JT,
I think it is imperative to seek multiple opinions. I sought 9 opinions (neurotologist and neurosurgeons) and chose surgeon # 8 (he and his neurosurgeon partner were
both impressive- remember you are picking a team). It is worth having a consultation with both – since this has to be a
team approach. The first team I consulted with were too inexperienced (not even up-to-date on the use of titanium mesh to fill the craniotomy hole- oy ya ya
). 2 of the 9 had malpractice suits against them
- in one case involving
both of them together (another oy ya ya
…Go check out
www.healthgrades.com on the surgeons you are most interested in. It was actually the surgeons
outside of my own state that impressed me the most…
You want someone VERY experienced
and reputable.
Is your surgeon (the neurotologist), you saw, on this list?
http://www.anausa.org/physician_list.htmlIf not there may be a reason for it…
This is the criteria to make the list
http://www.anausa.org/select_med_prof.htmlDid you ask these questions?
http://www.anausa.org/questions_for_physicians.htmlIf you chose a University hospital be sure find out how much of the actual surgery is done by the neurotologist and neurosurgeon (the brain surgery part) and what is done
by students (usually opening and closing under close supervision) as you want
only experienced and steady hands doing the micro-dissection of the tumor in your brain.
Also it is key- to ask about their “CSF leak� and “infection� rates….
Do you really want to be the surgeon’s
first case of bi-lateral AN tumors? (Oy ya ya…!
)
When you mention
bi-lateral I am concerned about NF2. You want a surgeon who is very versed on this.
Have you sent a copy of your MRI, hearing tests, and report to HEI yet?
http://www.houseearclinic.com/physicians.htmLater, after
flying there in person, I found out you can send these in via mail and they will call you back.
I highly recommend you start with Dr. Brackmann (medical advisory board to the ANA) as he is
very versed on bi-lateral tumors and NF2 (dissected more than
anyone in the world).
http://www.houseearclinic.com/brackmannDE.htm(He was so bang on about my atypical tumor and what the pathology would say when it came out)
BTW …No I have no financial interests in House or anything like that – in fact we just
donated to their non profit affiliate
www.heo.org as they try to find the cause of AN tumors (currently the focus is on NF2 genetics) … All of us need to “keep moving forward� on this (too many kids with diagnosed with AN’s now) … not just Nf2…
Here is there blurb on NF2 (BTW I am not Nf2)
http://www.hei.org/news/facts/nf2fact.htmAN tumors “typically� do
not grow fast. Do not let any surgeon pressure you into a decision. Take the time to research and ask questions. You want to make a good choice and not go back saying “I shoulda, woulda coulda� … this is a
life changing experience and you need to make a well thought out decision and know ALL of your options.
Getting on this forum is a
good start.
There is a wealth of informed and experienced patients here.(I also find to be
very supportive)
One thing I discovered is
you will have to be your best advocate in all of this. If the bi-lateral tumors turns out to be Nf2 (Ie genetic) your family has no choice but to get involved. Try to remain calm and collected. Get as much information as you can (this will empower you) … and then inform your family and solicit their support.
Know you already have support here in this forum.
Keep moving forward,
4
P.S. HUGS ( you read like you
really need one about now...)
