A place where people living with the Marfan syndrome can talk

Skip to content

dural ectasia

Dural ectasia, scoliosis, stretch marks just to name a few topics you'll find here.

dural ectasia

Postby Isa on Sun Mar 30, 2008 4:12 am

Hi
My boyfriend, suffering from the Marfan syndrome, has since several month severe pain in the lower back and the legs. Doctors diagnosed a dural ectasia. They exclude surgery and suggest pain management. But even with classic pain medicine, his pain is intense. I am looking for other Marfs having the same problem. Which treatment helps to ease their pain?
Thanks
Isabelle
Isa
 
Posts: 1
Joined: Sun Mar 30, 2008 4:10 am
Location: Brussels

Postby Marf on Sun Mar 30, 2008 12:55 pm

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:

"Hi Darren,

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://www.e-neurosurgery.ws/spinalmeningoceles.html

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

http://tarlovcyst.org/
User avatar
Marf
 
Posts: 780
Joined: Fri Jun 02, 2006 12:29 am
Location: Halifax, Nova Scotia

Postby Melissa on Sun Mar 30, 2008 1:16 pm

Looks like Marf has shared some great info and links.

I have not been diagnosed with either, but then again I don't live in an area where there is a lot of knowledge on Marfans and the way it affects many parts of your body. I have the classic symptoms of Dural but I can't find anyone willing to go there with me. I have instead been diagnosed with moderate arthritis in my lower and upper lumber and bulging discs.

I currently work with a Pain Dr. and began receiving injections last October. I am not 100% but I have gone from using 1000mg of Vicodin a day and sleeping the pain away to actually being able to get out. I also lost 15 lbs without trying just because I am able to move more and now can attend school. He is trying to stretch me out to every 3 mos for injections in my lower back just outside the spinal sac and my upper torso but I am not able to go anymore than 2 mos. I don't go back until April 18th and 2 wks ago I called begging for them to get me in sooner. They are a busy practice and they can't so they gave me a script for 500mg of Vicodin 2 times daily. I can only take it at night but at least that allows me to sleep harder and I only slightly wake up when I have to move my hips, legs and lower back and then I am able to go back to sleep better. I am counting down the days when I can get the injections redone. I have been told I am not bad enough for surgery. In fact I have been told that its odd that I have so much pain because a lot of people have the same condition based on their diagnosis and they are able to manage. In the amount of pain I am in at the moment I am writing some expletives come to my mind for them. :roll:

The injections are a mixture of cortizone and demerol and one other medication. It does work in my case just not for very long.

Good luck in your journey to learn more and I encourage him to at least try the Injections...even a slight improvement on a short term for quality of life was worth it for me. I am only 35 and I have 4 kids to keep up with.

Good luck. :wink:
User avatar
Melissa
 
Posts: 294
Joined: Wed Apr 13, 2005 5:29 pm
Location: West Michigan

Postby Washington Irving on Sun Mar 30, 2008 1:28 pm

I thought this preliminary research may be of interest if you haven't come across it already. Dural Ectasia in the Marfan Spine: Symptoms and Treatment.
Washington Irving
 
Posts: 10
Joined: Sun Feb 17, 2008 6:22 pm
Location: England, UK

Postby Marf on Sun Mar 30, 2008 3:21 pm

Washington Irving wrote:I thought this preliminary research may be of interest if you haven't come across it already. Dural Ectasia in the Marfan Spine: Symptoms and Treatment.


This is sort of the point I was trying to make. Most people are quickly directed to dural ectasia because it's a very common word when dicussing marfans. Ectasias of the dura can be as small as grapes in size. I'm willing to bet that most people that are interested in this thread (because of thier own symptoms) have a much larger "dural ectasia" that could better be classified as a tarlov cyst, or better yet an "anterior sacral meningocele".

To anyone dealing with symtomatic dural ectasia...or if you know you have a large one....I'm suggesting you forget the term "dural ectasia" and move along to the other names that will give you alot more, and better information!

I'm not a doctor...but my focus has shifted to anterior sacral meningocele.
I'll update this thread after I have seen my docs again or get any new information.
User avatar
Marf
 
Posts: 780
Joined: Fri Jun 02, 2006 12:29 am
Location: Halifax, Nova Scotia

Postby Ms B on Tue Apr 15, 2008 2:41 am

HI Melissa - I have very severe dural ectasia. It starts as pressure in my head and the pain travels down my back and into my left leg. I'm usually unable to stand straight up because of the pressure. I also get extremely week in my waist and lower back area and the pain in my leg travels down toward my knees. Nothing works for the pain. There have been times when the pain was so severe that I would have to go to the ER to get a shot of morphine. Due to the pressure in my head, I have passed out 2 times at work. This dural ectasia is no fun. I could be bent over in pain one day and then the next day I feel fine. Usually, though it takes a day for the pain to subside. It seems as if I get the symptoms at least once a week. However, I have gone without symptoms sometimes for about a month.
Ms B
 
Posts: 1
Joined: Fri Feb 08, 2008 3:00 am

Dural Ectasia

Postby Shazza on Tue Apr 15, 2008 5:02 am

Hi Isa,
I think we have spoken before. I too suffer from Dural Ectasia. i was diagnosed in 2003, It was from this diagnosis that i was discovered to have Marfans.

My back is worse if I have to stand for more than 10 minutes at a time. I cant walk very far, and Im usually worse in the mornings. Nearly every morning i have to use a heat pack on my back and take a couple of pain killers.

This only eases the pain temporarily. There are other times when I might be o.k, but have noticed it is worse around "the time of my monthly cycle"
Not sure why this happens. sometimes if i lie down for about half an hour the pain eases a bit too. or a warm bath.

Housework, and general getting around the house, from making beds, washing upsets it.

Sorry I cant give you more advise. If you wish to chat just email me
regards

Sharon from Australia
_______________________________________
# symptoms I have had: Dislocated lenses- removed - 1980, Scoliosis, Hearing loss, Arnold Chiari - operated on 1993, Heart valve replacement 2003, Dural Ectasia
Shazza
 
Posts: 85
Joined: Fri Apr 04, 2008 10:48 pm
Location: Australia


Return to Neurology, Orthopedics, Dermatology

Who is online

Users browsing this forum: No registered users and 1 guest