Author Topic: I just found out. :-(  (Read 21674 times)

MAlegant

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Re: I just found out. :-(
« Reply #30 on: September 15, 2008, 04:59:25 pm »
Hi and welcome,
Sorry you have to be one of us, but we're happy to have the company and to help. My AN was not a candidate for anything but surgery so that's what I did. (I would have jumped at CK or GK).  Doing just fine now and went back to work full-time today.

The weeks between dx and surgery were very difficult--couldn't eat, sleep, same as you.  I took Zanax on and off during that time and it got me through pretty well. That and this forum, that is!

Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wcrimi

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Re: I just found out. :-(
« Reply #31 on: September 15, 2008, 06:24:05 pm »
Thanks for the further info.

Tomorrow is my first consultation with Dr. Kalmon Post at Mt Sanai as recommended by my ENT.

I have my second consultation narrowed down to one of two teams. (Galfinos/Roland and a team at Sloan Kettering). I want to do a little more research and talk to my ENT again after the consultation before deciding which team to see next.  Wish me luck.     
« Last Edit: September 15, 2008, 06:26:52 pm by wcrimi »
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: I just found out. :-(
« Reply #32 on: September 15, 2008, 06:24:54 pm »
MAlegant,

Did you retain any hearing in that ear?

Wayne
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

MAlegant

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Re: I just found out. :-(
« Reply #33 on: September 15, 2008, 09:35:46 pm »
Wayne,
I retained virtually all of my hearing.  Will know for sure after a test on October 7, but I don't think I lost very much. If I did, it's not bothering me too much but I'm a musician (not practicing now) so it may have an affect once I start singing again. Fortunately that is no longer my day job!
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wcrimi

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Re: I just found out. :-(
« Reply #34 on: September 16, 2008, 06:14:52 pm »
Dr Kalmon Post at Mt Sanai seems to prefer the surgery option, but admitted he is biased. He has done 500 of these operations (2 yesterday).  He claims a 99% success rate and suggested that given the size of my tumor, the chances of keeping my hearing are between 65% and 80%.He told me that typically it is all or nothing regarding keeping hearing.  He thinks any other synptoms are very likely to not be a problem long term. I'm going to take a BAER Audiogram (srt/disc/pta). After that test, he'll be able to give me a better estimate.

He was not against radiation, but pointed out that there is little data beyond 20 years.

I'm going to start making a decision on who to see for my second opinion tomorrow. I think Dr. Golfinos looks like a good option because I believe his team does both surgery and radiation. So I may be able to get a more neutral opinion.

All in all, I was very satisfied that if I choose surgery and Dr Post does it I will be in very good hands. 

Oh yea, insurance will not be a problem.  One of the other doctors on the team is an Aetna doctor. So everything will be done through his name. yipee
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: I just found out. :-(
« Reply #35 on: September 16, 2008, 06:27:25 pm »
One other thing that Dr Post said was that if I choose the radiation route, another team that works for him will do it. They do not use the Gamma Knife. They use Novalis BrainLAB.   He said it's mostly a brand difference.  Any ever hear of this or have it used on them?
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

sgerrard

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Re: I just found out. :-(
« Reply #36 on: September 17, 2008, 09:19:10 am »
One other thing that Dr Post said was that if I choose the radiation route, another team that works for him will do it. They do not use the Gamma Knife. They use Novalis BrainLAB.   He said it's mostly a brand difference.  Any ever hear of this or have it used on them?

I have heard of Novalis, and more recently about the BrainLab upgrade to it. It is still a different system from GammaKnife, but the improvements do put it in the same class for precision, if not exactly equal. It seems to me a reasonable way to do radiation treatment, although I would still pick CyberKnife or GammaKnife over it if I had the choice.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

wcrimi

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Re: I just found out. :-(
« Reply #37 on: September 17, 2008, 03:35:43 pm »
Did anyone ever hear of a BAER Audiogram test?

I am having a nightmare with insurance issues with Aetna HMO.

I am trying to get a referral from my GP to another ENT that performs that test. The idea to take that test comes from Dr Kalmon Post who is not in my insurance plan, but gave me the name of a Dr that performs the test. My GP is hesitant to do a referral to another ENT for a test he knows nothing about.

Supposedly, this test will allow Dr. Kalmon Post to better guage the chances of me retaining any hearing after surgery if I elect that route. Knowing the probability might make the decision a little easier. 

The other problem is that I don't even know if this test is on the approved list of tests for my plan. So I don't know if it is covered.

If anyone has any idea at all about any aspect of this or can make a suggestion, I would appreciate it.







 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

MAlegant

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Re: I just found out. :-(
« Reply #38 on: September 17, 2008, 05:16:06 pm »
Hi again,
I would just add that until the surgeon's are actually in there, they make no guarantees.  They knew my tumor was not invading the auditory canal and said they thought they could save my hearing but still no guarantees.  Surgery was really my only option.  My tumor was not small, so I figured as long as I came out alive, I would do my best to deal with whatever side effects I was left with.  As a musician my hearing is especially dear to me but I was willing to sacrifice it if that's what it took.  Like many of, us, I feel my doctors were superb and so was the standard of care I received at University Hospitals.  I had two surgeons, for whom this type of tumor was their specialty, who also have done so many of these surgeries.

