Author Topic: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)  (Read 18928 times)

Kaybo

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #15 on: January 30, 2009, 08:26:09 am »
Still really curious about size and this procedure...anyone know??  Lisa, where are you??
 ???

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

LisaA

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #16 on: January 30, 2009, 09:34:55 am »
Hi Kaybo,

I'm here, just a little bewildered...

When you posted your question the other day, I wrote to Dr. Fukushima's office.  There've been so many comments about needing to be "realistic" that I had to ask whether I was an exceptional case for him. 

What they said was that "the size of the tumor matters with his percentage of hearing preservation, but your outcome is typical of Dr. Fukushima’s surgeries.  Location or surrounding nerves can play into the result, but with his skill these are just minor issues.  The skill of the surgeon is everything."

I'm available at ANY TIME for people who have questions or just want to talk to me - feel free to e-mail or private message me.  If you'd like we can exchange phone numbers and chat about it.

Diagnosed 7/31/08
10mm x 5mm on Right Side
Surgery w/ Dr. Fukushima 9/26
No Surgery-related Hearing Loss
No Facial Paralysis
No Balance Issues (after about the 2nd - 3rd week post op)

GRACE1

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #17 on: January 30, 2009, 10:36:28 am »
Lisa,

I am so glad you had such a great outcome to your surgery.  I  had GK, but I can only imagine how scary the prospect of surgery would be to a newbie.  Your post would give anyone reading it a lot of hope and comfort.  Your enthusiasm is refreshing.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Tisha

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #18 on: January 30, 2009, 10:44:47 am »
When I was diagnosed with my AN (1.7 x 1.1) my local neurotologist told me that I would almost have 100% hearing loss with surgery.  It seems that from almost everyone else's posts that I've read, or articles that I've read...this does seem to be the case.  So, to me, an 85% saving hearing preservation rate sounds like a big thumbs up to me. 

However, I wonder what this doctor does that is different from other docs that his hearing preservation rates are so high.  When he quoted you this statistic, did they include all AN surgeries, no matter the size?  Or perhaps the 85% hearing preservation rate doesn't encompass only the level 1 and 2, but any hearing left at all?  I'm not discounting that this is a wonderful doctor, but I guess it wouldn't surprise me if that particular statistic might be skewed a bit.  Did he have any published studies or anything?  I'm really not trying to be devils advocate, and I'm not dismissing the fact that he's a tremendous doctor and I would go seek his opinion, I just would want to  know a bit more.

Tisha

1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

LisaA

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #19 on: January 30, 2009, 10:59:58 am »
Hi Tisha,

That's a good question, and I'm not completely sure, but It's my understanding that the 85% statistic is across the 1200 AN surgeries performed.  Dr. Fukushima has invented many of the instruments he uses and I think this plays a part in his success - he explained this to me a little bit in my consulation, but I no longer remember the details.  I think I have a recording of the consultation somewhere.  I do recall him mentioning at one point that many surgeons use a drill-type instrument when opening the ear canal to reach the tumor - the instrument he uses is not a drill and is much safer.  I don't recall if he invented that one or not, but many of the other instruments he uses are of his own design.

I'll see if I can dig up that tape.

I've never heard the 100% hearing loss statistic except in relation to a Translab.  For Middle Fossa and Retrosigmoid - typically I've heard 50%-60%.    I was also told by one of the other surgeons I consulted with that a good ABR result (Auditory Brainstem Response) is good news in terms of hearing preservation. 
« Last Edit: January 30, 2009, 11:10:08 am by LisaA »
Diagnosed 7/31/08
10mm x 5mm on Right Side
Surgery w/ Dr. Fukushima 9/26
No Surgery-related Hearing Loss
No Facial Paralysis
No Balance Issues (after about the 2nd - 3rd week post op)

Kaybo

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #20 on: January 30, 2009, 12:24:42 pm »
LisaA~
Thanks for your reply.  So ANY size tumor - even the giant ones - can be removed this way.  I guess that I really don't understand the procedure...I went on the web-site, but I just saw stuff about him.

I have also only heard the 100% hearing loss for the translab. approach...

Thanks again!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Pooter

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #21 on: January 30, 2009, 12:36:52 pm »
Just as an aside, I was told that even with having my retro surgery, there was about a 10% chance of having useable hearing after surgery because of the LOCATION of the tumor.  They're wrong that skill of the surgeon is "everything".  It's only part of the equation, in my opinion.

Again, great outcome, hearing preservation, etc..  All great news and I'm thrilled for you.  I'm guessing that there are many factors that went into that outcome and that only part of it was surgeon's skill.  Just a hunch.

