Author Topic: Boston, 2nd opinion?, translab or retrosig  (Read 2506 times)

maryinMaine

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Boston, 2nd opinion?, translab or retrosig
« on: May 23, 2017, 06:23:36 pm »
Thanks for this forum! I was diagnosed this month with a 2.4x2.2x2.0 cm AN. I went to Dr. David Jung at MEEI in Boston who recommends suboccipital (retrosig) surgery with neurosurgeon  Dr. Fred Barker who I'm scheduled to meet with on 6/22. I read great things about Dr Barker on this forum! But my concern is that Dr. Jung basically said to give up on my hearing in my right ear, though there is still much useful hearing left. I have a history of migraines and really don't want to the risk of headaches that come with retrosig if I can't take a shot at preserving my hearing.  Am I right that translab is the better approach , even as to risk to facial nerve, if you are going to give up on the hearing? Yet I know this is the high volume highly regarded place to be. I am having lots of symptoms in addition to hearing loss - facial numbness (mild), balance bobbles (mild), mild pretty constant headache (not a migraine!), mild nausea, and terrible fatigue that I had assumed was associated with my  history with depression (although I had noticed I was often happily napping without the depression!). The tumor, they say, is too close to the brain stem for radiation. Should I wait until after I see Dr. Barker to bother with a second opinion? How would I get a 2nd opinion. Recommendations?
 I really liked Dr. Jung and his communication skills.  When I asked about translab, he basically said I am best off going with the approach my surgical team is most comfortable with. Which does make sense.
I also don't want to delay things. As it is I only work part time, but had to leave work tonight due to headache and nausea. (The dr.s don't get the nausea, but I can see people on this forum have felt it. So I don't feel so insecure about it!).
Thank you for being here!
Age 59; dx on 5/5/17  w. 2.4 x 2.2 x 2.0 AN. Seeing Jung (MEEI) and Barker (MGH ) in Boston.

Kerrybr92

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #1 on: June 02, 2017, 02:06:49 pm »
Hi Mary,

Sorry you need to deal with this but I am glad you found the group.  I am also from Maine and had my surgery done at Mass General.  I had Drs. Barker and McKenna as my surgeons.  After much research I determined that they were the most qualified to do my surgery in the area.  I had retrosig five years ago.  I did lose my hearing in my left ear. Although I had some hearing prior to the surgery there was no way to save it.  I knew going in that would be the likely outcome but I still wish it wasn't so.  I had some headaches following the surgery and I still get some late at night when I am really tired but I have not had an uptick in my headaches post op.  I had balance issues but they have mostly resolved.  I do have some facial paralysis but it has greatly improved and most people can not notice at all.  I wear a scleral lens since I can not close my eye all the way and I have no tears due to the facial paralysis.

Wow listing all of those things makes it sound worse then it really is at this point.  If you talked to me a year after the surgery I would have had a different tone.  More depressed.  But with all that has happened after the surgery I have never regretted having the retrosig method or the doctors.  They were great I totally trusted them.

Although I am a huge advocate for patients to have options and be well informed I do believe that since we are not doctors it is sometimes unfair for us to make these big decisions.  I think you are dealing with top notch doctors and if that is the approach they suggested and you are comfortable with them then that is what you should do.  If you are uneasy at all then seek a second or third opinion. 

Good luck to you.

Kerry
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

lauriej49

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #2 on: June 02, 2017, 02:14:04 pm »
Hi Mary (and Kerry),

I am posting because I, too, live in Maine.  I had my translab surgery 20 (eek) years ago
at Dartmouth-Hitchcock because I was living in NH then.  I met the doc there, and the
neurosurgeon, and did not go to MGH (my next visit) for a second opinion.  My doc specialized
in translab and had all successful outcomes.  My feeling was that I would go with what he was
good at, and my outcome has been excellent (aside from deafness in AN ear, and issues with
taste which I understand are unusual).  No regrets.  Too bad my doc, Glenn Johnson, has
retired.

Find a doc with experience and go with what he does best!

Laurie in Maine

maryinMaine

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #3 on: June 04, 2017, 09:55:51 pm »
Thank you both, Kerry and Laurie, for your thoughts. After researching obsessively thinking WAY too much about this, I've decided to just try to forget about it and live life until I see Dr. Barker, when I can raise my concerns with him. Then I'll decide about a 2nd opinion.  I don't want to delay things.  Financially, i need these cost to accrue this year. I'm reliant on the Affordable Care Act and really worry about what is happening in Washington.
I'm praying I don't have the complications you describe,  Kerry, but if I do I'll remember your positive lookback and that they get better in time!
Age 59; dx on 5/5/17  w. 2.4 x 2.2 x 2.0 AN. Seeing Jung (MEEI) and Barker (MGH ) in Boston.

ANSydney

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #4 on: June 04, 2017, 11:07:23 pm »
From what I can gather, ENTs will recommend translab and neurosurgeons will recommend retrosigmoid. Your "recommeded" therapy is not a function of you, but who you talk to. Talk to both ENTs and neurosurgeons and get them to point out the pros and cons then decide.

Patti

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #5 on: June 05, 2017, 04:19:14 am »
About the nausea - for less than a year, I had several bouts where I would wake up with head pain and vomiting.  Finally it happened three weeks in a row and went to the doctor and got an MRI immediately.  That's when my story began.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

maryinMaine

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #6 on: June 12, 2017, 08:34:25 am »
Thanks everyone. My nausea has gone. Yay! Not sure what it was. Think I'll post in the pre-treatment area where I probably belong, because I am trying so hard not to worry about new symptoms!    :)
Age 59; dx on 5/5/17  w. 2.4 x 2.2 x 2.0 AN. Seeing Jung (MEEI) and Barker (MGH ) in Boston.

ColleenS

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Boston, 2nd opinion?, translab or retrosig
« Reply #7 on: June 14, 2017, 09:03:26 am »
I had Tanslab = no headaches.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

Cityview

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #8 on: June 17, 2017, 07:00:51 am »
Mary
Good luck on your upcoming consult.
All of the impending healthcare changes in Washington have definitely influenced my recent policy choices as well. It would be nice if we could experience some stability in healthcare markets.
I recently spent a weekend in Ogunquit and plan to go back this Summer, so I love Maine.

Best
« Last Edit: June 17, 2017, 07:12:45 am by Cityview »
Small AN
Successful watch and wait for over 4 years!

maryinMaine

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Re: Boston, 2nd opinion?, translab or retrosig
« Reply #9 on: June 17, 2017, 05:16:11 pm »
Maine is wonderful. Go way downeast to the rocky coast in Washington County sometime. Less crowded and very beautiful.
Age 59; dx on 5/5/17  w. 2.4 x 2.2 x 2.0 AN. Seeing Jung (MEEI) and Barker (MGH ) in Boston.