I just got back from my first visit to NIH as part of the NF2 study. Definitely worth my time! The testing was very thorough - almost SIX hours on hearing and vestibular testing alone!! I highly recommend it to anyone who's been diagnosed with NF2.
The good news from my visit is that my hearing loss is stable, and my AN has not changed in size. My meningioma OTOH has grown, and the doctors at NIH found a second meningioma. It was visible on my January MRI from MGH, but very difficult to see because it is surrounded by blood vessels - which will make it difficult to remove should that ever be needed. They also found 2 spots in my spine that are potentially the beginning of tumors (1 mm or less in size) but they can't be sure till my next MRI. Given the second meningioma, I am now officially enrolled in their NF2 study as opposed to a more general neurology study.
If any one is interested in enrolling in the study, email firstname.lastname@example.org
Susan, thanks for sharing about this NIH study. My husband was accepted for the NF2 study September 2013 a year and two weeks later since your original post, for his AN 2.3cm He got in just before the US Gov't shutdown of October 2013.
My husbands AN was discovered in 2012, we found out about the NIH NF2 study from the ANA support group meeting in Washington, D.C.Notice** This NIH AN study is totally free, which is very comforting for those of us who cannot afford medical treatment, this program will cover all surgical costs everything...
P.S. NIH is National Institutes of Health located in Bethesda, Maryland USA
NIH is made up of 27 Institutes and Centers, each with a specific research agenda, often focusing on particular diseases or body systems.The Institute doing this study is officially known as " National Institute of Neurological Disorders and Stroke (NINDS) — Est. 1950 ",
there are many different Institutes at the National Institutes of Health such as: National Cancer Institute (NCI) — Est. 1937, NIH Clinical Center (CC) — Est. in 1953, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) — Est. 1962http://www.nih.gov/icd/