Author Topic: Statistics on HEI and Houston surgical teams  (Read 7429 times)

LizAN

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Statistics on HEI and Houston surgical teams
« on: May 13, 2012, 11:11:47 am »
I'm in the process of choosing a surgical team.  I just read the ANA survey from 2008, which was not particularly encouraging, but it includes docs from across the country.  On Friday night, Dr. Slattery told me that with translab at House, there is only about a 3% chance of any kind of long term facial nerve problem.  Can I trust that number?  Has anyone seen any actual studies?  When I asked him for stats on the various doctors at House, he said they were all roughly the same.

I live in central Texas, and keep having a nagging feeling I should consider having surgery in Houston.  Maybe I would get home sooner, my family could possibly come visit, and it would be easier on my partner to help me through this.  Anyone know where I can find outcome stats for the best surgical teams in Houston?

My lip curled earlier this week.  My eye started twitching a couple of days ago, and a few minutes ago, my face started going numb.  I only have a 1.2 cm tumor.  Maybe I have an usually small IAC?  Dr. Slattery thought it would be a bad idea for me to wait another year to have this surgery.  With escalating symptoms, it is feeling more urgent to me by the day.  I WISH I were imagining this.  It's scary and I am trying not to panic.  I need to finish my research, choose a surgical team, and set a date.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

leapyrtwins

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Re: Statistics on HEI and Houston surgical teams
« Reply #1 on: May 13, 2012, 12:45:37 pm »
Liz -

something to keep in mind.  Docs can't guarantee you anything - especially when it comes to your particular outcome.

So, while statistics are great guidelines, they become a mute point when you are part of them.

In other words, no one can say for sure if you'll be part of the 3% that HEI is quoting you.

Just food for thought,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

LizAN

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Re: Statistics on HEI and Houston surgical teams
« Reply #2 on: May 13, 2012, 12:51:37 pm »
Liz -

something to keep in mind.  Docs can't guarantee you anything - especially when it comes to your particular outcome.

So, while statistics are great guidelines, they become a mute point when you are part of them.

In other words, no one can say for sure if you'll be part of the 3% that HEI is quoting you.

Just food for thought,

Jan

Jan,

I truly hear what you are saying.  After all, only 1 in 100,000 people get an AN in the first place.  It's impossible to say at this point whether I would be part of the 97% or the 3%, although with facial symptoms rapidly developing, I suspect my odds are not as good.  I was just wondering whether that 3% is accurate, for the doctors at HEI.  I'm also wondering whether that statistic applies to ALL of the docs there, or some have better outcome stats than others.

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

lrobie

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Re: Statistics on HEI and Houston surgical teams
« Reply #3 on: May 13, 2012, 05:04:49 pm »
Hi Liz,

I also have seen an increase in my symptoms lately.  My eye twitches quite a but, I have a twitch that is along my jawline, back by my ear and I also have tingling on my face and tongue.  My AN side eye bothers me a lot.  I wear contacts and I always feel like I have something bothering my contacts.  This is all in addition to increased dizziness and tinnitus.  My tumor is in the IAC.  I believe because it has pretty much filled the area of the IAC, the AN is putting pressure on those nerves and causing the additional/worsening of symptoms.  I'm just living with them and hoping they don't get too much worse before surgery on July 18th.

As far as percentages with facial nerve outcomes at HEI, I've tried to read a lot of the messages from patients who have had their surguries there.  I have only found one man who had temporary facial paralysis for a few months.  However, that's just what I have read here, so I can't be for sure.  I hear so much good stuff and outcomes from HEI, I hesitate to go anywhere else.  If it would be helpful for you to read them, you can click on the person who went to HEI and then click on to read their posts.  Most give updates as they go through the surgery and their recovery process.  Some also have blogs.

