ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: ixta on November 07, 2006, 09:36:24 pm
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I am aimimg for SBI, but am totally turned off by patient care there.
Roxy seems so busy, Matt seems so doing other stuff that I believe I am a hindrance to them.
One feels guilty asking about prices, such a "oh well we have people from all over the world that come here" attitude, that one feels like soo out of style and too poor to even try.
I feel as if I need to get my poodle to the groomer in Beverly hills right away after talking to them.
Any experiences and how to get a straight answer?
I have thoroughly read the posts that eron and chopper have put up and even talked via phone with one of them.
I am about to send real film xrays to Dr. Jho to get an opinion, or throw in the towell and get the traditional chopjob.
I even asked the ceo of this site on the phone about Endo, and she said "No comment", but I can comment on radiosurgery"
I had a free consult with top endo neurosurgeon at ucla already and it was free.
My consult with SBI was pricey and he was on his cell phone on the way to the airport.
Endo work is done in Korea, Canada, Cuba, but here? wtf is going on? :'(
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I know chopper had great results but..will tell you from experience. If you are not comfortable with the staff and treatment you better look elsewhere. My first consult kept me in the dark..what was routine for them was not for me. I did ask price and got a vague answer which upset me more than the surgery. I'm a single mom who was trying to plan what I needed to do. They neuro guy was too busy to do my phone consult, just expected me to show up on Fri for pre op and surgery on Monday. I walked away and went elsewhere. I have since heard from others who went the first route I was going and did not do well. Which convinces me I made the right choice.
How big is your AN? Endo is less favorable as if there are complications they can not get you opended fast enough to fix it. I'm not that big of a risk taker ;) I know Chopper did great, he's back to work in his brrr cold place. I'm sure if you email him directly if he can he'll answer you. You deserve to get the answers you seek without attitude, and to get treated like you matter and are royalty! After all it's not a minor surgery.
All my best,
M
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You may try the "California attitude" - Tell them exactly what you said in the previous post. Tell them you have questions & need assistance. We did not have problems getting any answers from them (a year ago), but we were probably a little pushy/desperate. As you have read, we too, were broke (college kids with no real material possessions) but when we considered that it was my husband's life on the line, cost was no longer an issue. I completely understand the money issue...luckily our insurance finally came through for us. We fought them long and hard. Again, that was just our experience. Please don't do anything you dont feel comfortable with. Just a tip... you may ask them what would be the total cost if insurance pays nothing. The price difference was huge for us & helped us make up our mind - although prices may have changed now.
Best wishes!!
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My ENT said the MRI measured 3.0, Dr. Mangham at seattle ear states larger.
Dr. Shahinian at SBI said a "grade 4" large tumor.
Dr. Jho asked me to get film and I looked at them and bout S#@$ my pants. It looks huge on film.
I set up a site like Enron did
http://www.thestatus.com/index.cfm?fa=patient_login&sid=0
h
biologyfly06
I have a tentative date for 11/27.
I guess according to Matt, the Main assistant, they stopped using Cedar Sinai as a operation place due to problems with sterilization.
They now use the Brotman center in culver city. Chopper, did you have your s taken out at the Brotman?
http://www.brotmanmedicalcenter.com/
I did a search for Shahinian and found.
RE: Hrayr K. Shahinian, M.D.
To Whom It May Concern,
Membership to the Medical Staff of Brotman Medical Center is contingent upon compliance with the Bylaws, Rules and Regulations of the medical staff and satisfactory participation in duties and responsibilities of the medical staff as assigned.
Please note the following information concerning the below referenced practitioner:
Physician
Hrayr K. Shahinian, M.D.
Specialty
Skull Base Surgery
Appointment Date
01/25/06
Inactive Date
Staff Category
Provisional
We are not aware of any information that would preclude recommending this practitioner for appointment/reappointment in your organization. This practitioner has not been the subject of a disciplinary review, has not had his license suspended and we have not filed and 805 reports with the Medical Board of California or adverse reports to the National Practitioner Data Bank. We are not aware of this practitioner having any health/mental condition, which limits or impairs his clinical competence. All members of the Medical Staff are evaluated through established criteria-based medical staff monitoring activities.
Sincerely,
Medical Staff Services
His whole resume is on Cedar Sinais site.
I am sure he is great in person.
It is just Clinic staff is a turn off,
I was angry once and made it known directly by hanging up. I was renewed with a major PR repair phonecall from thier top staff. It was due to, Their secretary, (the one that answers now) had me on hold for five minutes listening to elevator music... I work at an office too, I was able to put the music on the speaker phone while I used another phone to call them. HA!
WHAM ANSWER< SBI may I help you? Hey, you guys have me on the line listening to music, is The nurse there, "Oh just a minute here she is, she's on her cell phone"--Hi Mr. How can I be of assistance"?
Just the other day, I called down, and again, felt like I was being a hindrance because the person I needed- expressed having to leave an important meeting to talk with me, as if I were a bum on the street.
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I did have mine done at Brotman, which is a good thing since they are in my old insurance network. An older facility, but not bad overall.
I agree with your concerns on the part regarding the staff. They are indeed busy as hell, this I saw first hand. Before going out there, I had to hound them a little bit to get answers in order to make flight plans, hotel arrangements, etc. They did come thorough though, it just took a little pressure, and a little longer than I liked. From what I saw though, the office staff are minimal, and work hard with a lot of other duties aside from answering the phones. Still though, simple solution would be to get more staff in there.
After talking with the Dr., as well as the staff in person, what you see as an attitude I saw a little different. The doc is extremely proud of his work, and very confident in what he does. No doubt about that. Once you're in the process of getting things done, the paitent care, aftercare and his bedside manner are exceptional. He's confident and firm in getting what is right for you. Hell, he even *****ed at me for not sleeping as elevated as I should have, and explained why in a frim but "hey, I actually give a damn about you" tone.
Food for thought in regards to the initial vibe you got:
I initially made an appt at Johns Hopkins..and they were worse! It took them weeks to get back to me to schedule an appt just for a consult, even after calling multiple times to get answrs. Good thing I had time to burn. Even after canceling the surgery date, I continued to get paperwork and letters from the docs on how they looked forward to cutting me...er....working with me. For a top rated hospital neuro unit, wow....just...wow. You'd think they'd have their stuff together a little more.
Most importantly, don't give up! Do what you know will be best for you, and it will take time. Took me well over a year to settle on a doc and make plans. You will thank yourself in the end for all your hard work.
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Christ I am trembling.
not more than five minutes ago I was on the phone with them trying to get some concrete information about the transfer of the 11, grand, bank account info, pre op surgery clearance, etc, and RACHEL said, "roxy will be in tomorrow", I pleasantly voiced my concern about being given the run around, no phone calls and stated that it seems I am a hindrance to the work of SBI. Rachel seemed upset that I had already gotten pre op onfo driectly from Roxy, and I told her that I just had my blood work done. It seems that I have been ahead of the game by networking directly with Roxy.
She pleasantly said curt and sweet, "it looks like then, for now on our manager will be taking care of your case" AND THEN HUNG UP ON ME!!!!!!!!!!!!!!!!!!!!!!!! :'(
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ya I am jumping out of the loop on this one.
as far as I am concerned, bridges are burned with two specific staff there.
I'm going deer hunting to get my mind off "things" for a couple days.
We were looking at staying at places near the brotman, and venice beach is close which is cool.
I can go to the beach and hear the ocean for the first time with one ear. what a thrill :-[
Chop, where did you stay ?
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BOOM, 30 mins ag0-damage control PR phone call from Shahinian's right hand who was in DC spent a good 30 mins with me patching things up.
She is personaly taking over my case.
Apparently mine is a priority case since most people schedule these removals 6-7 mos in advacE?!
and they are juggling schedules.
Will keep you updated as info comes.. :D
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I want to say it was an Extended Stay suite in the Manhattan Beach/El Segundo area. It was a bit of a drive to the SBI office, but close to Brotman, which is what really counted. Awesome Japanese restaraunt nearby named Taiko, grocery store and whatnot very close also.
If soft beds are your thing...that place is perfect. Unfortunately, they gave me the worst back pain of my life.
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I fly down to LA this Tuesday. Preop meeting this wed. and since they are closed for thanksgiving th and fr, sat sun, operation not until 5am the following monday. :'(
I'll keep you updated on how the meeting wed goes.
I was able to get preop blood tests and h and p done up here. Lets hope they don't do more..
Chopper-Eron--you both mention serious leg pain post op due to the way shahinian had you on the operating table.
What can I ask him to do in order to reduce post op pain?
Place pillow under hip? between legs?
Do they place you in a chair?
if thats the case. my sciatic nerve will be cutoff for a long time..
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Good luck ixta!!ÂÂ
I am heard many, many good things about SBI and the "endo". A dime sized hole sounds
good to me.......
Kathy
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Chopper-Eron--you both mention serious leg pain post op due to the way shahinian had you on the operating table.
