Post-Treatment > Post-Treatment
Treatment Failure
didyb:
I had surgery 9/13 (retromastoid) then regrowth so GK 1/16. Went in for my yearly MRI 4/18 and was told that it has just about all grown back to the original size that started this whole thing. The MRI showed that the necrosis was shrinking and being replaced with "healthy" tumor again.
So, recheck in 6 months--- with the probable action of surgery again. My lower face has made so much progress over these 4 1/2 years. I've been told that a second surgery will most likely result in permanent total paralysis.
Has anybody else gone through this?
I'm in Houston at MD Anderson- so i don't doubt my physician's abilities, but am thinking it would be good to do a consult with House. Has anyone done the free online consult with them?
I figure if my rare AN is one of the more rare ANs that don't die with GK, it might be time to see what's new/cutting edge.
Gtmochi:
Hi didyb,
I am so sorry you are going through this. How hard.
I live in LA and visited House for a consultation and met with Dr. Slattery. I have heard he is among the doctors who do free consults over the phone. He is excellent, kind, and very experienced. Another doctor you might consider reaching out to (who also do free consults) are those as UCSD. Dr Friedman and Dr. Schwartz (I spoke with them, too) are also very skilled and knowledgable. I understand that Dr. Schwartz in particular is known for his skill in salvage surgery. But perhaps both are. All I know is that all three are great, and though your doctor is wonderful too, it doesn't hurt to ask around. When I got my consults with Dr. Friedman and Dr. Schwartz, I did so by emailing Dr. Friedman's patient navigator, Kris Siwek - her email is: ksiwek@ucsd.edu. She responded very quickly, as did both Dr. Friedman and Dr. Schwartz. I don't have Dr. Slattery's email handy, but if you'd like it I can try and dig that up as well. Another doctor is my own - Dr. Chang. Though his name comes up a lot in reference to CyberKnife, he also does a lot of operations on ANs, and some have been salvages as well. I would imagine his familiarity with radiation and surgery come in handy. Best of luck!
michellef08:
So sorry that your journey has been rough so far! I had the free consult done with Dr. Schwartz and Dr. Friedman back when they were both at house (in 2014). I highly recommend sending your MRI to them in San Diego! They removed my tumor (1.4cm) and preserved my hearing! I didn't have any facial or balance issues at all.
Echo:
I am sorry to hear that you are going through this process yet again. I've been on this forum since 2012 and through all my research both in Canada and the US, the contact names that Gtmochi have provided you with are the ones that I have continually read about - these Dr.s are all amazing. If I were going through what you are, I would most definitely reach out to all of these Dr.'s for second and third opinion. I know of one women through a local support group here in Toronto who contacted House Clinic and went there for her surgery with an excellent outcome.
Best of luck,
Cathie
areles:
my then-22 year old son had a successful translab surgery with house (miller neurotologist, schwartz surgeon) in february 2016. can't recommend them highly enough (though we might have regrowth now/a new tumor on the other side, which is why i just logged in again; if this is the case, it most definitely won't be the fault of house; just bad luck).
i would definitely recommend the phone consult. send them your scans/medical history/any lab reports and you can expect a call from one of their neurotologists within a few days upon receipt. they'll discuss with you their findings and recommend treatment. they will not push you to come to them, but will offer advice as to the sorts of conversations to have with other physicians in the event you go elsewhere.
again, i can't recommend house highly enough, though note that dr. schwartz has moved on to san diego. and even in a phone consult, they will take their time and explain things fully, as though you were on their patient list. there's a reason they are so highly regarded.
good luck to you, and i'm so sorry you are going through this. my best.
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