Like Jan said, you can't really go with what the statistics are as you don't know which side you will fall on.  There are no guarantees, but I hope and pray that I fall on the positive side of them.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LakeErie

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Re: Statistics on HEI and Houston surgical teams
« Reply #4 on: May 13, 2012, 05:39:36 pm »
If I can offer some perspective on stats, it would be that it is difficult to generalize from them to yourself as an individual. If your consult surgeon said 3% then take him at his word that he feels those are YOUR odds. In my case, as an example, the surgeon felt the odds of full facial paralysis for me was 10% even though his paralysis rate as a surgical complication was lower. The reason for that was the size of my tumor and the estimated time it had been growing. The surgeon estimated my facial nerve had been compressed and stretched to a very narrow width making dissection of the tumor from the nerve riskier than dissecting from a less stretched nerve. During surgery the tumor capsule was " friable " meaning it crumbled when dissected making surgery more difficult. There was no way to predict this problem, so it changed my odds of complications, too.
It turned out I was House-Brackmann grade 2 post surgery and recovered to Grade 1 in 10 days.
My approach pre-surgery was to believe  that the best AN surgical outcomes are from the most experienced surgeons. I picked the doctor I thought gave me the best chance for the best possible outcome in terms of his experience and what he recommended to me. Whether I would fall into one statistical category or not was impossible to predict. I could just try to make the best decision pre-op so I would not have to second guess myself post-op  regardless of the outcome. Good luck
« Last Edit: May 13, 2012, 05:45:36 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

LizAN

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Re: Statistics on HEI and Houston surgical teams
« Reply #5 on: May 13, 2012, 05:59:38 pm »
Hi Liz,

I also have seen an increase in my symptoms lately.  My eye twitches quite a but, I have a twitch that is along my jawline, back by my ear and I also have tingling on my face and tongue.  My AN side eye bothers me a lot.  I wear contacts and I always feel like I have something bothering my contacts.  This is all in addition to increased dizziness and tinnitus.  My tumor is in the IAC.  I believe because it has pretty much filled the area of the IAC, the AN is putting pressure on those nerves and causing the additional/worsening of symptoms.  I'm just living with them and hoping they don't get too much worse before surgery on July 18th.

As far as percentages with facial nerve outcomes at HEI, I've tried to read a lot of the messages from patients who have had their surguries there.  I have only found one man who had temporary facial paralysis for a few months.  However, that's just what I have read here, so I can't be for sure.  I hear so much good stuff and outcomes from HEI, I hesitate to go anywhere else.  If it would be helpful for you to read them, you can click on the person who went to HEI and then click on to read their posts.  Most give updates as they go through the surgery and their recovery process.  Some also have blogs.

Like Jan said, you can't really go with what the statistics are as you don't know which side you will fall on.  There are no guarantees, but I hope and pray that I fall on the positive side of them.

Lisa

Hi, Lisa,

Sorry to hear your symptoms are increasing.  We seem to be having parallel AN experiences.

Where do you live?  Will you be flying to and from LA?

I was hoping to find something relatively objective, vs. just what outcomes I've seen from HEI on this forum (which are very good).  It would be so much cheaper and I would be home quicker, if I had the surgery in Houston, as opposed to LA.  It would be easier on my family, too, for my partner and I not to be gone for two weeks.  We will have to farm out the kids and find someone to take care of all the animals, including 6 horses, two dogs, and three cats.

Best of luck, Lisa.  I will be following your progress.  We may even end up at HEI at the same time.  What was your lead time to schedule with Friedman/Scwartz?

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

LizAN

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Re: Statistics on HEI and Houston surgical teams
« Reply #6 on: May 13, 2012, 06:13:30 pm »
If I can offer some perspective on stats, it would be that it is difficult to generalize from them to yourself as an individual. If your consult surgeon said 3% then take him at his word that he feels those are YOUR odds. In my case, as an example, the surgeon felt the odds of full facial paralysis for me was 10% even though his paralysis rate as a surgical complication was lower. The reason for that was the size of my tumor and the estimated time it had been growing. The surgeon estimated my facial nerve had been compressed and stretched to a very narrow width making dissection of the tumor from the nerve riskier than dissecting from a less stretched nerve. During surgery the tumor capsule was " friable " meaning it crumbled when dissected making surgery more difficult. There was no way to predict this problem, so it changed my odds of complications, too.
It turned out I was House-Brackmann grade 2 post surgery and recovered to Grade 1 in 10 days.
My approach pre-surgery was to believe  that the best AN surgical outcomes are from the most experienced surgeons. I picked the doctor I thought gave me the best chance for the best possible outcome in terms of his experience and what he recommended to me. Whether I would fall into one statistical category or not was impossible to predict. I could just try to make the best decision pre-op so I would not have to second guess myself post-op  regardless of the outcome. Good luck

Sounds like your surgeon did a great job with your large tumor, against the odds that he quoted you!

