Author Topic: Arghh! Arghhh!!!!! My Decision has been crucified!  (Read 12063 times)

Keri

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #15 on: July 05, 2009, 10:36:24 pm »
Hi Sharon,
Why don't you PM Laura (allegro17). She had endoscopic at SBI in April. She had a surgery update place online (the status) but I'm not sure if she's kept that up to date.  I don't know if this will help, but maybe it will.
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Rick Everingham

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #16 on: July 10, 2009, 10:38:54 am »
ABR is the acronym for Auditory Brainstem Response.  A test for hearing and brain (neurological) functioning.  ENG is the abbreviation for Electronystagmography.  (I dare you to say that 3 times, fast).  A group of eye-movement tests that look for signs of vestibular dysfunction or neurological problems by measuring nystagmus  - a type of involuntary side-to-side eye movement.  I've never had these tests but they obviously have some value. 

I had both of these test when determining what type of surgical procedure and they confirmed that my vestibular function was completely destroyed and I have very little hearing function, I had lost 80% of the useful hearing based on the normal test.  Since I was having facial nerve issues as well, those test went a long way helping me decide on trans lab as the procedure to remove my AN.
1.5x1x1.2cm AN surgically removed by Tans Lab Jul 30, 2003, McGuire VA Hospital in Richmond, VA.

Helga

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #17 on: July 13, 2009, 07:12:19 am »
This is the best thread yet! Just poked around one last time before going to Boston, and all this information is just overwhelmingly excellent. I was very tempted to go with SBI, but had to re-mortagage the house to do it, and although my husband was ok with that, I was not. The thought of trying to convince the insurance company, who were "absolutely not, cannot happen" after many phone calls to my case worker, spend months writing letters explaing the difference between the surgical procedures, etc. etc., was just too much for me.
I also think Laura would be the best person to talk to, she still has the patient page on "thestatus.com", but has not updated it. However, it has her gmail address listed. Although, that's Laura, and this is you, and every outcome is different (I heard and soon will find out).
I do believe the recovery is quicker, due to the less invasive procedure. Outcomes? I think they are similar to other good/excellent surgeons with AN experience. Yes, he is a plastic surgeon, but that doesn't mean lipo and b--b jobs, reconstructive facial surgery is extremely complex and involves all our favorite nerves, so that was not a turn-off for me.
Good luck, I am off for my surgery at Tufts tomorrow. Unfortunately also don't know anyone who had it done there to "grill" about it. Have to say that my doc is also not impressed with Dr. S and the whole endoscopic procedure, but I also believe, as time goes by, they'll come to embrace it if it reliably produces good results. He is also not a big fan of this or other patient forums, he thinks you hear more from people that had not so good outcomes and need a place to vent (so to speak). So yes, they all have their bias and opinion, in the end you have to go with your own.
Best wishes, Helga

sharonov

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #18 on: July 13, 2009, 07:29:31 am »
Glad to read your message.  If your doc thinks that this forum is only for people with bad experiences, then you should mortgage your house and run to Shahinian.  I've heard from 5 people who used SBI, either by PM or on the board, and all sing his praises.  You'd think if he were such a quack that somebody would be here crying and dissing him.

For me, I have the $$ but both my husband and I are retired and with the economy & our losses in the stock market we are really careful and scared, as there's no way to make the money up.  We're young 67s and very healthy and able to work, but who's going to hire us?  People in their 50's are being rejected because of age, unless they're nuclear physicists or something which we're not.

On the other hand, as my son says, "if you have any one of the list of possible side effects, you'd pay the fee to get back to where you were and it would be too late."  Meanwhile the facial pain that was driving me out of W & W mode has abated so I'm back to happy denial.  Also, there's a slightly better chance of retaining what hearing I have left in the AN ear if I go the big-cut-in-head route, so that is also complicating matters (40% vs. 12%).
Sharon

another NY postie

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #19 on: July 13, 2009, 09:32:46 am »
Sharon, did Shahinian give you any statistics for what hearing preservation he has been able to give other patients through endo?  I have read many post happy with his outcome and happy with recovery time, but I don't think I have seen anyone who has preserved hearing and I know that is one of your big issues.  He seems to have same results statistically with facial nerve preservation and tumor removal - what about with hearing?  Also, endo is only done through retro approach,right? and not middle fosa, so already there is a slightly decreased chance of preserving hearing.
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

sharonov

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #20 on: July 13, 2009, 11:07:35 am »
Yes, Shahinian may only do retro-sigmoid.  I can't do mid fossa anyway because I also have the Trigeminal Neuralgia, which has to be handled retro.
He said that I have a "class 2" tumor with a significant hearing loss already.  If I had a "class 1"--namely a smaller tumor (less than 1cm?) and not much hearing loss already, I'd probably retain what I have.  Boomer, with a smaller tumor, kept her hearing, at least so far.

Did you talk with Brackman yet?
Sharon

another NY postie

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #21 on: July 13, 2009, 11:33:24 am »
Not yet, he said he would call when he got back on 13th which is today but I emailed him this morning because I had the ABR test on Friday and don't have the report yet and I have the ENG scheduled on Wed, so I told him I should have both reports on Friday.  So I don't think I will speak with him before Friday since he wanted both tests to help determine hearing preservation stats for my AN.  I will keep you posted when I speak to him.  If he emails me, I am going to ask him about endo.
Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Lilan

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #22 on: July 13, 2009, 11:49:15 am »
I can almost assure you that Dr. Brackmann is not going to be a lover of endo!

He likes a good amount of access to where he's going. This came up a couple times while I was out there -- I was already in his hands, not decision-making, but they did the double-surgical-approach way on me to ensure a safe approach -- and even regarding having my head shaved, I joked to the doctor who was shaving it to "not take much" and he said something to the effect of, "Not with Dr. Brackmann! He likes a good clean area to work with"  :D

(Dr. B also sent me home from a very difficult situation as a H-B 1, never even any temporary paralysis, and I get lots of compliments on my combover -- you totally can't tell what's underneath! -- so I'm thrilled with him. But I am doubtful that you're going to find him in favor of a teeny skull opening!  ;D )

I say, no point asking a Ford dealer why you should buy a Honda. Or vice versa!

Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

sharonov

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #23 on: July 13, 2009, 01:05:38 pm »
Great analogy--except, when my husband was facing prostate surgery the guy who had been doing open cuts for 30 years spoke highly of the robotic (DaVinci) and the guy at Rush who does them.  He admitted, "I do an excellent job on what I know.  I just don't know and haven't been trained on the DaVinci."

I e-mailed my neurosurgeon here, James Chandler, who just happens to be one of the organizers of the upcoming symposium.  He said that, though he is the only one at Northwestern who's trained in endoscopy, it wouldn't be appropriate in my cast (???).  I have an appointment to see him the week before the symposium and will ask him what he means.  I also want to find out why he talked only about de-bulking the tumor rather than removing it completely as Dr. House advises.   

Sharon

ppearl214

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Re: Arghh! Arghhh!!!!! My Decision has been crucified!
« Reply #24 on: July 13, 2009, 01:17:57 pm »
Sharon

I have to commend ANY doc that says "I don't know" and at least he was honest with you.

Debulking is usually done (actually, there is talk of this being the "new" standard of AN surgeries but hoping at the ANA symposium, we can learn more about it)..... as AN's tend to be "sticky". If they debulk (hollow out) the AN, there is less chance of damage to the nerve... then, if needed, they may recommend radio-treatment for the remainder of the growth.

Jim Scott is da man when it comes to debulk/radiation and you can check his past posts where he has discussed in length.

hope this helps.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"