CHARGE Family Support Group Forum :  chargesyndrome.org.uk The fastest message board... ever.
Discuss anything and everything to do with CHARGE. 
Re: Spina Bifida Occulta
Posted by: Marty (IP Logged)
Date: November 29, 2005 09:01AM

I was born with Spina Bifida Meningocele. I was discharged from the Navy after complaining about low back pain. I was not discharged because of the pain, but because I did not tell MEPS before I entered that I was born with Spina Bifida. (I was Honorably discharged btw). I did not know what Spina Bifida was at the time, and at first the Navy doctor who determined that I would be discharged mistakenly diagnosed me with Spina Bifida Occulta.

There are three types of Spina Bifida and you can read about them here:

[www.sbaa.org]

A Zanetic, I appreciate your concern, but it is horribly irresponsible to diagnose people on this forum and tell them ALL of their problems are because of Spina Bifida. You sound like you have an agenda that is either well intentioned but misguided, OR you are trying to make a buck by scaring people.

I have the second most severe type of Spina Bifida, but I do not let it stop me from enjoying life. Most people who see me have no idea I have any issues at all.

I made the decision two years ago to not lay down and die. I lost 60 lbs, changed my workout routine to strengthening my core (abs and lower back), and I stretch everyday.

Also, EAT LOTS OF BRAN!!!! The pressure that constipation puts on the lower back causes 99% of my back pain now that I lost weight. So staying regular by eating healthy food is a MUST!!!

Do not take alot of pills for pain!!! It will only swell you up more and cause more pain. Remember that too much weight pushing down on the spine will cause more problems.

Do not lay around- STAY ACTIVE! The more you let the pain beat you down, the more isolated you will become from a normal life and that will cause depression and it will make your muscles weaker- more back pain.

Be very careful of chiropractors! They mean well, but I had two put me in more pain than I needed.

I also have degenerative disc. I leave out the disease in the name because it's not really a disease.

I was born with not just A hole in my spine, but rather three in two veterbrate. I also had a small meningocele that had to be removed when I was 18 months old.

Over the last few years I have worked with the SPina Bifida Associtaion in my state to help children with Spina Bifida. These children by in large have the most severe problems and some of them have died since I started working with them.

I am posting this not to dismiss anyone's claims of suffering and pain. I know what you feel is real. But most people will never listen to you because so many have either never heard of Spaina Bifida or they do not believe that it can cause the issues you complain about.

I would reccomend you see both a good neurolgist and a good orthopedic.

Regards



Subject Views Written By Posted
  Spina Bifida Occulta 529 Dee Stainer 08/27/2004 07:22AM
  Re: Spina Bifida Occulta 422 Jesbristow 01/05/2005 10:58PM
  Re: Spina Bifida Occulta 383 sarah B 01/12/2005 11:12AM
  Re: Spina Bifida Occulta 367 caro h 01/28/2005 06:51AM
  Re: Spina Bifida Occulta 360 jill 11/21/2005 05:40AM
  Re: Spina Bifida Occulta 370 A Zanetic 01/18/2006 07:38PM
  Re: Spina Bifida Occulta 331 Chris 02/06/2005 11:48AM
  Re: Spina Bifida Occulta 306 sharon 03/27/2005 07:21AM
  Re: Spina Bifida Occulta 330 Alexander Gray 11/13/2005 01:49AM
  Re: Spina Bifida Occulta 311 angela orr 04/01/2005 03:04AM
  Re: Spina Bifida Occulta 345 A zanetic 05/03/2005 05:23PM
  Re: Spina Bifida Occulta 85 marnixg 05/04/2010 09:14PM
  Re: Spina Bifida Occulta 1207 DIAN ROBERTS 05/12/2005 11:40PM
  Re: Spina Bifida Occulta 310 Kim 07/25/2005 08:22AM
  Re: Spina Bifida Occulta 320 Kristin Morrow 07/30/2005 02:59PM
  Re: Spina Bifida Occulta 281 Shaz 09/03/2005 01:53AM
  Re: Spina Bifida Occulta 299 Nancy Allen 02/14/2005 02:06PM
  Re: Spina Bifida Occulta 295 sharon 03/27/2005 07:19AM
  Re: Spina Bifida Occulta 276 Rozzy 05/07/2005 06:54AM
  Re: Spina Bifida Occulta 274 jane 07/09/2005 08:31AM
  Re: Spina Bifida Occulta 288 Jean 11/08/2005 04:43PM
  Re: Spina Bifida Occulta 258 claire 11/10/2005 09:31AM
  Re: Spina Bifida Occulta 322 Roy 11/12/2005 06:43AM
  Re: Spina Bifida Occulta 309 Erin 12/24/2005 05:19PM
  Re: Spina Bifida Occulta 256 Dana 01/20/2006 01:54PM
  Re: Spina Bifida Occulta 280 A Zanetic 05/07/2005 12:41PM
  Re: Spina Bifida Occulta 278 Rozzy 05/11/2005 11:44PM
  Re: Spina Bifida Occulta 296 A Zanetic 05/12/2005 01:39PM
  Re: Spina Bifida Occulta 288 Sarah L 08/16/2005 11:15PM
  Re: Spina Bifida Occulta 287 Ruth 08/20/2005 10:29AM
  Re: Spina Bifida Occulta 275 Erin 12/24/2005 05:07PM
  Re: Spina Bifida Occulta 301 Marty 11/29/2005 09:01AM
  Re: Spina Bifida Occulta 282 A Zanetic 06/12/2005 05:45PM
  Re: Spina Bifida Occulta 271 A Zanetic 07/15/2005 06:26PM
  Re: Spina Bifida Occulta 267 SARAH 07/22/2005 01:30AM
  Re: Spina Bifida Occulta 285 alexia 07/23/2005 05:29AM
  Re: Spina Bifida Occulta 288 SARAH 07/23/2005 09:56AM
  Re: Spina Bifida Occulta 278 alexia 07/24/2005 10:17AM
  Re: Spina Bifida Occulta 263 sarah 07/28/2005 05:13AM
  Re: Spina Bifida Occulta 280 Caryn 09/02/2005 08:16AM
  Re: Spina Bifida Occulta 279 A Zanetic 07/26/2005 12:34PM
  Re: Spina Bifida Occulta 300 A Zanetic 08/23/2005 05:12PM
  Re: Spina Bifida Occulta 484 hello 08/29/2005 12:07PM
  Re: Spina Bifida Occulta 274 Caryn 09/02/2005 08:22AM
  Re: Spina Bifida Occulta 288 cliff 11/04/2005 03:55AM
  Re: Spina Bifida Occulta 816 Carrie 01/19/2006 07:16PM
  Re: Spina Bifida Occulta 121 garybennrtt 03/17/2010 07:17PM


Sorry, only registered users may post in this forum.
This forum powered by Phorum.