Author Topic: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA  (Read 8484 times)

mke

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Good morning! Two questions for everybody...
Anybody knows if a NF2 surgery is more difficult than a single AN surgery? I know that the connection between nerve and neuroma is higher than in the single AN event?
Somebody has ever had a surgery with Dr. Fukushima of North Carolina? (except Clarice  :))
Thank you!   

leapyrtwins

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #1 on: August 13, 2012, 05:53:19 pm »
Cheryl R is NF2 and has had more than 1 surgery; I'm hopeful she'll be responding to your first question very soon.

As for question two, if you search the Forum (you'll find a search box in the upper righthand corner of your screen) you should find at least a couple posts about Dr. Fukushima.  If memory serves me, I think one of the Lisas - maybe Lisa P ? - saw Dr. Fukushima.

Best,

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

Cheryl R

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #2 on: August 13, 2012, 06:12:57 pm »
My surgeon never to me said my AN and facial neuroma was more difficult during surgery than the usual AN.  I know the nerve can be going thru the tumor when it is NF2 but am not sure if it does every time.      He called my first one in 2001 sticky. The 2nd was the facial neuroma and did try to remove it all but did sever the nerve so did the nerve graft at the same time.    The AN on the other side was not mentioned either and I had no facial paralysis with that one plus saved the acoustic nerve.   I go to Univ of Iowa for care.         My tumors were in the 1.4 and maybe 1.5 cm and think the facial one might have been close to 2 cm.                 Will see if have any other answers, maybe from Jeff.     
                                                                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

mke

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #3 on: August 14, 2012, 01:04:45 am »
My surgeon never to me said my AN and facial neuroma was more difficult during surgery than the usual AN.  I know the nerve can be going thru the tumor when it is NF2 but am not sure if it does every time.      He called my first one in 2001 sticky. The 2nd was the facial neuroma and did try to remove it all but did sever the nerve so did the nerve graft at the same time.    The AN on the other side was not mentioned either and I had no facial paralysis with that one plus saved the acoustic nerve.   I go to Univ of Iowa for care.         My tumors were in the 1.4 and maybe 1.5 cm and think the facial one might have been close to 2 cm.                 Will see if have any other answers, maybe from Jeff.     
                                                                      Cheryl R

Thank you, I 've tried to search Fukushima and I find a few links. However thank you for your answers! Mirko

Cheryl R

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #4 on: August 14, 2012, 05:45:43 am »
Mirko, If you are coming to the US from another country, I would think about trying to go to House in Los Angeles.     A longer flight but in your case have more security about your own case which is individual with all of us.          Do you have family or friends in North Carolina which is why you chose to go that area?        Clarice can give you info about House since she went there also.              The right choice can be hard and hope it works well for you.
                                                               Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

CHD63

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #5 on: August 14, 2012, 06:26:17 am »
Mirko can correct me if I am wrong ..... I think the concern is having a physician with the most knowledge and experience with NF2 patients.  I hope other NF2 patients will chime in here to help out with other ideas/experiences.

I have shared what little I know with Mirko.

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

april428

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #6 on: August 14, 2012, 02:50:38 pm »
Hello...

Fukushima did my surgery with Dr. Cunningham when he was still with Carolina Ear and Hearing in Raleigh. I was happy and encouraged by Fukushima's confidence and expertise.. though I don't know his expertise with NF2. I would recommend him, he was easy to talk to: I wanted to switch approaches at the last minute to try to save my hearing-- which didn't end up working-- BUT-- no facial issues, no long term-dizziness, after the first month-- overall, a success in my opinion.

Hope that helps.
April

36mm x 27mm x 28mm, right side
Minor hearing loss only symptom
Diagnosed July 30, 2008 (age 29)
Retrosigmoid (Suboccipital) Dec 18th 2008
SSD, no facial paralysis
The AN calendar http://my.calendars.net/AN_Treatments

mke

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #7 on: August 27, 2012, 03:37:48 am »
Thank you April for your report.  :)

mke

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #8 on: August 27, 2012, 03:42:48 am »
Clarice your experience with HEI is important for me...and thank you for your support.
As soon as I know something more about my choices I'll let you know.  :)
 

CHD63

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Re: 2 QUESTIONS FOR EVERYBODY ABOUT NF2, SURGERY AND DR. FUKUSHIMA
« Reply #9 on: August 29, 2012, 06:40:12 am »
Mirko .....

I have been away from the forum for about a week.  Let me know how your decision-making is going.

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

 


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