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

lrobie

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Re: Statistics on HEI and Houston surgical teams
« Reply #7 on: May 14, 2012, 05:53:57 am »
Liz,

I live in Erie, PA.  We will be taking Amtrak to LA.  It will be a 2 1/2 day trip, but we are actually looking forward to the train.  We will fly back.  We are going to stay in a hotel and rent a car.  I'm looking for a Residence Inn type hotel so that we have a kitchen in the room.  There are some that have two bedrooms.  This is going to cost us around $10,000.  It's hard to think about spending that much, but I want to have the best team treating me.  We are taking our 11 3/4 year old son with us.  He is an only child, very mature and has gone everywhere with us.  Plus, he'll be able to help his dad with keeping everyone updated using today's technology.   :)  I will only need someone to feed our cat and hamster.  No horses in our subdivision.   ;D

I could have scheduled the surgery much sooner, but I wanted to wait for the school year to end and was also coordinating with having sleeping cars on the train.  Thus, not scheduling until July 18th. 

Good luck with making your decision.  I know how hard it can be.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LizAN

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Re: Statistics on HEI and Houston surgical teams
« Reply #8 on: May 14, 2012, 09:05:28 am »
Liz,

I live in Erie, PA.  We will be taking Amtrak to LA.  It will be a 2 1/2 day trip, but we are actually looking forward to the train.  We will fly back.  We are going to stay in a hotel and rent a car.  I'm looking for a Residence Inn type hotel so that we have a kitchen in the room.  There are some that have two bedrooms.  This is going to cost us around $10,000.  It's hard to think about spending that much, but I want to have the best team treating me.  We are taking our 11 3/4 year old son with us.  He is an only child, very mature and has gone everywhere with us.  Plus, he'll be able to help his dad with keeping everyone updated using today's technology.   :)  I will only need someone to feed our cat and hamster.  No horses in our subdivision.   ;D

I could have scheduled the surgery much sooner, but I wanted to wait for the school year to end and was also coordinating with having sleeping cars on the train.  Thus, not scheduling until July 18th. 

Good luck with making your decision.  I know how hard it can be.

Lisa

Thanks, Lisa.  You are right - it is a tough decision.

The kitchen facilities at Seton are communal?  I sent them email and am waiting to hear back about costs, etc.  I should also be talking with the people who handle scheduling and insurance this week.

Liz 
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

geexploitation

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Re: Statistics on HEI and Houston surgical teams
« Reply #9 on: May 14, 2012, 11:16:21 am »
Liz--

I don't think you will find the statistics you seek. (But I would be happy to be proven wrong, and would love to know about it if so.) I have been looking for the same thing for a while now. I have a public health background and know a bit about the way statistical studies get constructed, and AN surgery isn't easy to draw statistical conclusions from. The main reasons for this seem to be two interrelated things:

1) AN surgery outcomes are influenced by a fantastic number of variables (size of tumor, location, personal anatomy, surgical skill, experience, acts of god), many of which we really don't understand, and

2) ANs are rare, so the raw number of "data points" is pretty low.

These problems compound each other. A small number of ANs to start, then a smaller number that are in location X, and an even smaller number in people with your set of symptoms, and so on... pretty soon you're talking about only a few thousand people "like you" on which we could base a medical study... than reduce that number to those who go to a particular surgical center, or a particular surgeon, and the numbers are so small that you can't really trust them statistically.

So, what I've decided is best for me personally, is to look at the overall statistics for AN surgeries and use them to plan/prepare and ask questions... but in choosing a surgeon, I'm going with experience and qualitative recommendations as my influencing factors.

And on House/local options... it sounds to me that you can get good care locally -- just choose someone experienced.

Feel free to PM me with questions, and good luck.
=========================
41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

LizAN

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Re: Statistics on HEI and Houston surgical teams
« Reply #10 on: May 14, 2012, 11:27:14 am »
Liz--

I don't think you will find the statistics you seek. (But I would be happy to be proven wrong, and would love to know about it if so.) I have been looking for the same thing for a while now. I have a public health background and know a bit about the way statistical studies get constructed, and AN surgery isn't easy to draw statistical conclusions from. The main reasons for this seem to be two interrelated things:

1) AN surgery outcomes are influenced by a fantastic number of variables (size of tumor, location, personal anatomy, surgical skill, experience, acts of god), many of which we really don't understand, and

2) ANs are rare, so the raw number of "data points" is pretty low.

