NIH study

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NIH study

Postby Eden** » Fri Dec 14, 2012 2:56 pm

So.. March 5th I'm being shipped out to NIH in Maryland, for the natural history of Syringomyelia study. I was just curious if any one else on here is participating in this particular study. I'm excited to talk with a doctor who is so knowledgeable with syringomyelia. I'm also very happy to contribute to finding a cure or better treatment options.
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
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Re: NIH study

Postby gunflint » Fri Dec 14, 2012 7:17 pm

Yes, there are several members here that are in the study. Good luck. When you get your itinerary let me know as I may be able to give you some tips.
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Re: NIH study

Postby reedy » Sun Dec 30, 2012 7:33 pm

That's great that you are in the NIH study! Me too. I'll be going back for my checkup in April. I've had 2 ops from Dr Heiss. He is very very smart and thoughtful.
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Re: NIH study

Postby Eden** » Thu Jan 03, 2013 3:39 pm

It's great to hear a lot of people are participating!
They sent me a detailed packet of all I need to know but I am having so much trouble trying to find a hotel. Every place I try keeps saying they have no rooms available for those dates... Its getting very frustrating. Also, in my packet it states they will reimburse my hotel stay for ONE night but they have me staying two nights??? Hopefully it all gets figured out but its reall annoying that no one will return my calls. Any one else have any trouble?
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
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Re: NIH study

Postby pmaxwell » Thu Jan 03, 2013 3:43 pm

Jill, maybe you are not getting a return call is because of the holidays. Hopefully you will hear something soon.
Together We Can...
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Re: NIH study

Postby eebogan » Wed Jan 09, 2013 7:36 pm

How do you get involved in these?
Idiopathic Syringomyelia. Fibromyalgia.
"Life is what happens when you are busy making other plans." ~John Lennon
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Re: NIH study

Postby Eden** » Sun Jan 27, 2013 12:14 am

So, I still havent been able to get a hold of the lady but I did finally book my hotel! :-) Getting excited now..
@eebogan I just stumbled across this study while on a website for a doctor in Colorado. I clicked on the link and decided to email them. It was very easy actually. I got an email back that day and not long after I got a call from an actual doctor!
Jill 27 yrs old, married to the love of my life. Mother of the most beautiful girl in the world.Diagnosed with congenital SM, syrinx from C-4 to T-12. Shunt placement 9-8-09. T-7-8-9-10 laminectomy, Syrinx shrinking.
Eden**
 
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Re: NIH study

Postby razzle » Sun Jan 27, 2013 12:29 pm

Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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