It sounds as if you have been very fortunate in finding doctors that you like and in the decision making process.  Regarding BrainLab, someone on this site has spoken of it before so if you just search for it you may get more information.  Again, no matter what you choose, experience and success rate in your doctors is paramount.

Good luck with all,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

sgerrard

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Re: I just found out. :-(
« Reply #39 on: September 17, 2008, 10:49:59 pm »
Did anyone ever hear of a BAER Audiogram test?

As everyone knows, BAER stands for brainstem auditory evoked response. Google is your friend. :)

http://www.dizziness-and-balance.com/testing/baer.htm

The value of the test is that it can demonstrate whether the nerve itself is in good shape. If it is, the hearing loss you have is more likely due to damage to the cochlea, perhaps from having its blood supply hijacked by the AN. In that case, saving the nerve may preserve remaining hearing. If the nerve does not show a good response pattern, it is probably damaged, and complete hearing loss on the affected side is more likely. Or something like that.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

wcrimi

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Re: I just found out. :-(
« Reply #40 on: September 18, 2008, 06:17:46 am »
Steve,

At this point I have no hearing loss. I tested normal hearing on both sides. In fact, the side with the tumor actually tested slightly better. The only symptom I have is slight tinnitus in the bad ear.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

FlyersFan68

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Re: I just found out. :-(
« Reply #41 on: September 18, 2008, 12:22:44 pm »
I wanted to comment about the beyond 20 years of data regarding radiation. Surgeons take a lot of heat for this one but in a way they are correct. The longest running machine is the gamma knife first used in the very late 60's. All during the 70's and 80's it was used exclusively for the elderly. These people are simply not around anymore for follow-up data. Also, during these decades the results weren't very good because the doses were way too high. It wasn't until the early to mid nineties that the gamma knife was used more on the younger and the number of young patients was still small but certainly growing. I waould say that we have a strong 15 years of study but this isn't quite long-term yet for the young person where life expectancy could be 30, 40 or even 50 years out. What people consider young is an entirely different topic.  :)

As far as surgery it does seem like you'll be in good hands but you do have perfect hearing right now. The odds seem good that you would keep your hearing with surgery or radiation. As the previous post mentioned they really won't know until they get in there if you decide on surgery. You're likely gonna need treatment at one point but waiting and watching is also a very good option. When the tumor is small with little damage there are many options not to mention figuring out all the various radiation machines. We can all relate to the emotional impact this can have on people and just wanted to welcome you and hope everything turns out okay.

wcrimi

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Re: I just found out. :-(
« Reply #42 on: September 21, 2008, 11:15:03 am »
I have set up a second consultation. This time with DR. Galfinos on 9/29. I hope to get a more balanced view about radiation vs. surgery and some more estimates about the chances of keeping some or all of my hearing either way.   I am also getting a BAER Audiogram on 10/1. Dr Post told me that would help with his estimation of the chances.

I still have higher levels of anxiety and feel mildly depressed, but I'm eating and sleeping better. 

To be honest, some of the biggest stress somes from dealing with doctors and insurance companies for referrals etc... ::)

Thanks for all the support.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: I just found out. :-(
« Reply #43 on: September 29, 2008, 03:38:47 pm »
I saw Dr. Galfinos today and was pleased with the consultation.  He described the surgical procedure and laid out the pluses and minuses relative to gamma knife.

Unfortunately, I forgot to ask him a question about the surgical technique that maybe someone else can answer.  He said they basically cut the nerve related to balance (where the tumor is) and take it out of the equation. Then the nerve on the other side takes ove the balance issuesr.

Does every surgeon do the same exact thing?

For some reason I was under the impression that they just cut out the tumor and if there were any balance issues the other side took over, but the nerve stayed. Anyone?


 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Sue

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Re: I just found out. :-(
« Reply #44 on: September 29, 2008, 04:08:26 pm »
Hi Wcriml,

Just wanted to pop in here and say that I hope everything is going okay for you and that you are getting all of your questions answered okay.  I also wanted to say that you are one of the lucky ones to have had your diagnoses so fast from your ENT.  I presented with more symptoms than you had, but never got an MRI until the next YEAR.  So it took almost a year for them to figure out what I had.  My AN is bigger (ooo, just felt like a kid again.  My AN is bigger, ha ha ha  ;D) and my symptoms appear to be sticking with me, probably forever! Bummer. 

I also sympathize with your anxiety and depression after learning about something you probably never have even heard of before.  I liken it to the Road Runner cartoons.  If you remember seeing those at all....Wile E. Coyote would look both ways down a long, long railroad track with nothing in sight for a hundred miles each way, until he stepped out onto the track and then BAM, that old train would nail him and he would be on the front of the train, spread eagle, with a wild look in his eyes.  I thought of that, and thought, there I am -  spread Eagled on the front of a train, traveling 100 miles an hour with me wild-eyed and panic stricken.  I think we all feel that way after our doctor tells us we have something in our heads that shouldn't oughta be there.   

Just letting you know that I fully understand.  Hang in there!

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


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