What can I ask him to do in order to reduce post op pain?
Place pillow under hip? between legs?
Do they place you in a chair?
if thats the case. my sciatic nerve will be cutoff for a long time..
I don't know what can be done to help with that. I suspect I was on my side and positioned in a way that a decent amount of pressure/body weight was on the outside of my leg for the procedure. Some sort of cushion may help out though.
For me, the leg pain was not too bad, the back pain from the hotel bed was the killer.
Let us know how the preop meeting goes!
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woot! I just got into LA tonight and back from Dennys Culver City.
The brotman is around here, tomorrow we are getting a rental car and preop meeting at SBI, hopefully can talk to Shahinian directly!
I will ask about the leg pain issue, ask him to put pillows or have someone do range of motion 1x an hr! but not as he is operating! oops, we bumpt the cerebellum!
I have preop tomorrow, then its four days in LA.
http://www.thestatus.com
h
biologyfly06
for updates. updated pix soon
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Well I just had my pre op today with Shahinian, Roxy, and Matt Rivera.
We were a little worried trying to find the place. Thinking there would be a SBI NEON sign out front, it was tucked away in a tall tower with a bunch of other medical related business offices.
I actually learned something today also.
I always thought that feeling in my face, the numbness in my lip, the metal taste, or tingly nose was resulting from the tumor pressuring on my facial nerve.
Shahinian made it clear that facial nerve is STRICTLY MOTOR..movement and such.
an TRIGEMINAL http://tinyurl.com/w3tbt NERVE is SENSATION, TASTE, FEELING.
So the tumor itself has grown large to compress the trigeminal nerve.
I may have to post pix later cuz i forgot my US?B cable!
I have more info bout the visit on thestatus
h biologyfly06
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Hell, he even *****ed at me for not sleeping as elevated as I should have, and explained why in a frim but "hey, I actually give a damn about you" tone.
Food for thought in regards to the initial vibe you got:
HA! He was direct during my preop, which I respect-regarding the relationship. He stated, "you will get to know me and I will get to know you rather intensely".
I mentioned I heard about a previous patient he balled out for not sleeping the 45 degrees-he chuckled
pd me off though the morning of the meeting-(we had gotten in from out of state at midnight)-got a call from Katie-secretary 8am in the hotel-"can you guys make it in around 1130 instead of 130? I politely said no.-you guys said 130"
I am sure it was because the Dr. had something to do -(day before turkey day)-or because they could only get the notary at that time.
We get there and Roxy told us they did not have a Notary.."could not get one"-since day before turkey day perhaps..
The room had major dust on the table but it was cleaned, and the meeting started right away.
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HA! He was direct during my preop, which I respect-regarding the relationship.
Indeed! A no BS approach...couldn't have asked for anything better. Straight forward and blunt with no sugar coating regarding what may or may not happen after the surgery.
Nice that you got in there so quickly. Hope all goes well with the procedure and well as the recovery. I think you'll be surprised with the speed in which you go from feeling like ass (day 1) to being discharged, then starting the recovery process from there.
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Well some new info today.
Always wondered why staff, and even the Dr. seemed on edge.
I Recently dug up some legal info.
http://tinyurl.com/y6ral7
Not to say that this is the reason, but chopper-eron- a question...
Did they have you sign a big document that states you can not do any post operation litigation, only through arbitration?
I have never had that experience with Drs.
From other, as he would state, "competitors", or even the ceo of this site mentioning, "no comment"
has me suspicious.
..and then the Cedar Sinai change--why to the brotman? They state, "cedar sinai had problems with sterilization"
I don't buy it.
If any of you out there no much about medicine law and know how and where to google, drop a comment please.
re:
Accusation filed : 1-13-05
Accusation withdrawn : 5-26-06
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JUST WANTED TO LET EVERYONE KNOW, MY WIFE JUST HAD GRADE 4, 4CM REMOVED MONDAY AT SBI, COULD HAVE NOT ASK FOR BETTER OUTCOME, SHE WAS OUTSIDE AT HOTEL TODAY EATING LUNCH IN COURT YARD. SHE IS LITTLE WEAK, BUT OTHER THAN THAT ALL IS WELL. SHE EVEN HAS SOME HEARING LEFT, BUT SHE ALSO HAD NORMAL HEARING BEFORE. THE DOCTOR WAS AND IS AMAZING!!
SHE IS NOT SORE ON BODY AT ALL, COULD BE DUE TO BEING A WOMAN, LESS WEIGHT? WE ARE FLYING TO SANTA ROSA TOMORROW AM TO HER MOMS, THEN TUESDAY BACK TO MI. I'LL HAVE HER PUT UP A POST ON SAT. WE HAVE BEEN WATCHING THIS BOARD FOR SOMETIME AND I KNOW SHE WANTS TO SHARE HER STORY.
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how weird man, :D
Shahinian mentioned he worked on a "female patient" just this last Monday! ha! that must be your wife@! what a small world.
cool goin2LA!, I just added u to messenger, and sent you an email with my cell-ring me tomorrow if you can or IM me if use messenger.
so much for the patient to patient program they never set me up with,
WooT thumbs up for the NET~!@!@! ;D
I got a pic up of the consult on the site
thestatus.com
h
biologyfly06
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GOINTOLA:
What great news!! Your wife had a bigun.........looking forward to her post.
ixta:
Good luck Monday - I will be watching thestatus.com for updates.
Kathy
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Hell this Forum is great, what would we vulnerable patients do wo it!
I got a call from goin2las wife today and we chatted, Shahinian just took her AN out this last Monday and she seems to be doing fine!
Thanks for the call wife of goin2LA!
Also I called Zach, he had his out 2 yrs ago but had similar experiences with SBI!
Great phone support guys n gals! thanks alot!
Only freaky feeling I'm getting is I may not wake up. I've never had gen anesthesia before, I sure as heck ain't watching SAW3 tonight on HBO! :o
We spent some time at Santa Monica Pier today and rocked out to the Hare Krishnas on Venice Beach lol.
I haven't been able to get asleep till 2am lately.
In surgery, they use MAST pants (http://www.buyemp.com/tmp_image.php?item_id=1051001&width=150&height=150)???
I have worked in EMS and understand these are used to compress your lower extremities in order to push blood up to where you need them during a traumatic situation.
I do not understand the physiological reasoning for them to prevent blood clotting. I know that there has been controversy in the field of EMS due to decompressing them too fast can cause shock and such. OR staff need to watch blood pressure and what not.
I asked shahinian to video and photograph the resection. I am sure he will do it in parts.
If the community here wants them posted I will. I come from Health background and EMS so blood does not bother me.
It is for people that want to know what physically is going on, I know chopper posted some and I appreciate those chop. 8)
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Were you told you would be having the MAST pants specifically? With my 2 AN surgeries and also in the hospital where I work I have only seen SCD stockings used. Sequential compression and can't think of the last word. They aren't as "complete" covering as the MAST so I assume less risk for BP problems. They are just 3 sections of rhe inflatable material which velcro around the legs. 2 around the lower leg and one just above the knee. The reasoning for use is to prevent blood pooling in the lower extremities. I have never seen the pressure set high enough to cause BP problems.
Hope this helps. Cheryl R
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I had the "pants" on too for my surgery and the following day. Then, for my total hips a few months later, I had the same but shorter. Only up to the knee. The nurses called the short ones "nemo boots". My understanding is they keep the blood moving around because blood pressure is lower in the legs? and they will prevent clots from forming and moving to a vital organ.
Good luck to you tomorrow, Kathy
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Were you told you would be having the MAST pants specifically? With my 2 AN surgeries and also in the hospital where I work I have only seen SCD stockings used. Sequential compression and can't think of the last word. They aren't as "complete" covering as the MAST so I assume less risk for BP problems. They are just 3 sections of rhe inflatable material which velcro around the legs. 2 around the lower leg and one just above the knee. The reasoning for use is to prevent blood pooling in the lower extremities. I have never seen the pressure set high enough to cause BP problems.
Hope this helps. Cheryl R
Cheryl, thanks for your comments, I suppose they are different pants, i've only had experience with EMS type.
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Made a movie, Tomorrow is the DAY!
I wonder if I will loose any weight with that thing out.
http://tinyurl.com/ymehzx
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well its 5am, day of the operation, I'll post asap, and my friend should be updating my status page starting around 9am or so.
wish I could update it!
status info above somewhere..
I didn't eat past midnight, stopped eating around 845, hope it doesn't end up on the floor of the OR.
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Good luck ixta. We are thinking about you!!!!
Flier58
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oh funny movie....let me know when you win an academy award for it ;o) sending you good thoughts today!
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I didn't eat past midnight, stopped eating around 845, hope it doesn't end up on the floor of the OR.
Hope you'll have a towel handy when they come to move you around at some point in the ICU. That was the worst time of the stay there....ralphing thanks to that darn anesthesia. Thankfully the nurse was on the ball and had a towel near!
