I've been searching high and low seeking treatment for my dural ectasia.
It's been quite a long struggle, but I am gaining ground. I know this is going to sound crazy, but I'd like to suggest you do some research on different names for dural ectasia.
Dural ectasia, Tarlov cysts, and anterior meningoceles are essentially the same thing. I started out looking into dural ectasia....and very soon found out there are not many treatment options, aside from pain medications. Then I started out researching Tarlov cysts. I found out there are surgical options but the results are not published, and finding a surgeon willing to do this is rare, and can be very expensive. It seems to be a grey area.
I am currently in the process of looking into anterior meningoceles. I'm finding there is buttloads of information, and there are some published papers on surgical repairs. I'm gathering stuff now and plan on confronting my spinal neuro surgeon with papers in hand very soon.
I'm sorry I can't help you more...but I suggest you look more into anterior sacral meningoceles instead of "dural ectasia". I'm confident you'll find the information much more usefull. Keep in mind that tarlov cysts and anterior meningoceles are a more severe manisfestation of dural ectasia (probably the reason for the different names) and common in the marfan syndrome. If your boyfriend is having severe symptoms involving his legs, then I personally suspect his doctors are using the wrong term. I'm willing to bet he has a tarlov cyst, or anterior sacral meningoceles. I rarely see anterior sacral meningoceles or tarlovs mentioned in marfan litariture but please let me give you a quote from the Canadian Marfans Association that I recieved from them:
I have consulted with our Medical Advisory Board and they have told me that Tarlov cysts are another name for anterior meningoceles, and are a more severe manifestation of dural ectasia and common in patients with Marfan syndrome.
I hope this information helps."
I'll start you out with a few links...you can determine for yourself if this is a better direction for you. I only wish I had heard the different names for dural ectasia 2 years ago when I started all this...I'd be much farther ahead.
http://content.karger.com/ProdukteDB/pr ... ?Doi=87482
http://www.neurologyindia.com/article.a ... ulast=Khan
http://www.abnc.org.br/biblioteca/Resec ... proach.pdf