ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: VetfromTXwAN on January 18, 2019, 05:55:32 am
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Greetings from Dallas from a newly diagnosed! I am so thankful to have found this group. I know a big part of my acceptance of this will come from my ability to meet others who have walked this journey and later help others who are just beginning. I'm a 35 yr old male, physically fit, and plan on hearing my toddler sons for the rest of my life!
After complete hearing loss in my left ear in mid-November, I was diagnosed w/ sudden sensorineural hearing loss. I then underwent three rounds of intra-tympanic steroid injections, in addition to a heavy dosage of prednisone, orally. My hearing did come back to roughly 30% in the left ear and I've been more than happy w/ my current quality of life (30% in left, 100% in right).
My AN diagnosis came on 12/28, after an MRI at the Dallas VA, which read "Very large smoothly marginated enhancing mass is seen in the right CP angle cistern and extends into the right IAC. The lesion measures around 2.7 cm long and 2.2 cm anteroposteriorly and is about 2.2 cm in its craniocaudal dimension." I was then referred to UT Southwestern for an initial consult w/ Dr. Jacob Hunter. This appointment took place just this past Tuesday and I was quite surprised to learn that the AN was actually on the right side while my hearing loss was in the left. This was the first I had learned of this new complication, which obviously limits my treatment options. If I were to choose surgery in the right ear, my only remaining hearing would likely be the 30% in my left ear. Dr Hunter recommended waiting six months for a follow-up MRI to gauge growth rates, then scheduling a cochlear implant evaluation for my left ear and additional consults with neurosurgery (Dr. Barnett) as well as radiation oncology to learn about the pros and cons of all available options. I was very impressed with Dr. Hunter, as he presented a very thorough treatment plan, but definitely plan on seeking out 2nd opinions to ensure I have the best care possible.
A few questions for the community:
1. Has anyone else experienced this issue of hearing loss in the opposite ear? My right ear is fully functional and it just seems very difficult to explain.
2. Where else should I seek a second opinion? I am mailing my records to Dr. Brackmann @ House for a phone consult, after a referral from a family friend who had an AN in 2014 and had a wonderful experience. I also plan on reaching out to Drs. Schwartz and Friedmann after learning of their practice through this group.
3. Has anyone else come through the VA hospital network and used VA Choice (Tri-West) for their coverage? In early conversations w/ my community care coordinator at the VA, I've been told that my treatment will only be covered at UT Southwestern, where my originally referral was made. Tri-West tells me that the House Clinic is in their network and I would just need a referral from the VA. I plan on fighting this to ensure I have the best possible care, but even if it's not an option, I can use Blue Cross Blue Shield where I am covered through my wife's plan.
Thanks in advance!
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Check out Barrow Neurological Institute at Saint Joseph's Hospital in Phoenix, AZ. They are one of the top rated neurological hospitals in the SW, and probably just as equivalent to Stanford and San Diego. They are also a little bit closer to Dallas. Best of luck.
Gary
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New drug “ mifepristone “ gives promise stopping/shrinking the growth of AN, perhaps it will help in your situation, best of luck!
https://www.news-medical.net/news/20180403/FDA-approved-drug-for-chemical-abortion-shows-promise-for-treatment-of-vestibular-schwannoma.aspx
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Check out Barrow Neurological Institute at Saint Joseph's Hospital in Phoenix, AZ. They are one of the top rated neurological hospitals in the SW, and probably just as equivalent to Stanford and San Diego. They are also a little bit closer to Dallas. Best of luck.
Gary
Thanks Gary! I'll definitely look into Barrow.
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Given your hearing situation, it's even more critical to investigate thoroughly what the options are. At the very least get a 6 month MRI to see whether it is still growing. Most tumors have already stopped growing by the time they are diagnosed.
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ANSydney, do you know of a study or publication that provides evidence that most tumors have already stopped growing by the time that they are detected? As much as I would like to believe this is the case, this forum is filled with posts from people whose tumors have continued to grow after their initial diagnosis. You may have posted the source of this information previously, but if you don’t mind could you post it again? Thanks.
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https://acusticusneurinom.dk/wp-content/uploads/2015/10/natural-history-of-vs.pdf
http://etheses.bham.ac.uk/3748/1/Martin12MD.pdf
https://www.sciencedirect.com/science/article/pii/S1808869415311897 (click Download PDF)
http://surgicalneurologyint.com/wp-content/uploads/2016/05/6721/SNI-7-59.pdf
http://www.elsevier.es/en-revista-acta-otorrinolaringologica-espanola-402-pdf-S2173573514000957
https://www.anausa.org/smf/index.php?topic=23404.msg979773646#msg979773646
Some links may be duplicates.
I think it's universally recognised that most tumors have stopped growing by the time they are diagnosed. The argument is how many: 50%, 70%, 87% etc.
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Thanks ANSydney.