Hope all went well, and look forward to updates on your recovery. Knowing what your going through, there are a lot of people here no doubt wishing you a complication free and speedy recovery!
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im back slow mo, check out my posts on the status. I am going for MRI now, my mental status pretty low. I am slow mo vertigo like that u2 song. thanks for support
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ok my mental status is more attuned than before. I had the post op mri done today at 230 in riverside. then ate some tacos, (could stomach them)
Shahinian has me on antivert meds, some pain if needed, and some cipro, antibiotic. i was on steroids for internal tissue healing via
IV then oral last 2 days. they held me one extra day due to the vertigo-the size was five cm measure from the IAC internal ear canal. compressing on the stem, cerebellum. since its vacant space now. and no hearing. ..vertigo is normal since my visual tracking was coordinated with 2 ears. now its just adjusting. freeway tracking in passnger seat, and elevators with mirrors are the worst.
the secondary is getting used to mono sound since its not Stereo now. It is Flat instead of layered. cant identify where sound comes from.
better to have it tottaly gone on my left side. my good ear compensates better.
so its better and badder.
for badder, its because its flat.
I am in a taco place. I hear the salsa music over the speakers the people ordering, my parents orderin, somebody gossiping. all on one plane. with 2 ears functioning the sounds are layered and can be identifed directionaly.
the worst was waking up post op 5 hrs and raising my fingers to itch my face, my peripheal vision caught my finger going up and I went into the jimmy stewart scene of him falling out of the window. :(
I posted some fotos of "kuato" on flickr, i will post videos soon of the total resection.
at my request i asked shahinian to record it for me.
it is of course medical type fotos. so keep that in mind, good stuff though for medical fans
Flikcr Kuato fotos: look closely you will see his eyes.
http://www.flickr.com/photos/61996436@N00/ (http://www.flickr.com/photos/61996436@N00/)
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I didn't eat past midnight, stopped eating around 845, hope it doesn't end up on the floor of the OR.
Hope you'll have a towel handy when they come to move you around at some point in the ICU. That was the worst time of the stay there....ralphing thanks to that darn anesthesia. Thankfully the nurse was on the ball and had a towel near!
Hope all went well, and look forward to updates on your recovery. Knowing what your going through, there are a lot of people here no doubt wishing you a complication free and speedy recovery!
ya chop vertigo was the worst, i had the plastic bucket bent over the side of my bed, then doubled when i accidently hit the TV on and Jerry springer crowd was going WOOWOOWOOO, and the BP cuff inflated at same time, that put me over the edge. regarding the pre op eating i stufffed my self on lasagna at a friends until 800, then I never remebered evacuaing it. so i either crapped my pants in the ER (diapers) or hurled it up and they suctioned me, but I doubt that since during intubation they plug your esophagus with a baloon to not compromise our airway if you hurl. for now its kinda of the "mystery bowel movement" the nurse told me bm usually passes every 2-3 days usually, going on four now..
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ixta,
Congratulations on the eviction of Kuato. I recognize some of your descriptions of hearing and visual effects. Just know that things will improve quickly. When you feel up to it, search the web for vestibular retraining exercises, they can help. And in a few days, see if you can sign up for vestibular retraining with a Physical Therapist. Best of luck in your recovery.
Regards,
Rob
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See, this is what forums are for, they are so awsome, i didnt even know PTs had specific Vestibular excersices. Thanks headcase!
I am still pretty slow, and guarding. I thought of some great analogies of one side hearing loss I'll post later. I plug my good ear sometimes to "get some rest" since 100% of sound goes into that ear now instead of 50 and its still overwhelming/ Plus it being on one plane i cannot distinguish where the heck sound is. the sound is not layered. -imagine seeing with one eye-no depth of field. and the muscles strained from "taking it all in".
Also having some probs with family members that are in 5th gear and I am still in 1st pr 2nd.
my mom told me to hurry it up on the escalator. I told her like a zombie and monotone...turn
" hey, turn your head like the excorsist movie 30 times, then try to get on, walk on and get off an escalator."
She understood and became quiet.
I update my blog on thestatus more than here.
h
biologyfly06
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Welcome back Ixta...........
I have been enjoying your stuff on thestatus.com - my, what a ugly tumor you HAD.
Denise had an experience like the escalator thing with her sister. They were walking on a wobbly dock......you know like: whoaaaaaaaa. Denise said: thats what it is like for me all the time..........her sister said: what?????? You are kidding???
Good luck Postie - it gets better every day. Kathy
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Thanks Kthy, I think I talked w u on the phone before mine was removed.
I am thinking to sign myself up for some outpatient Vestibular Balance PT for sure by Thursday to help things along.
I hope I dont have to depend on Anti VERT forever.
Ive noticed my good ear is becoming like a bionic microphone though..kind of like getting a new "perception". It is overload at times and I carry an earplug when headaches or over load comes.
This morning I had a bad headache. I had too take one of the "as needed" pills for pain.
re: this theme, this is the first morning I was semi lucid.-and of course more aware of pain. maybe the worst of the pain is to come... I am hearing rumors of migraine side effects Im not looking used to.
Showers feel really good, i just stand in the shower like a wilted tree and enjoy the water going over my head.
my "no ear" feels like an appendage-a cauliflower with no purpose. :'(
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Hi Ixta:
I am not the Kathy you talked to. There are a few on here and a Kathleen too.
My AN ear stuck out like a Dumbo ear until the swelling went down. Now, it is closer to my head than the other one. You non hearing ear does have a purpose......it is for balance!!!
Good luck in that department, Kathy
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Hey anyone know what happens to the middle ear organs, cochlea and such once the Vest nerve is chopped off?
I was wondering about the physiology of pressure, because I dive. and also. the plane flight..nothing popped going up but I felt my good ear decompress with that PEWWW sound and my AN side (now gone) did not decompress.nothing. I was kind of tense thinking a cork would pop out on the ceiling or something.
Is the Vestibular nerve the area that we decompress?
Is the cochlea getting blood still? will it wilt up and disolve in my head?
I wish I wouldve thought of these at the post op.
anybody with anatomy phys knowledge free to post please or forward me to another thread if it already exists.
Thanks~! ;D
Hey CHOPPER! did you sign yourself up for any outpatient Vestibular Rehabilitation with a Physical Therapist?
Shahinian didn't even mention it, so I am taking it upon my self to do it next week just to help get on my feet faster.
here is a foto about 16 hrs post op
of the sutures. the yellow is Iodine to keep the wound sterile as can be. the lense is on macro so it looks big.
(http://e.ixtabai.com/shahinianAN.jpg)
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When one has a Translab approach the whole ear parts are gutted to get to the tumor. This approach presumes that the hearing nerve is stretched and flattened by the tumor anyway and the hearing is not going to be salvageable. The vestibular nerve gets cut too.
In retrosigmoid I believe the hearing mechanisms are sometimes spared.
Don't know what they did on your approach. Did you have enough good hearing left in the AN side?ÂÂ
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I agree with Boppie that with the Retrosigmoid approach, they often try to save hearing. Your endoscopic surgery, looks like they took a similar path to get to the tumor. Hearing requires the cochlea, and the nerves and blood supply to support it. Ask Dr. S., but my guess is that you still have all that. Decompression only involves the outer ear structures, and my guess is that it is only afftected if swelling from the surgery affects that area.
Regards,
Rob
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yes boppie SBI gave me the squished wet spagetti analogy about the nerve.
ya they did a retrosigmoid, but via endoscopic.-did not have to retract the cerebellum.
I think it will be the norm approach in the next 10 yrs.
Shahinian and others were removing pituitary tumors through the nose I guess 10 yrs ago and now that is the norm from what i hear.
If I wouldve had traditional route on my 5cm tumor (measured from start in IAC) he said I would have facial paralysis on my left side for sure since the facial and trangeminal nerve were so compressed like a fist by the tumor. thats why i had it done with the 2mm microsurgical instuments under the endoscope instead of the traditional way of using some high powered magnifying glass and more invasive opening of the skull. shahinian uses a robotic arm with instruments he customizes himself.
here is a pic of the possible head position during resection. (http://e.ixtabai.com/brace.JPG)
It is from a BBC documentary on the SBI site.
The link is here. http://skullbaseinstitute.com/pressroom.htm (http://skullbaseinstitute.com/pressroom.htm) clik on the bbc tomorrow's world link and wait for it to load.
I highly reccommend viewing the BBC documentary to get an idea of the technology used and reasons for it. He has Various AN info on his site of course, the above video has to do with a trapped trangeminal nerve. he has an example of a AN procedure on his site too here, http://skullbaseinstitute.com/video_acoustic_neuroma.htm (http://skullbaseinstitute.com/video_acoustic_neuroma.htm) and explains that process more in depth.
Make sure flash is installed. or get a techy friend to figure how to see and hear the vid.
