NF2 Study at NIH

[Silver Sonnet]

I'm taking part in an NF2 study at the National Institutes of Health.  I've been asked to pass on the information about the study to those of you here with NF2, so here goes:

It doesn't matter whether you have already received treatment for NF2 or not, and it doesn't matter what kind of treatment you've had.  If you have been diagnosed with NF2, you can apply for the study.

NIH (National Institutes of Health) is in Bethesda, MD.  Distance from the facility doesn't seem to be much of an issue.  I'm in Mississippi, and the Institute pays for my fight (or pays gas mileage) there, provides a per diem for my meals, and covers my hotel room while I'm there.  In my case, they did two MRIs, auditory testing,  very interesting vestibular testing and blood work, all completely without charge.  My primary local doctor and I are provided with copies of everything.  The plan was for them to have done vision tests, too, but we ran out of time.  You don't even need a car to get to and from the hotel to the institute; most hotels are in easy walking distance and/or have shuttles to NIH--shuttles to and from the airport, too.

The people are wonderful.  I was made to feel like the only patient in the place. 

I'm having my surgery there on July 6, and the institute will provide, free of charge, follow-up testing and MRIs every 6 months (or more often if your doctor there wants it) as long as the study continues: "at least five years," the paperwork says, but I don't know when the five years started.  Still, some free MRIs are better than no free MRIs.

From everything I can tell, the doctors and staff are the best of the best, and the equipment is the best money can buy--it's our tax dollars at work

If you are interested, here is the contact info:

For protocol 08-N-0044
Gretchen  Scott, BSN, RN, CCRN
Research Nurse
Surgical Neurology Branch
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)
10 Center Drive, Room 3D20
Bethesda, MD 20892-1414
Office: 301-496-2921
Fax: 301-480-1615
Direct Line: 301594-8111
E-mail: gretchen.scott@nih.gov

When my sister discovered this study, I just picked up the phone and called, and they've taken care of everything else.  I'm doing this not only because I'm getting great care for my NF2, but so that, if my kids or grandkids are unlucky enough to inherit this disease, studies like this will hopefully have found a simple cure.

Hope this helps some of you

[Raven]

I was invited to participate in that program, living in the Baltimore area it would have been an easy commute. Really couldn't commit because of work, sounded like they really take an interest in NF2 people, probably should have done it.

John

[Silver Sonnet]

They were very accommodating in scheduling my visits.  I go for 4 days at a time, twice a year.  It works nicely  because of my teacher's schedule, but I can see how it could be difficult for those with more normal demands on their time.  Still, for those who can do it, I think it's very worthwhile

[Susan A]

I go for 4 days at a time, twice a year.

Are you counting travel time each way in that 4 days? I'm interested in signing up, but am wondering how much time you actually spend at NIH.
Thanks!
Susan

[Susan A]

I applied to the NF2 study and have kinda/sorta been accepted. Dr A says I do not meet the criteria for NF2, but they want me to participate anyway. So I'll be officially enrolled in a different study, but the testing they will do will be for NF2. Dr Plotkin told me when I saw him in October that I do have NF2, but that I'm 'special'! He told me today what I already knew - that I'm extremely lucky to only have mild NF2 - other than mild hearing loss I really have no symptoms on a daily basis. OK, I do have tinnitus and headaches, but they're very manageable - and there's no telling what the real cause of the headaches is!

[Silver Sonnet]

Hi, Susan, and welcome   I've already replied to your pm, but I thought I'd answer here, too, in case others are interested.  Actually, the first visit to NiH is four days (three and a half, really) not counting travel time.  The second was two days, but I was on the road home before noon the second day.  I had an eye exam that I normally would not have had (I was supposed to do it during my first visit, but wasn't able to get it done), so maybe the norm is even shorter for the second visit; I'm not sure.

Glad to hear your symptoms are mild, Susan.  If you have to have this, mild is the best way to go!