I'm sleeping in a couch still with legs raise, pillows under knees, back pain has gone away!

Lots of snow too, two feet!
I threw my cat in the snow just to see him kerplunk like a rock in the quicksand. haha.

[Jeff]

JEff, thanks for your input, WHOOOAAaa, that does sound scary, did it produce vivid nightmares or something?
I understand about the lip reading too, it sounds like the implant conducts something that "sounds like sound" I guess.
I studied about that NF2. Is NF2 ALWAYS Bilateral if ANs are involved, or does every one that has an AN considered NF2>?
I understand that it is genetic and google imagesof NEUROFIBROMATOSIS type 2 comes up with a some frightful images,
it seems that tumors can start in the spine also with NF2.  I am quite ignorant about NF2, but came across it and it shocked me a bit, so i tried to rule myself out really quick.

Hi,
The sensations that I received were not auditory as I had hoped for. The ABI (Auditory Brainstem Implant) has 22 electrodes. When the device is tested for the first time, each electrode is stimulated individually. Some of the electrodes, when stimulated made m eyes go out of focus and also made them feel like they were going to pop out of my head. Others made something in my abdomen contract. And, the most scary to me, others paralyzed my throat. I couldn't say anything when they were stimulated. So....I don't use it. I will get another when I have my other AN removed and hope that I get  better result.
 I think that it is highly unlikely that you would have NF2. It's pretty rare. Here are the diagnostic criteria:


Have a great day,

Jeff

[ixta]

Jeff, thanks for your explanation of NF2.
I was quite ignorant when I got my AN Diagnosed, and I ran across some NF2 information that made me want to rule that out.
I appreciate your response.

I head back to work tomorrow for the first time after surgery. I am going to work only 4 days a week for a month. Will see, I did ok at a new years party but the noise and sound was overwhelming in one ear, I got kinda dizzy at 1 am and it was not due to beer *)

[noriders]

Who was your endo at UCLA? Have been to SBI and would like to continue reseach.

[ixta]

Hi, I never "had an Endo at UCLA", but I talked to the head guy there for free, and he was a great guy. His nurse staff is nice too and can take information down and give to him. He called me back the next day.

He is familiar with Endo resections of ANs but does not formally do them I believe.
Shahinian does like a couple every month.

I aksed him about Skullbase, and he said, "I am familiar with them".

Surgeons are pretty tight lipped about saying anything about others work.
If you research endo, and its political, economic, cultural  impact on traditional surgery
- one will understand why.

John is a Dr. that is not afraid of change and is open to learning things that enhance the medical profession, research, and patient quality of care.

John G. Frazee, M.D.
Director, UCLA Neuroendoscopy Program
UCLA Medical Center
Division of Neurosurgery
Box 957039
Los Angeles, CA 90095-7039
Phone: (310) 206-1231
Fax: (310) 267-2208

http://neurosurgery.ucla.edu/Programs/NeuroEndoscopy/NE_Patient.html

Go to the AN link on the bottom there, it lists just traditional techniques.
I am sure in the future, he will be doing endo ANs,
I just wouldn't want residents picking my cerebellum off the floor or to be a patient to "learn on"-
Thats why I chose Shahinian. He has his own Team that he only allows to work with him.
Dr. Jho does endo too.

Shahinian is a wizard and takes immediate control when you go under the knife shouting orders to monitor the facial nerve, vitals etc, (even though I was not there) too bad I couldnt get a wider angle of the whole operating room and do a webcast of the operation for you guys. LOL

[noriders]

Ixta,

Are you out there?

How are you doing???

Alll the best

Pat

[ixta]

I DIED!

Well that wasn't too funny to post in a tumor forum.

No, im doing ok, Ive just been flooded with work. I work as a child adult/family therapist and it can get overwhelming at times.
I did a PT consult yesterday and they had me walk a tape line on the floor toe to toe. I felt like I was walking a tight rope and was going to fall into the sea!

I am at the "transear" investigation stage, but am getting to full recovery stage before following through with that investigation.
I'm still "hear"! WOOT WOOT!

[ixta]

Ok, I am starting to get some Premera BOE benefit explanations and I need some help with those that are familiar with this scary insurance stuff.
I almost posted in the insurance thread area, but want it related to my experience at SBI.

At the getgo, when I discovered ENDO, I wanted my insurance to cover it. They got Shahinian to be as if a PPO through what they call a "benefit level exception" I have Blue Cross Premera Heritage Plus 1 (I think)

But they said, I would have some "residual charges"

I have recieved a bill from an Anestesiologist whom says worked on me, although I never remember meeting him.
I met one, but it wasnt the billed one. I owe him about 250 alledgedly.

here are the links to the EOBs.

One is Shahinians charges to me for his "surgery"-around 60 grand,
The others are Brotman Charges.


What you think?

 ONly a Penny? I think I owe a considerable amount more than that!

I know what is a "write off" is, anyone want to explain a little more?
HERE THEY ARE.


Username  neuroma
password tumor

SBI charges:
http://kuato.ixtabai.com/shahinian_eob.jpg


Brotman Charges:
http://kuato.ixtabai.com/brotman_eob.jpg



If what I think it says, I am going to get S#$% faced drunk and celebrate.
If I am wrong well, then, shoot me.

[HeadCase2]

 Excellent news on the bills!  The outrageous part, to me, is the hospital charging $165K, then making an adjustment of $159K, so that they are willing to take $5.5K from insurance.  If you didn't have insurance, the hospital would be trying to collect the full $165K.  I don't think they should be allowed to do that if they're willing to take $5.5K from insurance.  This is the type of inequity that needs legislative action.
Regards,
 Rob

[ixta]

i'm holding off the celebration for a month or so and keeping mye eyes out for some bills.
I met with an audiologist in town who was patient enough to have me tell him about the transear.
Looks as though he is very eager to learn about it since he designed something similiar while he was in gradschool.

I may setup a Mold appointment with him soon. I hope insurance helps with that too

[Boppie]

In the beginning my insurance stated they would cover a TransEar.  I have mine now.  I can honestly say that the insurance contract "allowed" about half of the $ my ENT/audiologist wanted.  We will need to pay a bit more in cash out of pocket beyond our mold deposit.   Some coverage is better than none for sure.