I went to traditional specialists before settling on endo. -and yes it was a rocky road trying to find out information about this approach and why alot of ENTs have never heard of it and why there is controversy. Other themes abound that I wont post until I am recovered from the OVER ALL PROCESS. Just look at why I started this thread and you will know what I mean, there was some frustration involved. My first threads were only done out of utter frustration. imagine the WORLD VIEW I explained, and WORLD Demand for ANs and ALL OTHER Tumors, cancer and such-to be endo removed-funnelled down to only 4 office staff.
I kind of analyze it like I am at the mercy of some guy with a gun at my head (tumor) and Clint Eastwood comes along, ( hear the whistle from good bad ugly), sees me helpless there, and I start yelling, hey man, CMON SHOOT HIM SHOOT HIM, clint slowly draws another cigarette, takes 2 deep inhales that seem like eternity, camera cut to crow on branch, clouds, sun, lizard,
CMON MAN,my frustration building..WATCHA WAITING FOR_!PCHING!POOWW< BANG CLANG of Gun on the ground, I fall, the thief dead-on top of me. On the ground I grab my mouth, push the dude off, and notice that my face was not shot off,(facial nerver preservation) and the gun at my head is gone. I slowly get up from the dust to see Clint already riding off into another town.
Now I just have to catch a stagecoach to my main hometown and recover.
I am open for contact just as eronbaum, chop and wife of goin2LA helped me through the process for those looking for endo option.
I talked to some guy that had his out @ SBI and he gave me the greatest advice but I won't list it hear. too funny!
i will post my resection video eventually but want to make it known that I am not a Doctor and am not proposing one style over another. That is a personal position. BUT THANK GOD FOR FREEDOM OF INFORMATION and THE NET-
and of course my pov posts here and my thestatus.com page is personal since I do/DID have an AN.
Shahinian did not have any qualms when I brought up Dr. Jho http://drjho.com/ (http://drjho.com/) and it seems he is familiar with his work and even mentioned that it is closer to those that live on the east coast. IMHO Dr. Jho doesnt have the PR machine behind him, and I believe that is why at least on the net-Dr. Jho http://drjho.com/ (http://drjho.com/) is rarely known and there is not much buzz about him on the net..I talked to him for free though and was about to send my MRI PRINTS to him for a 4th eval when Shahinian lined me up with a date-.
Also, I have a WORLD POV and know this is done in Korea and other areas.(i.e jho, not sure wher he studied though)- Shahinian has trained all over the world, speaks 4 languages, and has that same POV. I wanted someone with a WORLD POV that has acrued medical knowledge from ALL OVER to tackle my AN. I was not passsive at all while looking for Tx options. I was that pain in the butt kid that always asks why why why why and that didnt stop with shahinian.
If I am going to let someone into my head WHY COULDNT I GET INTO THEIRS. I made it known to all docs I saw for opinions and thier staff that I was in charge but of course ignorant about neurosurgery, etc.
I probably should be posting this a month from now, I am only 8 days post op so for all I know my head could fall off as soon as I get up from this computer.
It would be interesting to get some DR JHO experiences. For now, via Endo the only Endo patients here I have interacted with are eronbaum and chopper.THANKS GUYS! without their input, and phone calls I wouldnt have chosen endo. I like to hear from consumers themselves, and this whole forum is full of that!--unless of course we have some spies among us..heheee :o
head thanks for the decompression education.
and no, no hearing on my left side of course. I knew that was coming -or GOINg and prepared for it by saying goodbye to sounds while I hunted in September and October.
hearing was secondary.
it was compressing on my spinal cord too much and was affecting intercranial pressure. ICP.
Doc said I wouldnt have lasted 4 more years to 40.
I will post more later soon. the actual video of my resection.
, still slow, but a lot faster than 1 week ago! 12 hrs post op was a PITA!
(http://www.movieposters247.com/images/500023.jpg)
laters
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Great to see that you bounced back so fast.
Bruce
Ya Bru, I tried to document this process as much as I could-I had to blank out of course while my friend updated the status during the surgery. I got that idea from eronbaum, his status site gave updates during the surgery. I was impressed with that. I am not at 100% of course, thats for sure, its only been a week. i tried my one ear on music last night. its as if color photographs have been de-saturated-turned to black and white.
I just need to find the positives in this and I've always loved B+W Photography. ;D
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ixta,
I sure enjoyed watching the video. Thanks for posting the links. Although by tumor was a little smaller than yours I too am greatful for a good recovery and having the AN in the past tense.  ;D
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i found a better comparison than the same ol illustration of the head scene turning in the Excorcist.
for the removal of the balance nerve..
A carousel.
Get on the carousel and never get off.
Then the horses and sleds turn into your life.
bedroom, kitchen, bus ride, dinner making, friends shaking your hand.
Then thats forever. and your mind rewires "or gets used to it" as you support yourself on the carousel poles.
I sure hope my carousel slows down soon.
back is killing me-already had pre existing "conditions" w the back.
and that 45 degree thing is a sadistic joke.
doing ok though, i was able to brave two hours of "COSTCO" w only 2 people coming up to me to ask if I was alright.
Addendum: 2hrs later.
Got back from Pharmacy.
I have a Rx for refill cipro-antibiotic and this
http://en.wikipedia.org/wiki/Acetazolamide
Looks as though the drip may be accumulated CSF according wikipedia, but not sure
P
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At 12 months post op, I still have a "moment" when I am shopping in a store with tall aisles. It is a lot better than in the beginning but I get the whirl if I am shopping fast and have to search for stuff.
The library book shelves make me nuts!
Life could be a lot worse. But I wouldn't want a job as a shopper or a librarian! ;D
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Hi Ixta,
What a wiz you are with the computer !!! Thanks for the BBC post, ain't technology grand?
I've been going for vestibular therapy twice a week, only I'm a bad pt., need to do the excercises more at home. Definitely is working.
Have a good one buddy, Nancy
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that 45 degree thing is a sadistic joke.
No lie there. Trying to figure at an angle and stay there all night is damn near impossible.
The balance thing will get better...as well as the back.
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too cool.
I just got off the phone with Shahinian.
I am now about 12 days post op.
This last Tues a drip started at the base of the last staple.
I thought it was csf, wasnt sure. Called SBI, talked to Matt, said he would get back to me with a ossible prescription.
Waited.
Waited.
He called back, left a msg to see if still dripping, left a number to call.
I called direct to Shahinians right hand person (roxy) because they wanted to call meds in directly to my locl po-dunk town walgreens.
I call Walgreens today at 3-still no meds.
So I call the SBI on call service and pushed the number that corresponds with an "Emergency".
A lady takes my name and number and number to the pharmacy.
I hang up.
Ring Ring
Shahinian on the phone.
asks if have temperture, how long dripping and how drips.
Tells me I am going to get a refill of the cipro and another med to attend to the drip.
He explained the tumor was so big that the space is still being filled and the wound needs to drain.
He then said He was going to call it in and call me back.
Hangs up.
I kinda chuckled knowing he was going to call walgreens and get the press 1 for spanish, and all the submenus needed to get into the right menu to do a presc order in.
10 mins later he calls on his cell telling me its done, and to call him back on Mon-tues and send high rez fotos of the wound.
He said that the staples shouldnt come out on Monday as previously planned.
I then mentioned I see my local ENT to get the staples out This coming Friday-he was stern and direct and said I am not do to anything till he sees the images and talks to me on Tues.
I was very impressed with him not forgetting about me and keeping me under watch from afar-especially taking the time to call me at 8pm on Sat NIGHT! Cool
Very impressed.
i'm starting to think that my tumor might not have started due to "kuato"-but more due to this damn World of Warcraft fix.
any "wowers" out here?
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Ixta, I’ve been reading over your experience on the discussion board wow what a trip. It's been three weeks and one day since my surgery our in LA with Dr. Shahinian and I'm pretty much back to a normal life. I had a great experience and am so glad I chose to have my tumor removed endoscopically. Funny story when I went to see my ENT to have my staples removed he actually had the nerve to tell me he still wished I hadn't gone out to LA. I couldn't believe he still was against it. I would like to know how many patients he has seen walk into his office with a smile on their face two weeks after having the traditional surgery. Oh well so much for doctors having the patients best interest in mind. I'm glad you are doing well. I haven't seen how things are going since the CSF leak. I hope that has healed its self. I have been praying for you daily and will continue to do so. Take Care and God Bless. Sara
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I had a great experience and am so glad I chose to have my tumor removed endoscopically.ÂÂ
x2
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im tired more than ever now, he said wait on the staples. I was supposed to have them out already. its 17 days post op. I my have them out this Friday with my ENT
My balance and gait are still diizzy and no way am i going o drie a car yet. two nights ago he started me on the anti drip that lowers inracranial hypertension, ,that stopped but when it stopped I think my head was "filling up" or finding internal equilibrium or hommeostasis with the outside. then I found ou that I was at high risk for meningitis while I had that drip for a week! The only way I was able to get to the doc was bycalling his on call emegency line. Office staff did call me back but 3 days later! Just to see "if the drip was sill going on"-when previously they said they were going to call back in 15 minutes with prescription.
