Author Topic: newly diagnosed, have questions, and looking for surgeon  (Read 6232 times)

lovemybabies

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newly diagnosed, have questions, and looking for surgeon
« on: April 30, 2014, 06:52:41 pm »
Two weeks ago I was diagnosed with a 2.5 or 3 cm AN.  The size seems to grow with each doctor we speak with.  My neurologist mentioned 2 cm in the beginning, then she said 2.5 cm, then Fukushima said 3 cm, and the last doctor I met with said 3.5 cm. 

I'm only 33 years old, and I feel surgery is my best option, and the 3 doctors I've met with agree.  My hearing is actually perfectly normal so far in my AN ear, so Dr. Fukushima recommended the retrosigmoid approach as an attempt to save my hearing, although he said it would be unlikely he could save it.  I'm concerned about having the retrosigmoid approach because I've read it is more prone to causing headaches and is more dangerous to the facial nerve.  I'm terrified of facial weakness and/or paralysis!  I was also told by the doctors at UNC that retrosigmoid involves lifting up parts of the brain to get to the tumor.  Yikes!  I've been told translab is the safest for the facial nerve and the least likely approach to cause hearing problems, but that will guarantee deafness in an ear where I have great hearing.

I have met with Fukushima at Duke and Buchman and Ewend at UNC.  Does anyone have any thoughts/knowledge about these surgeons?  Does anyone know any other outstanding and experienced surgeons near North Carolina?  I'm willing to travel to House if necessary, but I have 4 children and if there is a qualified surgical team within a few hours driving time from where I live, that would be wonderful.  Dr. Fukushima told me he does his surgeries with Dr. Cunningham.  Has anyone heard anything about McElveen or Calhoun?

Any information anyone has to share would be greatly appreciated!

james e

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  • 72 years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: newly diagnosed, have questions, and looking for surgeon
« Reply #1 on: May 01, 2014, 09:26:56 am »
Good first post! I cannot aid you with a choice of doctors in NC but I can address that staying close to home is important. You have a large family and they will want to visit you in the hospital  and that is a big benefit for them and you. Long distance travel following surgery can be difficult. I talked with House but they were out of my network, so I stayed in Texas and had a great experience here. You will probably get some responses from NC folks about the doctors you have interviewed.

I lost 85% of my hearing prior to surgery so I had translab to save my facial nerve. Not giving you advice here...just explaining my experience. I am SSD as a result of the surgery and it is not the end of the world. My Cochlear BAHA does not replace my ear but I can hear conversations on my right side, hear the TV better and the down side is I do not have stereo hearing and cannot determine the source of sounds. If I had all of my hearing I may have made another choice.

My face is totally functional and that is all I was hoping for. I can still smile, open and close my eye, taste food, and hear through my BAHA.

Life is pretty good! Hug your babies for us!

leapyrtwins

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #2 on: May 02, 2014, 09:41:24 am »
My hearing is actually perfectly normal so far in my AN ear, so Dr. Fukushima recommended the retrosigmoid approach as an attempt to save my hearing, although he said it would be unlikely he could save it.  I'm concerned about having the retrosigmoid approach because I've read it is more prone to causing headaches and is more dangerous to the facial nerve. 

My AN was the same size as yours and my doc gave me the choice of retrosigmoid or translab.  I was told that retrosigmoid was unlikely to save my hearing (diminished but with good word recognition) but I chose that approach anyway.  I just couldn't imagine having the docs just "take" my hearing through the translab approach.  I wanted them to least try to save it. 

During surgery my docs discovered that my AN was wrapped around my hearing nerve (something that can't be seen from an MRI) and ultimately they had to destroy my hearing nerve in order to remove the entire tumor.  Post op I supported their decision 100%. 

I opted for a BAHA implant 9 months post AN op and absolutely love it.  It's not like normal hearing, but in my opinion it's the next best thing.

As far as facial paralysis and headaches go, supposedly they are associated more with the retrosigmoid approach than the translab approach but I have neither.  My facial paralysis was very slight and only last a day or two post op; a single dose of steroids cleared it up.  And I've never had headaches post op.