These problems compound each other. A small number of ANs to start, then a smaller number that are in location X, and an even smaller number in people with your set of symptoms, and so on... pretty soon you're talking about only a few thousand people "like you" on which we could base a medical study... than reduce that number to those who go to a particular surgical center, or a particular surgeon, and the numbers are so small that you can't really trust them statistically.

So, what I've decided is best for me personally, is to look at the overall statistics for AN surgeries and use them to plan/prepare and ask questions... but in choosing a surgeon, I'm going with experience and qualitative recommendations as my influencing factors.

And on House/local options... it sounds to me that you can get good care locally -- just choose someone experienced.

Feel free to PM me with questions, and good luck.

geexploitation,

Your analysis makes a lot of sense.

As for "qualitative recommendations,"  I have only heard from a couple of people who have had Dr. Slattery, who is the HEI doc that has been doing my phone consulations, reviewing my periodic MRIs.  I like him okay.  He answers my questions and encouraged me to set up additional phone calls, should I have further questions.  I have heard a LOT from people who had the Friedman/Schwartz team.

Why is it that so many on this forum have chosen that particular team, as opposed to the many other possibilities at HEI?

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

Pooter

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Re: Statistics on HEI and Houston surgical teams
« Reply #11 on: May 14, 2012, 03:29:34 pm »
Liz,

I can vouch for the statistics of anyone in particular, however I can't say enough good things about my Houston surgical team (Vrabek and Trask) with Baylor College of Medicine.  Dr. Vrabec is top notch, very caring, and was even very attentive not only to me but also to my family when they were there.  Every follow-up appointment I had with him was great.  I didn't feel rushed.  At one of them, he even let me borrow a test band BAHA unit.  Please PM me with specific questions you have or if you want to talk on the phone about my experience.

My experience is documented on a website (in my signature) if you're up for a long read.

Good luck with your decision.

Regards,

Pooter...

PS  Hi all!  Just past 4 years!  :)
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

leapyrtwins

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Re: Statistics on HEI and Houston surgical teams
« Reply #12 on: May 14, 2012, 07:06:56 pm »
If I can offer some perspective on stats, it would be that it is difficult to generalize from them to yourself as an individual.

Precisely my point.

Jan

PS - Hi, Pooter.  Good to see you here!  ;D
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

LizAN

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Re: Statistics on HEI and Houston surgical teams
« Reply #13 on: May 14, 2012, 08:19:49 pm »
Liz,

I can vouch for the statistics of anyone in particular, however I can't say enough good things about my Houston surgical team (Vrabek and Trask) with Baylor College of Medicine.  Dr. Vrabec is top notch, very caring, and was even very attentive not only to me but also to my family when they were there.  Every follow-up appointment I had with him was great.  I didn't feel rushed.  At one of them, he even let me borrow a test band BAHA unit.  Please PM me with specific questions you have or if you want to talk on the phone about my experience.

My experience is documented on a website (in my signature) if you're up for a long read.

Good luck with your decision.

Regards,

Pooter...

PS  Hi all!  Just past 4 years!  :)

Thanks, Pooter!

I may take you up on that!  I will definitely take a look at your website.

Right now, my specific questions are things like how long I would have to stay in Houston, which you might not be able to answer, since you live there.  I did find out that Vrabec and Trask are on my insurance, which is excellent news.

Congrats on being a four-year postie!

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

Pooter

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Re: Statistics on HEI and Houston surgical teams
« Reply #14 on: May 16, 2012, 12:22:03 pm »
Liz,

About staying in Houston.. I think you can reasonably expect a 3-5 day stay in the hospital following surgery.  After that, you can likely go home, however you'll have several follow up appointments with Dr. Vrabec afterwards that will require that you come to Houston at least for the day.

His office is in the Medical Center area of town, and they have deals setup with hotels within walking distance of the hospital specifically for family members of people staying in the hospital.  I'd suggest that any family members staying in town with you check that out.  There are also many hotels within a 10 minute drive of the hospital.

Hope this helps.

Pooter...

PS  Hi Jan!  Long time, no talk!  Congrats on the new job!  :)
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

 


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