So Sunday night I dial the on call emegency # and wham-doc +prescription.
It's been three weeks and one day since my surgery our in LA with Dr. Shahinian and I'm pretty much back to a normal life. I had a great experience and am so glad I chose to have my tumor removed endoscopically.
Hey Sara Thanks soo much for calling me the dy b4 my surgery.
My wind is stil knocked out of me due to the size of the tumor taken out and the space is still being filled up, at least thats what Shah told me about the leak.
I am planning to take the whole month off and perhaps into January. I am not sure yet. since im kinda flying alone here I think I am going to see a neurosurgeon up here for after care.
My face is about 35g% weaker on my left side still, I can barely close one eye at a time without them both closing, and my smile is a grimace now straight out of lemony snicket ha! Ive been wtching lots of dvd moives *)
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Hi Ixta, hope your healing goes a little better from now on.
I wish I had taken 4 months off from work, the way I felt. I went back to work 2 months post op. Try to take as much time as you can off - the fatigue is UNBELIEVABLE !!!!, so's the balance, etc.
Wishing you a peaceful heart, nancy
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Ya nancy whats with this fatigue! I slept 13 hrs last night. ;D
woot
just got off the phone with Shahinian again,
states that the wound looks good(I sent him high rez pix)
and the drip has stopped. I am to continue taking the AcetaZolamide until the bottle is out to decrease intracranial hypertension and CSF flow.
He said to see ENT this Fri to get EVERY OTHER staple out starting from the bottom. Then over the weekend, if no leak-Get the rest of the staples out Monday-Then Staple Frankenstein free@! So instead of the original 14 day post op staples out-mine is going to be 21 due to CSF.
Still havent gotten out Xrays back yet our pre and post MRIs
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ok got the XRAYS today ha! SBI had to fedex them overnight, I guess Shahinian was using them for some data i gave him permission to use in a book he is writing,
So, if anyone reads my blog, this is basically a copy paste of what i wrote there.
______________________________________________
Visitied my ENT expecting to get my staples out every other one starting from the bottom, and the opportunity to educate explain about this groundbreaking endo work of tumor removal...
He curtly stated he was just there to say that he was not going to take my staples out, he was not familiar with this procedure, and was not comfortable treating me due to the CSF leakage I mentioned that had stopped 5 days ago..he further stated that he thought I was going to see Mangham top traditional approach at Seattle ear-with whom he has plenty of rapport.
So in Essence, I was told that he didnt know that the guy who did the resection was a neurosurgeon-and that if so-I should see a neurosurgeon for follow up..
so....he referred me back to my PCP
I get to my PCP-he gladly takes out every other stitch then has a sit down w me explaining that the ENT nor the Neurosurgeon in town wants to see me due to them bo knowing about the procedure-not having any paperwork-and that Its just me, him, and skull base institute from afar-+ he mentioned that the neurosurgeon probably will not get paid for anything since Shahinian is doing the work from afar med management etc and that he does not want to get involved with another surgeons TURF, especially if he is not familiar with the approach.
So I call MATT up and he says, thats normal dont worry, I told him that I didnt know I was at extreme risk for meningitis at the time, but he (AND my PCP ) mentioned the CIPRO would be fighting that anyway...
So basically it comes down to me choosing my own path of treatment, ( less invasive, less barbaric etc)--and not having a whole lot of after care-but I am recovering ok and SBI has been on the ball from afar at least.
I think I will probably have to follow up with them in 3 mos and fly back down AGAIN.
Matt said the weak left eye shut, facial muscles will eventually come back--how many ANERs here visiting-how long did it take for tearing to come back? and was your motor skills weak from the start? I get the impression, the bigger the tumor, the more swelling post op the nerve goes through..GOing2 LA, states she is almost back to normal--smaller tumor perhaps?
I shouldnt feel too bad, last night a windstorm came through and knocked a neighbors tree over, it landed on their car n smashed their roof in.
I lasted 2 hrs at costco and was able to see a client for 1.2 hrs by then I was exhausted and am home now.
For those of you that are interested in why ENDO may be the future but for now, it goes against the establishment please copy and paste
http://nymag.com/bestdoctors/articles/02/kindestcut/index.htm
thanks to a forum support person for above link
Anyone here remember when their tearing came back in the affected eye if any?
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Tumor was 4cm. Shahinian said it was a monster. I went to my follow up with Dr Bojrab at the Michigan Ear Institute on Thursday. He is one of top ten surgeons for the traditional method and has even visited Dr. Shahinian at SBI. While he does not endorse endo method, he thinks the traditional way is still the best, he did agree to do my follow up over the next five years. I got the feeling he wanted to see me to prove that Dr Shahinian did something wrong. So far so good though no problems to complain about. I am having a little vertigo Dr. Bojrab showed me some PT exercises and wants me to have one appointment with a PT specialist to show me some more exercises. One of the exercises is bouncing a ball back and forth, another is focusing on an object on the wall like a light switch and moving your head up and down and then side to side ten times. We'll see if this works.ÂÂ
As far as the facial nerve we were told that due to the tumor it stretches like a sweater but eventually will tighten back up. It can take several months. We were told this by both Bojrab and Shahinian. I was blessed not to have any facial nerve problems or tearing issues.ÂÂ
I am watching your post and will keep you updated with my progress as well. Thanks for the article it was very interesting. To bad they didn't know about Shahinian. Take Care and God Bless!!!
I get the impression, the bigger the tumor, the more swelling post op the nerve goes through..GOing2 LA, states she is almost back to normal--smaller tumor perhaps?
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Hey Goin
You say your tumor was 4cm in the post above. your sig says 5. Was it 5 measured from within the IAC where it started? Thats what SHahhinian told me 5 from IAC, plus it was Soo Compacted "like a fist" he stated against the trigeminal and facial nerve so maybe that why my face is weaker. I am sure you cannot hear on the AN side?
I wanted to mention the importance of the article above that explains the political process and infighting between long standing surgeons in the profession and the new Tech surgeons either working already with endo in all sorts of surgeries, kidney removal, heart surgery etc, gyno, not just ANs
The Consumers will drive Endo into the mainstream I guarantee it.
It is not endorsed due to politics among surgeons, money, and fear of change, Mid level professional surgeons, and those that want to retire in 10 yrs have LOTS of experience in traditional methods, etc, Endo, according to the article is the future, and modern "open" surgery will be non existent in the future..it just depends on how medical schools train, and current Docs in the profession support the technology.
I am a consumer and I wanted the best of the best, and ran up against a wall, or even worse, websites dedicated to "AN SUPPORT" that offer only "3 PATHS" 1. WAIT, 2. Gamma knife. 3. Traditional (and all the approaches to boot) NONE mention Endo or at least "Some Aners have experienced positive results from Advanced Technology that has been around FOR OVER 10 YEARS called endoscopy"
According to the article, hospitals that want endo surgeons and get them, market through the web for tech advanced patients (Like all of us on this forum), and bring income to hospitals.
IMHO, Those who seek out or have already done Endo have thouroughly researched their options, and have to, even worse, swim against a tide that is against them from the medical professionals that are supposed to advocate for "patient self determination"-instead of jumping ship, hightailing it because they are not familiar nor want to be educated by "a patient" about endo.-My ENT didn't even want to take out my stitces and came across as a little upset that I didnt see a traditional top of the top @ Swedish Hosp in Seattle.
My PCP is open at least, he was able to sit down and watch a vid on the retrosigmoid endo approach.
I talked to the top Endo surgeon at UCLA, and he says he does some Endo surgeries, but not ANs yet, I mention SBI, he is familiar with them, does not mention alot, short lipped, maybe brings up the typical, "What if you get a bleeder", etc-
then the next day I find a vid of him advocating Endo for the future of brain surgery and recieving media attention for his work on someones knee-via endoscope.
When I was researching endo, I call this site, talk to the CEO, she states, no comment, then states she will gladly discuss gama knife with me and the various traditional aproaches.
Why not Endo? Politics I say, "No comment, No Comment". Healthcare culture/system in the states probably has something to do with some % of the roadblocks of getting endo to mainstream,
This work is being done all over the world. But here? not.
Except--I was able to find te name of a AN ENDO-er DOC in NY! So add him to the list of Shahinian and Jho for those interested in endo.
