Author Topic: Husband's surgery May 6th  (Read 10175 times)

Cindyswart

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Re: Husband's surgery May 6th
« Reply #15 on: May 25, 2011, 02:37:07 pm »
HI Clarice!! I am so happy to find you- Dr. Fukushima will be doing my surgery also- Can you tell me more about your post op?

Thannks so much! Cindy
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

CHD63

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Re: Husband's surgery May 6th
« Reply #16 on: May 25, 2011, 07:14:10 pm »
Cindy .....

Took a little time to read LisaA's glowing testimony of Dr. Fukushima's work.  Some of the posts on that thread need to be put into perspective in the total picture.

We, on this Forum, are not in the business of telling other AN patients where they should or need to go for treatment.  We share our experiences and then others must make their own decisions.  That being said, yes, Dr. Fukushima did my first AN surgery in February, 2008.  I had a great experience ..... Duke Raleigh Hospital is topnotch ..... Dr. Fukushima's office manager, Lori, is topnotch ..... and Dr. Fukushima is topnotch.  However, they are not the only act in the country.

Post-op I had no headaches, no facial issues, very minor nausea.  I did lose all but 20% of my hearing and I had major balance issues post-op.  To be fair, unbeknownst to Dr. Fukushima (or me) my non-AN side vestibular nerve had apparently been destroyed as a result of nasopharyngeal radium irradiation as a teenager.  When he took out my AN and vestibular nerve on the other side, I had NO working vestibular systems anymore.  Thus, I used a walker, graduated to a cane, and finally through extensive vestibular rehab adapted to only two systems (vision and sensorineuro) to stay upright when walking.

However, in my case, the most significant issue was the regrowth of my tumor.  Although Dr. Fukushima assured me he had gotten all of the tumor, apparently he did not.  Even so, usually any tiny fragment left behind does not grow.  Unfortunately mine did (5 to 9% of pieces left during retrosigmoid do).  When it had grown to 1.3 cm on the February, 2011 MRI and Dr. Fukushima wanted to wait another year for the next MRI, I decided to go elsewhere.  I just had translab surgery two weeks ago today at House Ear Clinic with tremendous results.  Had lunch with AN friends in LA last Saturday and walked all around downtown LA.  They could not believe the stamina I had.

Please understand that I have total confidence in Dr. Fukushima's skills and I do not fault him for causing my regrowth.  My regrowth was most likely also caused from the radiation I had as a kid.

Just want everyone seeking treatment to know that we are blessed in this country with excellent medical professionals in many places, not just Duke and HEI.  Do your research and then go with your gut!

PM me if you have other questions.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Husband's surgery May 6th
« Reply #17 on: May 26, 2011, 02:22:13 pm »
Thanks, Clarice, for putting this issue into better perspective. 

We've covered this issue before but as the membership on these forums is fluid,it bears repeating.  Many AN patients have had great experiences and excellent outcomes with doctors that are not well-known on these forums.  My neurosurgeon was top-notch, highly respected by everyone that knew him.  The hospital nurses confided that for my surgery (AN debulking) I had "the best doctor in the state".  However, I have never seen his name mentioned on these forums (my posts excepted, of course).  He is a longtime member of the ANA and did a masterful job on successfully debulking my large AN, then teaming with a brilliant radiation oncologist to 'map' my 26 FSR treatments, which were also successful (and drama-free). This is just one of many examples of 'local' doctors that do exceptional work with AN patients but because they don't practice at HEI or in a major city, are relatively 'unknown'.  This is also why we usually caution newly diagnosed AN patients to research and seek out more than one doctor consult.  We sometimes mention that there are many fine doctors with the skill and expertise to treat acoustic neuroma patients all around the country but they have to be sought out because they do not advertise and sometimes, as with my neurosurgeon, can be 'overlooked' as the patient assumes that they have to go to HEI, New York or some large university hospital near a major metropolitan area to find competent doctors who can address an AN successfully.  That is not necessarily so and again, I appreciate your pointing that out.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.