Author Topic: NIH study  (Read 5557 times)

Susan A

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NIH study
« on: August 25, 2012, 07:01:58 pm »
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 nf2@nih.gov
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

alicat

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Re: NIH study
« Reply #1 on: October 07, 2013, 07:47:11 pm »
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 nf2@nih.gov

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...

AliCat
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. 1962
http://www.nih.gov/icd/

Raven

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Re: NIH study
« Reply #2 on: October 10, 2013, 05:04:53 pm »
I've heard of this study and it sounds interesting..........I have very good insurance and a great Dr. who watches over me, other then helping out with a study, what benefit does one get from this. I still have a AN on my right side and five small tumors on my spine, so I'm definetly NF2. It is about an hour and a half drive to NIH from where I live.

John
« Last Edit: October 10, 2013, 05:08:09 pm by Raven »
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Susan A

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Re: NIH study
« Reply #3 on: October 20, 2013, 07:25:23 am »
Alicat - glad your husband got in to the study - and managed to get seen before the shutdown :-) What did he think of his visit? Did he get anything useful out of it? What was his impression of Dr Germanwala?

John - given that NIH is only a 90 minute drive away for you, I highly recommend it for a second opinion. They do more testing than my NF2 doc in Boston does - balance testing for eg which my doc has never done. The docs there spotted my 3rd meningioma that no one at MGH had noticed - and it's in a really tricky place to ever do anything about. It was helpful to get the upfront opinion from Dr Germanwala - who is an amazing neurosurgeon - that he would not touch it. I'm glad I don't have to rely on NIH for my NF2 care as some people do, but it still feels good to be able to go there for a second opinion from people who are so experienced with it.

I have a great doc and good insurance too, but I do this for the second opinion and to contribute to medical knowledge. I was incredibly lucky to be diagnosed very quickly, but I know there must be more people like me with mosaic NF2 who go undiagnosed for too long. And, of course, I also do it for the subsidized trip to DC :-)  I go for 4 days in August with my family. NIH pays for a good chunk of the hotel and mileage costs for getting down there, & while I'm at appointments my husband and kids go sightseeing!

The time commitment is about four days once a year. (Up until recently there was a second visit of 2 days, but I've heard that they are about to drop that.)
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Susan A

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Re: NIH study
« Reply #4 on: January 15, 2014, 09:55:57 pm »
The NIH natural history study of NF2 is now closed to new participants.
Alicat - your husband made it into the study just before they stopped accepting new signups!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

 


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