Christopher Linstrom
Acoustic-nerve tumors; encephalocele
212-979-4200
New York Eye & Ear
http://tinyurl.com/y4t5xt He looks like a Doctor at least, would be nice to know how many ANs he has removed via endo. It also looks like he is associated with a university, that may be more fluent about the dreaded word "insurance"-Dr. Jhos agency is like that too-
Hey good news @ 19 days post op! My eye on the left has more liquid now-like maybe 15% of tearing has come back, my motor nerve of blinking is a little faster than before, especially yesterday I had to crunch my good right eye down to get left to blink. I think things are slowly coming back-also I think my trigeminal is SLOoooowly coming back-I can start to feel some normality on the left side of my tounge. DAMN! woot! I just yawned again and some tears welled up ion my AN EX AN eyeball! :
again, the important article
http://nymag.com/bestdoctors/articles/02/kindestcut/index.htm
It is 7 pages long, at the bottom are hyperlinks to the next page etc.
Take Care and thanks for the support.
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It looks like endoscopic AN removal really is another option besides traditional surgery and radiation. I found a link to the 5th International Conference on Acoustic Neuroma that will take place in 2007. The program specifically has minimally invasive/endoscopic techniques as a separate item.
http://www.acousticneuroma2007.com/home.php
I found it very interesting.
Eve
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Marco...
It looks as if the egos of your local ENT and neurosurgeon were somewhat bruised. With attitudes like theirs, I wouldn't want them touching a single staple. The ENT's excuses to not remove your staples are so lame and transparent. I wouldn't be surprised if he told his buddy in Seattle all about you and felt somewhat embarrassed when you went elsewhere. I bet he wouldn't have had any problem removing your staples had his bud done the surgery. Oh well, his problem! Sounds like you have a good PCP though.
Bruce
Ya Bruce, it seemed though the main concern he had was when I mentioned CSF leak. He admitted that that was out of his realm of expertise and decided to refer me out which is very understandable. He is an ENT and has strong knowledge of traditional approached done through Dr. Mangham at Seattle Ear Clinic-Whom I did see per my ENTs Advice, but decided on Endo in the end.
the CSF has stopped. My PCP took out the rest of the staples this last Monday (21 days post op) and I started driving yesterday albeit SLowly and carefully.
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It looks like endoscopic AN removal really is another option besides traditional surgery and radiation. I found a link to the 5th International Conference on Acoustic Neuroma that will take place in 2007. The program specifically has minimally invasive/endoscopic techniques as a separate item.
http://www.acousticneuroma2007.com/home.php
I found it very interesting.
Eve
Yes, Eve, how Funny, I wrote Shahinians office about the conference above, and look I got an email from Shahinians HEad Nurse.
"Hola!!!
Well I spoke with Dr. Shahinian and he wanted me to inform you that he is actually speaking at this conference that you are talking about and Dr. Shahinian wanted me to remind you to take pics for him to see your incision area and the healing process.
Espero que todo esté bien… Dile a tu esposa que la mando saludos!
Matt"
I am sure Shahinian is presenting his work, and perhaps my tumor on a table in a jar for Barcelonians to enjoy looking at HAHAHA~!~Thats why he is wanting pix I believe,
I will try and upload the resection vid for those that are interested. I think the only place I found to host the file was a gaming site so we will see how long it lasts there. will post soon.
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IN fact here is the Video Resection. Please do not leave comments on the server site hosting it. I just needed space to host it. Thank you.
WARNING*** :o :o This video is an endoscopic resection of an acoustic Neuroma*** Only those that are not queezy of Blood should view, and those interested in the technique.
IT is not the whole 6 hr surgery of course. Shahinian filmed the approach-to the resection-to the cleanup of the IAC where the Tumor started.
I do not believe he filmed inside the IAC (INternal Auditory Canal)-where the Vestibular starts behind the cochlea-and where he severed off the nerve since the tumor took it over. Facial and Trigeminal nerve were compressed and rather compacted. But feeling and motor are coming back.
The Tumor was 5 cm measured from where it started within the IAC to the other side where it was compressing the brain stem.
File here http://tinyurl.com/y6shks The file is about 95 MEG and is a MPG file. It is hosted on a site that usually hosts gaming files so I snuck it in there with some secret language.
GET IT WHILE YOU CAN, I DONT KNOW HOW LONG IT WILL LAST. LAST ONE TO GET IS A ROTTEN TUMOR! :P
http://tinyurl.com/y6shks (http://tinyurl.com/y6shks)
Here is 23 day post op of the scar. Staples taken out 2 days ago.
(http://e.ixtabai.com/23dayspost2%20%28Small%29.JPG)
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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.
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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
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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 (http://www.emedicine.com/NEURO/topic496.htm)
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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. :D
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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. :D
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.
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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:
(http://www.advocurenf2.org/understandingnf2/table-46-1.gif)
Have a great day,
Jeff
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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 *)
-
Who was your endo at UCLA? Have been to SBI and would like to continue reseach.
-
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
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Ixta,
Are you out there?
How are you doing???
Alll the best
Pat
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I DIED! :o
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!
-
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 (http://kuato.ixtabai.com/shahinian_eob.jpg)
Brotman Charges:
http://kuato.ixtabai.com/brotman_eob.jpg
(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. :'(
-
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
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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 ;D
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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.
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i'm holding off the celebration for a month or so and keeping mye eyes out for some bills.
May want to wait a little longer. I just got my second appeal letter to insurance back on Friday, denied of course. So the process starts again I guess.
Meanwhile I've gotten a collection notice from SBI for a bill that I never recieved.
Be wary of the bills too, the hospital tried to double charge on a lot of things and had the nerve to send me a bill for $4000. Had them recheck their numbers and for some reason, haven't heard back since.
-
Coool chop, will keep the look out, i have an advocate in L.A. that is willing to go all over EOBs and bills to see if they are doing it right.
She gave one example of Doctors charging "reading fees", when a computer that does the actual reading, not a human. I hope she can bloodhound sniff around to see if there is anything fishy. I havent asked for the 11 grand deposit back yet from skullbase, gonna let it ride for a bit, see what creepy weeds grow in the garden, if any.
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Chopper: interested to know why you are getting denied. sorry if I missed it earlier,
searched but didnt see anything. I'm about to send SBI 11K.... already in it for the $600
call. Like ixta, Blue Cross ins., but maybe different plan. Do I need to give them written
advance notice ? tia folks.
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Ok the STORY HAS AN AWSOME ENDING!!
BLUE CROSS PREMERA HERITAGE PLUS ONE is my insurance I get through my employer.
I was assigned a Case Manager who advocated for me BIG TIME, and pushed for what is called a Benefit Level Exception, to get Shahinian as if a PPO.
So we were explained by SBI that we had to put down a 11 thousand deposit down before the surgery. They stated that if insurance did not cover the surgery, we would owe an estimated balance of 25 grand, of which the 11 grand deposit would go towards.
My insurance ended up paying the surgery which was around 60 grand, and insurance Also paid Brotman medical expenses which were like 150,000.
INsurance also paid some towards the 600 dollar preconsult meeting as can be seen in the letter. (they got the date wrong though. I had that in October)
I have received only one bill from the Brotman. 250 for an anesthesiologist, and 24 dollars for some med records I requested.
Still waiting for other bills, but if they don't come....ah shucks!
PROOF BELOW!!!!
(http://e.ixtabai.com/e/sbiletterweb.jpg)
(http://e.ixtabai.com/e/sbicheckweb.jpg)
(http://e.ixtabai.com/e/sbicard.jpg)
WHOOHOOO :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D
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Hey,
SO how did the surgery go...I am attempting to get info in regards to endoscopic surgery. There is actually someone in FL where I live who does it..and I am trying to compare cia nasal regular, or endo nasal...seeing that either way I need a biopsy..which sort of sucks as I was all set for CK, when Dr. Stated he really reallywanted a biopsy..well seeing where my tumor sits, when they perform a biopsy, they might as well remove said tumor....so after speaking ever so breifly with SBI, I was told to put on breaks, and compare proceedures seeing that the biopsy that more than likely will be performed on me would be a similar approach to transnasal approach and if they were doing that, they would more than likely take tumor...I could be good candidate for endo....Now of course, Moffit...(where I go Wed for one more official opinion) does not do endo....and they stated thier reasons why...I am trying to compare the two types..cause so far from what I have read, endo would definately seem to me the way to go....but I know there are differences,,,,,,,,,,,,Could you tell me how yours went etc....and why you chose that method???
Thanks
Ceeceek
-
ceeceek...
One thing that I read about endoscopic surgery is that it can be very risky if there is a concern about nicking an artery which there may be in your case. The problem is that with such a small opening in the skull it is difficult to stop the bleeding in time if the worst should happen.
Bruce
The following is in regards to my Acoustic Neuroma Tumor that was growing from the vestibular nerve, and into the brain cavity area of the cerebelopontine angle.
I asked this question specificaly during my pre op with Shahinian in his office. He mentioned it is a non issue due to how the endoscopic procedure is done in my case. and that those that question do not know the endoscopic process. ( Duh that's why I asked him *))
I felt it was a VERY important question to ask because I do not know about all the specialized tools he uses up their in my head that may or may not be used in case of "an artery" situation.
I know, and you can see in the video i posted, that a tumor is a living thing that is fed by numerous "arteries" and "capilaries", the instruments he uses core out the middle dead part first, then he carefully resects it off the facial and trigeminal nerves.