Regards,
Brian
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

Tisha

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #22 on: January 30, 2009, 12:56:15 pm »
Lisa,

I find it fascinating that this doctor has invented some of his own surgical tools.  As far as surgeon's skill goes...perhaps this doctor does have an edge on other wonderful doctors because of his methods that he uses to open the skull.  Perhaps his surgeon's skill is more than most for his successful outcome.  This isn't to say that other's don't have wonderful doctors, but if this particular surgeon is discovering new ways to do surgeries AND his outcomes seem to be higher than the average great surgeon...why discount that?  He just may be on to something...sort of like new endoscopic surgeries with less downtime.  There's always room for improvement with AN treatments.  I'm just saying that perhaps Lisa is right.  Maybe her doctor has invented something that raises the statistics with AN removals. 

As far as hearing loss, I know I haven't paid as much attention to the stats as those who have had surgery.  I just know my Neurotologist said 100%, and it seems that almost everyone that I read about on this board says, "I did lose my hearing".  I'm sure there are thousands that never frequents this board that have the other approaches that have retained theirs, so I speak from just what I've been told and other's experiences on this board.  Sorry if I mislead anyone.

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Pooter

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #23 on: January 30, 2009, 02:30:36 pm »
Tisha,

We don't discount LisaA doctor, results, etc..  What we take issue with is the appearance that if you're looking into surgery that her doctor is the ONLY person to talk to and that you'd be a fool if you choose anyone else because of his wonderful (statistically based) outcomes.

Like you, I'm sure there are many that have hearing preservation (obviously LisaA is one of them) but I believe that there are others on this board.  It depends on how one defines "hearing preservation".  At least one member kept SOME hearing, but needed a hearing aid for it to be actually useable.  Others may have had some hearing preserved, or even the hearing nerve itself preserved, but in order to actually USE it they needed a hearing aid..  Technically, it's "preserved" but in reality it's not.

My guess is that either her doctor is very selective about who he does surgery on (thereby inflating the preservation stats) or through creative marketing it's called "preserved" if ANYTHING is left whether or not it's actually useful to someone or not or if it requires a hearing aid to be useful.

If he's truly onto some sort of technique or tool or something that increases the positive successes of his patients, then I find it hard to believe that others wouldn't find out about what they are and start to incorporate them into their own practices.  I'm with you, and everyone else, that improvements to treatments should, and will, be made over time.  It will be someone like, possibly, LisaA's doctor who find a new technique or tool to help make it better.

I'm quite certain LisaA's doctor is a wonderful surgeon and person, and who can argue with the success of LisaA's surgery as a testimate to his skill.  Our entire point is that while he's skilled and nice and all that, his skill is only part of the equation in this for someone else.  If he could get those results 100% of the time no matter the size, no matter the location, etc.. THEN I would agree he's the end-all, be-all of AN surgeries.  But, the reality is that he doesn't and nobody does.  BECAUSE surgeon skill is only PART of the equation.

Look at it this way..  Debbi has longer term facial weakness than I do.  My surgery was 1 week AFTER hers.  Is her doctor less skilled than mine?  I don't think so.  Her tumor location probably had something to do with it.  (Sorry, Debbi)

Hopefully, that makes sense to everyone reading..

Regards,
Brian
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

Dog Lover

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #24 on: January 30, 2009, 05:37:46 pm »
Quote
At least one member kept SOME hearing, but needed a hearing aid for it to be actually useable.  Others may have had some hearing preserved, or even the hearing nerve itself preserved, but in order to actually USE it they needed a hearing aid.. 

My hearing was preserved and I don't use a hearing aid. Granted, I DO have a hearing loss (I did BEFORE the surgery) but I can still hear out of it - even on the phone - just not as good and a little tinny. Doc said that a lot of people with my level of hearing loss do just fine without a hearing aid, but if I decided to persue that, I was a good candidate.  ;D

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Pooter

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #25 on: January 30, 2009, 06:07:13 pm »
Point well taken.  You have hearing preservations yet you have hearing loss.  Interesting conundrum..  Would you be counted as "preservation" or a "loss" person..  ;)

And, that begs the question of how much hearing has to be lost in order to be considered a "hearing loss" statistic?

Ahh, the wonderful world of ANs...

Regards,
Brian
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

Keeping Up

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #26 on: January 30, 2009, 08:38:18 pm »
You have hearing preservations yet you have hearing loss.  Interesting conundrum..  Would you be counted as "preservation" or a "loss" person..  ;)

And, that begs the question of how much hearing has to be lost in order to be considered a "hearing loss" statistic?


See, as a newbie and watch & waiter, this is where I spend my time.

As a newbie, I have been seriously challenged by the mysterious inconsistency of research around acoustic neuromas.  While I will spare you all the details that confuse me, I will address this one from my perspective and my range of limited research.  I would appreciate any guidance offered on understanding this stuff!

I did google this physician - and he published a research paper about ANs and hearing preservations in 1997.  I admit a long time ago - but it is all I could find.  It also only addressed a small population of ANs - about 60 where either the middle fossa or retrosigmoid was done - the 'hearing preservation' surgeries.  So, while the 1200 is thrown around - and don't doubt the doctor has done that many (or many more) - this study by this physican had a small population.  I will put the link to the 'summary' below.