I guess my point here is that you need to do what you think is best for you.  The results of AN treatment - surgery or radiation - are kind of a crap shoot.  You - and your docs - really have no control over your outcome.   You find the best docs that you can but even the best docs can't guarantee you anything 100%.

Follow your heart, your head, and your gut.

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

am2lady

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #3 on: May 03, 2014, 06:43:01 pm »
Hi, I'm in NC as well.diagnosed last May with an 1.9 cm AN. Symptoms getting worse so getting it looked at.
MRI showed - 1.9cm x 1.9cm x 0.9cm AN - as of 5/11/13
MRI showed - 20.5mm AP x17mm  transverse x 20.7mm - 5/8/14

Hokiegal

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #4 on: May 04, 2014, 03:12:25 pm »
Hi! I'm in Greenville, SC, an hour south of Asheville, NC.  When my AN was diagnosed, a local neurosurgeon recommended either Duke or MUSC in Charleston, SC.  I opted for MUSC and was very pleased with the care I received, and with the outcome.  Depending on where you are in NC, Charleston may be a reasonable drive for you.  MUSC houses all neuro patients on the same floor which is essentially a step down unit, so no ICU stay.  Family could visit immediately, and there were  children visiting on the floor.  My husband and dad stayed with me virtually round the clock (my choice; first hospital stay and I was somewhat spooked.)

Like Jan, my tumor was wrapped around the acoustic nerve, and hearing was sacrificed.  My hearing was mostly intact pre-op, so they used retrosigmoid in an attempt to preserve hearing.  The tumor was also wrapped around the facial nerve, and they stopped surgery when nerve monitoring indicated it had been damaged.  I have since regained most of my facial function, and am thankful the nerve was not completely severed.  Skill / experience of surgical team is so important!

Back to your NC options.  Someone recently posted here about Drs. Fukushima and Cunningham at Duke, and spoke highly of them.  You might want to do a search and contact that patient for more information.  I never went for my Duke consult because I felt good about MUSC.  Seems there was also a positive outcome with Wake Forest reported here, but I'm thinking that was radiation.

Hope this helps.  If you have any other questions, please don't hesitate to ask.  Best wishes to you and yours.

Mary
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

theshawn65

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #5 on: May 06, 2014, 08:21:07 am »
First off, sorry to have you here :) I wish you didn't need to be here but since your diagnosis you'll be so glad you found this place. A HUGE help in researching and getting opinions before making your decision. The fact you have great hearing with that size AN is testament to how random and different all our experiences with this stupid tumor present themselves.

A few questions if I may....with no hearing loss, how or what symptoms became present that facilitated your diagnosis? If diagnosed just a few weeks ago your AN size variance by various Dr. does seem a bit strange. I'd be asking them all why their measurements differ so widely. Some may measure differently I would guess, but when I was diagnosed all three doctors measurements were within 2mm of each other so I would be real curious as to what the cause of this was in your situation. Was one Dr. measuring widest point? Another total mass?

I would recommend sending your MRI CD to a few other Dr(s) for their input, even if not used I hear Dr. Chang at Stanford will give his opinion if your images are sent to him. With his experience it would be some nice input I would guess. In your situation I might also speak with doctors about dual attack, is there an option to excise a good portion and FSR the rest to save hearing? The makeup and position of your tumor may affect this, but some have gone this route.

If I remember correctly from my research before making my treatment decision retrosigmoid carried about a 10% risk for the headache issue post-op and can't remember exactly how long that lasted for the people who dealt with it.

Never forget it's your head and life your doctors are talking about, as some seem to forget it in their zeal to treat. Ask any question that comes up, write them down before going in for discussion so you don't forget. Doctors are just fellow humans like the rest of us, prone to treatment prejudices and biases like we all carry in life in certain areas or contexts. They can be wrong, they can make mistakes and they are not gods. Respect their opinions but don't bow to them imo.

I remember after meeting the first neurosurgeon (Dr. Samy at UC Neuroscience Inst) who said my tumor was too big for radiation, my wife was with me and was adamant about me getting it out. However, after researching more I decided to get other opinions about the radiation option. The second neurosurgeon (Dr. Warnick at Mayfield Clinic) said radiation was most definitely an option but he said it was up to me as he could see both options as valid. The third was a radiation Oncologist (Dr. Breneman at UC Neuroscience Inst) who obviously also said radiation was definitely an option. My wife was mad "why would the first guy say it wasn't an option when it was?". My answer was because he's human, he was a nice guy and obviously very good at his chosen craft, but still a human prone to bias. If I had just gone along like a sheep with no questions I'd of had surgery for sure as he cut off the other possibility. But, after coming here and reading up on AN and seeing all the other experiences with Dr's around the country I was better equipped to challenge them.

