Author Topic: Treatment Failure  (Read 1057 times)

didyb

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Treatment Failure
« on: April 19, 2018, 01:53:02 pm »
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.
W/W now due to further regrowth 4-18-18
GK due to regrowth 1-11-16
2.2cm AN reduced retromastoid 9-23-13
Right Side Deaf
Right Side Facial Paralysis (temporary? permanent? who knows)
Right eye lid gold weight 10-17-13

Gtmochi

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Re: Treatment Failure
« Reply #1 on: April 19, 2018, 07:35:34 pm »
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!
« Last Edit: April 19, 2018, 07:42:01 pm by Gtmochi »
1.8cm x 2.2 cm x 2.5 cm Right Side AN
CK at Stanford  with Dr. Chang and Dr. Hancock 4/23-4/25, 2018

michellef08

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Re: Treatment Failure
« Reply #2 on: April 25, 2018, 10:27:45 am »
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.
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

Echo

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Re: Treatment Failure
« Reply #3 on: April 25, 2018, 06:23:18 pm »
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
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

areles

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Re: Treatment Failure
« Reply #4 on: May 12, 2018, 06:31:49 pm »
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.
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

ColleenS

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Treatment Failure
« Reply #5 on: November 08, 2018, 07:36:45 am »
My situation is very similar to yours. Had surgery in May 2017 and the bugger grew back almost to original size in just 15 months. Had Stereotactic radiosurgery last month and now waiting .... It is so frustrating. What did they decide was your next course of action?
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of the tumor; no facial issues
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14/17 & sprung on 5/15/17.
5 Radiation Treatments 10/2018 after tumor grew back.

Alyssa

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Re: Treatment Failure
« Reply #6 on: November 13, 2018, 10:15:10 pm »
Dr. schwartz and Fredman moved to UCSD last October. They are experienced top AN surgeon.

Mlamb

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Re: Treatment Failure
« Reply #7 on: November 14, 2018, 06:32:11 am »
I had a very similar experience. I had retrosigmoid craniotomy to remove my 3cm Trigeminal Schwannoma in 2014. My surgeon left a huge residual that continued to grow. I had gamma knife 1 1/2 years later. Everything was stable at the 1 year mark Post gamma knife but at around 18 months I started having worsening of symptoms. Had an MRI and my tumor showed aggressive growth and compression and swelling of the brainstem. My only choice was another surgery. I sent my scans everywhere. I spoke with Dr Schwartz several times. At this Point, i was not well enough to really travel far for surgery. I had double vision and dizziness whenever I would change position. I consulted with Dr. Sen at NYU, as he was highly recommended by friends who are neurosurgeons. The location of my tumor was very tricky and he managed to remove it all and I am fine. The recovery was long but considering everything that could happen, I got very lucky with Dr. Sen.

 


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