ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: JLR on September 03, 2016, 03:04:16 pm
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Hi there, so I have a failed CK. very disappointing. The tumor has showed re growth with trigeminal neuralgia. It was 2.2 2.2 2.2 and in five months jumped to 2.6 2.7 2.2. Have 2 opinions and getting my scan together to show Dr. Chang. I did email Dr Chang with the details and he agreed surgery was best but wanted to see scans. Has anyone had mid fossa? Would love detail. Also how long is recovery for this type of surgery. I'm a very healthy and fit 67 year old. Thanks very much. Joan
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I had it May 9. I generally had a great experience at university of Iowa. Surgery went very well. The recovery is tough for a few weeks. But it's not bad as far as pain or headaches at all. My balance has been slower to fully recover than I expected, but it's basically fine. Still some problems with quick head turns, but it can take a long time to get back to normal. Other than that, just make sure you have a surgical team with as much experience as possible. In your case, particularly one that had dealt with post radiation tumors.
Good luck!
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Are you 100% sure it failed? 5 months is a rather short time-frame to confirm failure. Don't they usually give it at least a full year to see if it's just swelling instead of failure?
Anyways, I feel your concern and fear. I think it goes without saying that I would get "second opinions" from several experts in the field, regardless of where the primary treatment took place.
As you know, Dr. Schwartz and Dr. Friedman are at the top of the list regarding surgery after failed radiation.
In a previous post, I listed some of the top places for treatment. I would simply mail a copy of your most recent MRI and medical history for their free consultation over the phone. This is strickly my "Top 10" personal list:
Dr. Lunsford - Gamma Knife at UPMC Pittsburgh, PA
Dr. Chang - Cyber Knife at Stanford, CA
Dr. Kondziolka - New Jersey, Manhattan, New York
Dr. Sheehan - Univ. Virginia - Gamma Knife - UVA
Dr. Schwartz - House Ear Clinic - Los Angeles, CA
Dr. Friedman - Keck Univ- California
Stephen Tatter and Michael Chan - Wake Forest University North Carolina - Gamma Knife
Clinton A. Medbery, III, M.D. Southwest Radiation Oncology - Oklahoma
Dr. ALLAN THORNTON - Proton Beam Therapy - Hampton University
MDM Cancer Center in Texas
And perhaps your local Gamma Knife, Cyber Knife, or Microsurgery specialists.
Sometimes they can "re-radiate" depending on various factors. It's been said that it's may be more difficult to perform microsurgery after failed radiation; however, Dr. Schwartz indicated an 85% positive outcome with tumors of my size/position (1.8 cm) following surgery with HIM after failed radiation.
Each case is unique and different, but I encourage you to contact him.
Whatever decision you make, I wish you well in your journey. A fully informed decision is the best one you can make.
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Thank you Greece Lover. So pleased you did so well. All the best for your continued successful recovery. Joan
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Hello Bama Story. Thanks. I did have the CK December 2010. I would very much like to read your story but when I click on the link it brings me to someone unrelated to your surgery. Can you please send me your link. Thanks! Joan
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Is middle fossa the preferred method for a tumour of this size?
I would have thought Translab or retrosigmoid?
Sorry to here your tumour has grown after all these years.
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Bama story many thanks for your encouraging story. So glad your doing so well. All the best to you. I will admit I am very nervous about this surgery but I do think it's got to be done. Again thanks, Joan
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Is middle fossa the preferred method for a tumour of this size?
I would have thought Translab or retrosigmoid?
Sorry to here your tumour has grown after all these years.
I believe Dr. Schwartz recommends Middle Fossa if the tumor is no larger than 1.8cm max, and if the hearing is considered salvageable.
It wasn't mentioned in the OP that CK was performed back in 2010. Sorry to hear your tumor has apparently grown after all this time.
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Hi I was having terrible pain from the trigeminal nerve. It was only 5 months since my follow up MRI which by the way was great. Doctor pleased the tumor was stable. And them BAM the recent MRI shows the growth. Have had 2 opinions so far. My scans are on there way to Dr Chang. From my description he recommended surgery and not another round of CK but he'll know more once he sees the scans. You guys are the best. Joan
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Thanks all for your recommendations. I went to several "2nd opinions" and I'm pretty set with Drs Selesnick and Stieg at Columbia Presyterian Cornell Weill in NYC. Thry have a team approach. I'm scheduled for late Oct. nervous as all hell but I have all you guys for support. Oh one of my second opinions was with Dr Chang via phone. I sent my scans to him. He called right after my appt in city and 100% concurred with my NYC appt. Thanks!!!!! JLR aka Joan
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Are you having middle fossa (as indicated in your headline title), trans lab, or retrosigmoid approach?
I was under the impression that Middle Fossa approach was reserved for AN patients with good hearing, and small tumors under 1.8cm.
2.7cm seems like a rather large tumor.
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Having retrosig. The mid fossa was with another surgeon. These new docs said they are doing retrosig. Thanks!!