Here is a short piece, relevant to this discussion of that study.

Quote
This report reviews acoustic neuroma outcomes of individualizing the surgical approach to patient and tumor characteristics. This study reviews 60 consecutive hearing preservation acoustic neuroma surgeries in a total series of 330 acoustic neuromas. Tumor sizes ranged from 0.3 to 4 cm in patients ranging from 23 to 74 years of age. Middle fossa surgery was performed in 57%, retrosigmoid in 43%. Overall, measurable hearing was preserved in 77%, and useful hearing in 67%. Among middle fossa cases, 85% had measurable and 74% had useful hearing. Among retrosigmoid surgeries, 65% had measurable hearing and 58% had useful hearing.

I would assume (never a great thing) that the stats quote by Lisa are based on this study - 85% had MEASURABLE hearing.  This is an obviously different therm than useful hearing.  As I break down middle fossa:

15% - have no measureable hearing - in my words, if they stood beside a lawn mower at 90db, the wouldn't hear it.
11% - have 'measurable' but not useful hearing - that infers that they hear between 50db-90db (i.e. PTA) and understand between 5%-50% (discrimination) of words at that db.  (some lack of distinction because if your PTA is 55db but your discrimination is 85% you still have meaurable but not useful hearing ... still figuring that one out).  As a benchmark - 60db is 'normal conversation'.
74% have useful hearing - which divides into 2 categories the 0-30db and >70% discrimination and 30-50db and >50% discrimination.   It would be very useful to have more of a breakdown in that department but that isn't available in this piece (or in many other pieces either - alas one of my pet peeves).

Again, as many have mentioned, there are so many conditions that affect the ultimate outcome.  In broad strokes, I believe that middle fossa is principally (but not exclusively) for small ICA tumors which, in general, by defintion have superior hearing than the larger CPA tumors . 

So, I would suggest that dog lover (CAthy) and Lisa were part of the majority who maintained useful hearing, and more than likely based on their descriptions, easily fit in the Grade 1 class of <30db >70% discrimination - which is utterly awesome!!!

I have read a few House papers as well (again, only the summaries - so rather limiting) and their 'rates' are lower - but the one study I read had a much much larger patient population than this study.  And, while I was far from a star in my college stats course, would suggest that the 85% of measurable hearing versus I think about 68% at house is potentially statistically insignificant.  Just a guess - but when you have 57% x 60 patients (i.e. 34 patients) versus 151 patients, that stats will be more indicative at 151 patients.  I know there a few scientists on this board so challenge away at my stat assumption.

Someone else brought this up - it is my understanding that translab is focused towards ANs that are large and where hearing preservation isn't a goal (either because of poor hearing pre-op or a large tumor where hearing preservation isn't likely).  I have gandered that translab (and please correct if incorrect) that this is the least likely approach to have other complications - facial nerve, headaches etc. so if hearing preservation isn't part of the goal, this is the best approach.

I am a newbie with a small ICA tumor who is watching for now (gosh, I am getting impatient though - I don't think I will pass this watching crap!) so am learning a lot. 

I am also Cdn and not willing to foot the bill for a bit trip to a US doctor - so will be sticking to the Cdn scene.  I am not concerned that I won't find an excellent surgeon (if that becomes my choice) here whose rates are comparable to either Fukushima or House.

Fukushima - Research study:
http://www.biomedexperts.com/Abstract.bme/9261005/Individualizing_hearing_preservation_in_acoustic_neuroma_surgery

House - Reserach study - middle fossa:
http://cat.inist.fr/?aModele=afficheN&cpsidt=2820310



PS - because I just have to vent - what the heck is 'actuarial' assumption on radiosurgery - frig, I see no place in 5 year 'actuarial' tumor control rates  - if the technology has been around for 30 years, get REAL STATS PLEASE!!!!  Sorry - had to vent.
« Last Edit: January 30, 2009, 08:41:11 pm by Keeping Up »
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

Kaybo

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #27 on: January 30, 2009, 09:21:34 pm »
OK...I am blond and tired, but I am still confused (actually that is how I spend most of my life ;D).  I went back to reread LisaA's original post & I still don't know what approach was done.  Obviously it was NOT translab!!  But what was it???

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Keeping Up

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #28 on: January 30, 2009, 09:27:39 pm »
Middle Fossa - so higher up, brain retraction, bigger shave area (sorry I absorb details) - it is the 'primo' hearing preservation option, principally focused on IAC tumors - the small suckers.
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

Kaybo

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Re: A Patient's Positive perspective of Dr. Fukushima (By Lisa A)
« Reply #29 on: January 30, 2009, 09:31:38 pm »
THANK YOU!!  Where did I miss that??

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

 


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