Of course, you can see how the tumor bleeds, but the tools he uses, actually eat at, and seals or suctions the blood at the same time.
you can see that in the video I posted. I think when we hear the term "its a bleeder"-all tumors bleed when they are resected. The endo tools used- deal with that perhaps.
Perhaps he meant when he said bleeding is a "non issue" is due to the overall less invasive technique that therefore lowers the risk of bleeding overall inside the brain cavity.
Perhaps bleeding is more of a risk with the traditional method, where surgeons have gotten used to "controlling" them if it happens, and therefore always ask this question when someone asks them about endo. I am not sure, and only a surgeon that knows both techniques should probably post. C'mon you Neurosurgeons We KNow your here! Post! hahahhaa :D
I think this question also gets into that "special recipe secret ingredient" area that endo surgeons have the answer to, but maybe it touches on the specific designs of the tools which engineers they contract with design and therefore it "is not in the open". I know they only use the instruments 1x, then they are in the garbage.
That's one reason why this route is soo expensive.
They are custom designing a ferrari to drive into your head, park there a while, then drive back out into the garbage can.
-
yes that is to be determined. According to CEE, he is not sure what type of tumor it is.
I know my AN and most others grow into the brain cavity-the cerebellopontine angle,
It never was mentioned that my carotids were threatened.
I did some googling and came up with a differential Diagnosis writeup and they ruled out an AN in some research document @ Baylor
http://www.bcm.edu/neurol/challeng/pat62/summary.html (http://www.bcm.edu/neurol/challeng/pat62/summary.html)
I copy and paste and highlight the topic that we are talking about.
Vestibular schwannomas, often known as "acoustic neuromas," typically arise from the vestibular portion of the eighth cranial nerve, and present with early hearing loss, tinnitus, and vertigo prior to invasion of the cerebello-pontine angle and involvement of other cranial nerves, such as V, VII and the IX-XI complex; involvement of cranial nerve VI is unusual. Schwannomas may be isointense to normal brain on unenhanced T1-weighted MR images, as in this patient, and may substantially enhance with gadolinium. Vestibular schwannomas in the cerebello-pontine angle typically manifest as round or ovoid masses, in contrast to the semilunar shape of meningiomas in this region. Many tumors of the cerebello-pontine angle can involve the internal auditory meatus, however, an enlarged internal auditory meatus is considered highly suggestive of vestibular schwannoma. On dye angiography, schwannomas are usually described as hypovascular, although occasionally schwannomas may exhibit substantial vascularity. Feeding vessels typically derive from the external carotid branches, with occasional contributions from branches of the vertebrobasilar system (7). Vascular supply from branches of the internal carotid artery would be extremely rare for vestibular schwannomas.
Again, the formal Dx has not been made yet, so CEE keep us curious posters posted!!
I remember seeing absolutely no carotid artery pumping in or near where my AN was located. If I did, I probably would've gone a cyberknife route of some sort. A+P people post!
I guess meningioma, pituitary or wild guess colesteoma?
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Ok the STORY HAS AN AWSOME ENDING!!
BLUE CROSS PREMERA HERITAGE PLUS ONE is my insurance I get through my employer.
I was assigned a Case Manager who advocated for me BIG TIME, and pushed for what is called a Benefit Level Exception, to get Shahinian as if a PPO.
So we were explained by SBI that we had to put down a 11 thousand deposit down before the surgery. They stated that if insurance did not cover the surgery, we would owe an estimated balance of 25 grand, of which the 11 grand deposit would go towards.
My insurance ended up paying the surgery which was around 60 grand, and insurance Also paid Brotman medical expenses which were like 150,000.
INsurance also paid some towards the 600 dollar preconsult meeting as can be seen in the letter. (they got the date wrong though. I had that in October)
I have received only one bill from the Brotman. 250 for an anesthesiologist, and 24 dollars for some med records I requested.
Still waiting for other bills, but if they don't come....ah shucks!
PROOF BELOW!!!!
You sir....make me jealous. Only paperwork I get these days is collection notices. STILL fighting the insurance company.
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Ixta,
This was FABULOUS news regarding insurance payment. I've already had surgery, but am not recovering, and am now suspect that my vestibular nerve took an alternate path to brainstem and it's still causing me trouble.
I'm considering going back in--yikes--but will demand the endoscopic approach. HEI doesn't want to touch me due to what they will find--major scar tissue, etc.
Thanks for sharing the news. My current insurance is the exact same plan as yours, and since you've paved the way, I might have a better chance.
Nan
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Nan,
Why do you need to have a second surgery and why wouldn't HEI touch you? They offered to remove my recurrance but I decided to go with endoscopic approach instead.
Eve
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Eve, please post a thread on your Endo experience when it starts. keep us in the loop, Good Luck! ;D
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Ixta,
I will post a thread on my endo experience but it will happen at the end of June. There is somebody on the forum who is going to have surgery there earlier and I begged him to do the same. This is so important! That is how I made up my mind, so undoubtedly it will help somebody else.
Eve
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Ixta,
...............There is somebody on the forum who is going to have surgery there earlier and I begged him to do the same. This is so important! That is how I made up my mind, so undoubtedly it will help somebody else.
Eve
Yes I think that person contacted me,
sjwill
He or she says he or she is having the preop 3/9 and the op a few days after.
Sjwill make a thread!
I think he or she mentioned he or she may be donig a Status.com page too. :)
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Question for you guys in regards to SBI...how did it go with insurance..I have read some post, but because they are out of sequence it is a little hard to follow..trying to get idea in case I am not happy with conclusion from guy in Orlando....and just for your curiosity...Dr. Medbery finally got my films and says same thing as everyone else.....too funny
Ceecee
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Question for you guys in regards to SBI...how did it go with insurance..I have read some post, but because they are out of sequence it is a little hard to follow..trying to get idea in case I am not happy with conclusion from guy in Orlando....and just for your curiosity...Dr. Medbery finally got my films and says same thing as everyone else.....too funny
Ceecee
ixta and others on this board have been really great at posting their experiences with the insurance
and their efforts are deeply appreciated. I'll let you know how things progress with SBI. My pre-op is March 9 with surgery on March
12. I'm sure the bills will come pouring in soon after.
I'm in it for about 11.6K deposit + the $600 phone call so far. SBI's deal is that they will check your insurance, and if it is
"OK", the worst damage you suffer is about 20K (e.g. your carrier goes bankrupt and SBI gets stiffed).
Of course, that excludes all other doctor/hospital costs. SBI is not associated with any carriers but "works
with them".
I have setup a "thestaus" page, but really havn't populated it yet.
Good luck Ceecee with your chosen path.
sjwill
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sjwill is probably having the 4am visits by Shahinian at this time and hearing the doc's famous quote, "I told you you'd feel like you been hit by a mac truck".
HANG IN THERE SJWILL! :) Ask for the Cherry Italian Ice!
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Question for you guys in regards to SBI...how did it go with insurance..I have read some post, but because they are out of sequence it is a little hard to follow..trying to get idea in case I am not happy with conclusion from guy in Orlando....and just for your curiosity...Dr. Medbery finally got my films and says same thing as everyone else.....too funny
Ceecee
Depends on the provider. Finally reached an end with mine, who (thankfully) paid for most of the hospital stay, save 1000 bucks. I got pretty much shafted on the Dr's charges though, 11k deposit+8500 more to come out of my pocket.
-
Question for you guys in regards to SBI...how did it go with insurance..I have read some post, but because they are out of sequence it is a little hard to follow..trying to get idea in case I am not happy with conclusion from guy in Orlando....and just for your curiosity...Dr. Medbery finally got my films and says same thing as everyone else.....too funny
Ceecee
Depends on the provider. Finally reached an end with mine, who (thankfully) paid for most of the hospital stay, save 1000 bucks. I got pretty much shafted on the Dr's charges though, 11k deposit+8500 more to come out of my pocket.
Sorry to hear that chopp, I was extremely lucky it sounds. Recently, I got a notice from my insurance company that they will not be paying for out of state surgeons as if they are in state ppo's! Makes me wonder..
The insurance that I have is Premera Blue Cross Heritage Plus 1. I have my post op 4 month MRI this Saturday and am hoping My head is empty.
-
Well hell, Chop you all can start laughing now.
The dream is about over I think.
I just got a bill 5 mos post op by Shahinians work partner Shahriar Ghodsian. (they share offices).
He is a pulmonologist, and I remember he checked my lungs at admission. http://www.skullbaseinstitute.org/ghodsian.htm (http://www.skullbaseinstitute.org/ghodsian.htm)
Then he did 3am visits per night, each lasting about 5-8 mins long. did a prog note for Shahinian to read i suppose,
Charges are as follows.