Bottom line, it's your head, your life and your family this tumor is messing with. Don't be afraid to challenge the system (doctors that is) if you feel like you're being herded in a certain direction. It could be because that's the best way, or it could be because that's all they know.

Good luck and God speed with your decision.
2.2 x 2.2 x 2.3cm AN -- 3 FSR LINAC Oct 23-25th 2013

john1455

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #6 on: May 06, 2014, 11:04:40 pm »
Patients need to keep in mind that when a doctor gives advice or makes a recommendation, he/she does so based on his personal experience and background. There is always more than one way to get from Point A to Point B so people should not feel frustrated when one doctor says one thing and another says something else. There is seldom one answer for any problem whether it be medical, dental, or otherwise, and multiple opinions are more often the rule rather than the exception. There is seldom one "right answer" because healthcare professionals have differing backgrounds, training, and expertise. This is why the doctor's background is as important as his opinion. If you send your scans to House in LA for a free evaluation, I will almost guarantee that they will recommend surgery because that is all they do. However, if you send your scans to Dr Chang at Stanford or Dr Yang at UCLA, then you will likely receive a more unbiased opinion since they do both open surgery and radiosurgery (radiation).
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

Cheryl R

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #7 on: May 07, 2014, 05:25:05 pm »
Dr Ravi Samy did his fellowship at Univ of Iowa where the neurotologist Dr Bruce Gantz.          My first AN surgery was when Dr Samy was doing his fellowship there so was one of my surgeons.       I really liked him and have met him again at more than one of the AN symposiums and talked to him.       Dr Gantz is not big on radiation which is why Dr Samy also may not be.     Plus there can be a difference in how each dr feels about the size that is safe for it.               I have in time went on to meet several fellows due to my finding in time to have NF2 and 2 more tumors with surgery for each.            Making the right decision for treatment is not easy.
                                             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

Kat From Indiana

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #8 on: May 07, 2014, 06:31:04 pm »
I am fairly new here and still learning, but I am wondering... Did no one recommend Middle Fossa? And if not, is it  because the neuroma is too large?  I thought that Middle Fossa gave the best chance for preserving hearing (as far as micro-surgeries go). Maybe I am wrong. There does seem to be a lot more doctors doing retro or translab than do MF, and the docs want to do what they have experience with.  Have you researched ALL the surgical options?  Are you going to see a radiologist as well, for no other reason than to say that you have considered all your options?
Diagnosed 3/29/14 Right Side AN 8mm x 3mm x 4mm
GK UPMC 6/13/14
MRI 12/03/2014

wsflyer

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Re: newly diagnosed, have questions, and looking for surgeon
« Reply #9 on: May 28, 2014, 06:30:45 pm »
I wish you clairvoyance and peace through your decision process.  It is never easy, but when you make the educated decision move forward and do not look back.

I was in a similar situation as I was incidentally diagnosed with an AN with normal hearing in the ear.  It was extremity difficult to accept the hearing loss risk associated with surgery.  I was given 10-60% chance of saving hearing in my AN ear by the various surgical teams I visited, they all recommended retrosigmoid.  A few said radiation was an option, but not their first choice given my age (38). 
We decided to travel for retrosigmoid surgery and fortunately had a wonderful outcome (the location of the tumor was favorable to hearing preservation when the doctors got in).  Thankfully 10 weeks post op headaches are all about gone, I do get an occasional (once or twice a week) one but it is so mild I  usually do not take anything. 
My travel for surgery was not convenient, I have 2 young children and my wife came with, but I wanted to be at the absolute right place for me personally. 

I wish you the best.
2.0 AN -Right side

Diagnosed (incidental-no symptoms on AN side) early Feb 2014

Retrisigmoid at USC Dr Friedman/Dr G 3/18/14
Normal Hearing/ No facial paralysis