Inpatient Admission Level 3 650$ (This was Ghodsian saying breathe in breathe out, are you allergic to anything (this is when they were prepping me for surgery putting the sox and funny hat on while listening to "gregorian monk chant music". :o btw, I never knew this Doc would be involved and he was not mentioned in the preop meeting @ SBI.
(http://www.belmontabbey.org.uk/news%20items/monks%20singing.jpg)
11/27/06 Critical Care 600$ in recovery-eye tracking. does a prog for shahinian who comes in 2 hrs later (aprox 5am)
11/28/06 Critical Care 600$ eye tracking.facial nerve etc, does a prog for shahinian who comes in 2 hrs later (aprox 5am)
11/29/06 Critical Care 600$ eye tracking.facial nerve etc, does a prog for shahinian who comes in 2 hrs later (aprox 5am)
11/30/06 Discharge 700$ I don't even remember seeing him. Maybe he just signed a paper.
TotalDue 3150. >:(
So I am having a happy phone tag day tomorrow with MAtt Head nurse of SBI to find out how these creeped into SBI's set price of of 59 grand as seen here
http://kuato.ixtabai.com/shahinian_eob.jpg (http://kuato.ixtabai.com/shahinian_eob.jpg)
or maybe it has to do with some prices here.
http://kuato.ixtabai.com/brotman_eob.jpg (http://kuato.ixtabai.com/brotman_eob.jpg)
I remember meeting this doc at admission, he looked straight out of Chippendales Iran, sharp dude. Just checked in on me a few times in the recovery room, eye tracking excercises etc, small talk to see if my speech facial nerve was ok.
that WAS IT!
signed,
not happy. :(
(http://egghead.ixtabai.com/Animated%20Gifs/upset.gif)
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Well well, just got off the phone with MAtt and hes states even though Ghodsian is in the same building, and works for SBI, it is considerered seperate fees.
I don't understand.
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Ixta,
I just looked up the doctor and he is the internist. whenever there is a surgery, there has to be an internist taking care of you if you are an adult or pediatrician if a child. The insurance knows and expects it. My suggestion is to call up this doc and ask him if he submitted the paperwork to the insurance company. Chances are he did and what you are seeing is the comfirmation (I ahve had this experience before). I just spoke to Matt regarding other doctors who would be taking care of me and he hurriedly said that the internist accepts the insurance as a full payment, so chances are he will for you, too. Let us know how it works out.
Eve
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God lets hope so I thought this nightmare was behind me.
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I just spoke to Matt regarding other doctors who would be taking care of me and he hurriedly said that the internist accepts the insurance as a full payment, so chances are he will for you, too. Let us know how it works out.
Eve
We should let Matt know we are all in this together to form a united front! gogogo! ;D
on a more positive note I had a hearing test done the other day and my good ear is A oK.
I was supposed to have my follow up MRI today but I have been sicker than a dog with a sinus throat infection of sorts.
I knew I couldnt stand still in the MRI without coughing up a hairball like a cat.
oh btw eve they will have you do an immediate post op MRI the day you get out of the hospital. The place is located in the valley i think.
http://prohealthscan.com/ Matt will have all the info.
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Well a week ago my CM from blue cross was able to get ahold of ghodsians billing person.
They had sent the bill to the wrong adress. So my BC insurance took care of that scary balance Thank Goodness. :)
Lets hope this is behind me now.
Eve, you need to get a blog going on thestatus.com and have someone you trust document the times you are in surgery and the reports they get back so that we can be involved when you go under the drill in June @ SBI.
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Hello, This is Sara's husband, she is the one who had surgery the week before you. Was just wondering how your 6mo MRI went, and what the report said? Sara and I just got back from LA on sunday, will fill you in when have more time, but Sara is doing AWESOME !!!! :)
Take care, Steve.
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Hi Steve. I called Matt and he said they got my MRI and everything "looked fine"
I am getting in shape, and trying my first triathalon in August, I also got the transear and blue cross is taking care of that. I dont wear it much because it hurts alot and irritates. I only wear it at work meetings.
Also, I have been having some numbness come back on the left side of my toungue, I hope that kuato is not resurfacing. >:(
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I have not posted in awhile.
I am now about 9 months post op.
I am having numbness return to my toungue and it is spreading to my teeth and gums. I have an appointment with Dr. Steege in Seattle, Swedish Hospital just to give a rundown of my history Dx, operation, and post op issues.
My question will be if my trigeminal is just adjusting still post op...
or..trigeminal permanently damaged from tumor, and resection..
or..remission /gasp hope not!
Feeling in shape more than ever before and did my first SPRINT TRIATHLON!
see pix!
my goal was to finish and not crash into anyone dizzy! and boy was I dizzy getting out of the water!! woot!
(http://triath.ixtabai.com/thumb3.jpg) (http://triath.ixtabai.com/thumb1.jpg) (http://triath.ixtabai.com/thumb2.jpg)
I have a friend that has done Ironman, and I am having masochistic dreams of doing that before I am over" the hill" 40-
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Ixta,
Congrats on your triathlon and 40 is not over the hill! Please, post anything on that Dr. Steegle says to you on the trigeminal issue because a lot of people have it. I also have it; it is the same technique, remember. Best wishes,
Eve
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Congrats on completing the triathlon! It's good to have another swim, bike , run person on the board. Maybe we could form the AN survivor Tri club. Who else is in? ;D
Mark
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Way to go! Congratulations on completing the triathlon. The pictures are great. Thanks so much for
sharing them.
I just wanted to say that Dr. Timothy Steege is a really good Doctor. One of the top ones in the Seattle area.
Best to you
Raydean
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yes, I met with Mangham before settling on SBI, he mentioned him and Steege work as a team on the AN operations. I just hope he is open to see other surgeon's work, because a neurologist in my home town said "No way". about 2 mos post op.
He was inferring that he does not want anything to do with any other surgeons "work" or "art". I just wanted to talk to someone!
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Hi;
Is the Neurologist a neurosurgeon also? That would be unusual. Sorry, referring back to an earlier post in the thread re, Skull base.
Russ
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You mean Steege? All I know is that Mangham is a Neuro OTO ologist, and he works with Steege, who opens and closes the head.
I saw Mangham already before the resection and may go back to him if Steege refers me to him. From what I understand they are close knit.
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Well this time exactly 1YEAR AGO I was puking my guts out with VERTIGO!!
(http://www.personal.psu.edu/faculty/t/3/t3b/Tom'smediafolder/media%20SpCom%20415%20Spring%202000/vertigo3.gif)
1 yr post op with Shahinian.
I am doing very well atm, some dizziness still. Driving in a snow whiteout ain't so fun
I tried the transear but never wear it, going to research the BAHA more.
I am exercising more than ever.
I have some goals:
Summer 08_Complete Olympic size Triathlon
Summer 09_Complete Half Iron Man
Summer 10_ IRON MAN Coeur d'Alene (I hope not crawling to the finish line)
I want to thank all of you that carried me through last yr, ceecee jersey, chopper, etc.
Feel free to mail me through the site if need info on SBI. I'll be poking in and out of here once in a while,
for now MY WIFE IS PREGNANT GONNA BE A DAD! SUMMER 08 WOOT :D
God Bless All.
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Wonderful news about the baby I wish you all the best. Children can teach us so much if we let them. How to love and forgive. Be sure to always make time as the years go by and if something happens they will then turn to you. My son is my hero!
I am so happy to hear about your 1 year ann. Take good care of your wife as her ankles swell and her moods change sometimes from 1 minute to the next. ;D
16
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Ixta,
Congratulations on your one-year anniversary and soon-to-be Dad! It is an exciting time for both of you! Best of luck in everything you do.
Eve
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Hey Y'all, thought I'd drop an almost 2 yr update.
MRI's have been clean".
I gave up on the Transear, (dusty on the shelf) Tried Craigslist to sell to no avail >:(
Perhaps I will just wait till stemcell research can build a new nerve..
http://www.sciencedaily.com/releases/2007/02/070218131439.htm (http://www.sciencedaily.com/releases/2007/02/070218131439.htm)
..That pregancy last year was a miscarriage...(still trying).
..I finished my 2nd Olympic Triathlon and intend to do bigger ones in the next coming years. ( I came in 2nd to last place last one)-monohearing reduces race anxiety big time! I don't even know where I am in relation to the world so who cares! woot!
..The depression has been reduced through trying to live life to its fullest by being active(triathlons marathons)-(also reduces stress).
..I still miss "feeling" music. I am able to still dance salsa though.
..I bought a motorcycle!
Two thumbs up for all those that helped me through, and a handshake of those just Dx-ed and new to the forum.
You will get through it. ;D
Oh ya, lifeisgood, sorry I didn't get your email till a year later and had you to stand my seizure inducing animated .gif avatar.
I just replaced it. more of life here... http://www.flickr.com/photos/saxoch/ (http://www.flickr.com/photos/saxoch/)
(http://public.ixtabai.com/olympic08.JPG)
(http://public.ixtabai.com/klrmountain.jpg)