Announcement

Collapse
No announcement yet.

How many of us here with Spina Bifida?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Hello,

    I've just joined and I have Spina Bifida Myelomeningocele (the most severe form) and Chiari 2 (but minimal/no hydroocephelus) I have kyphoscoliosis. My lesion is lumbar but my sensation/function goes at about T6ish.

    It'd be good to get to know some other people!

    Comment


    • #17
      here i'm 33 years old man with spina bifida in wheelchair, i would like to know if there is here someone that have find a definitively solution for impotence......any sugestion to resolve problem???? thank you in advice

      Comment


      • #18
        Hi Arnold - you'll get far more responses if you post your question in the Relationships and sexuality forum. Also - are you interested in achieving erection or ejaculation/orgasm - two different issues, oddly enough.

        Comment


        • #19
          I was born with SBO, fortunately the skin closed and protected the cord. There are bones missing at L4&L5. I've known about it since I was five, when a hairy patch started growing on my back. Over the past four to five years, been dealing with severe back pain, sciatica, and gradual reduction of reflexes in my right leg. FINALLY convinced a country bumpkin doctor (who told me, oh you're fine, it'll work itself out in 4-6weeks )to refer me to Duke in NC, and seeing a pedi neurosurgeon now who dx tethered cord (very visible from their MRI).

          Having detethering surgery on the 19th *crosses fingers*

          Sorry didnt' realize this was an old thread
          Last edited by BlueEyedVAGirl; 09-07-2011, 09:48 AM.

          Comment


          • #20
            Originally posted by BlueEyedVAGirl View Post
            Having detethering surgery on the 19th *crosses fingers*

            Sorry didnt' realize this was an old thread


            Doesn't matter if it's old - good luck on your surgery! Let us know how it goes for you.

            Comment


            • #21
              Originally posted by JimD View Post
              Doesn't matter if it's old - good luck on your surgery! Let us know how it goes for you.
              Thanks! I'm sure I will have my phone in the hospital and be looking for something to get into while laying there, so I'm sure I'll be on the board LOL, Thank god for my IPhone

              Comment


              • #22
                SB Myelomeningocele T9, Hydrocephalus and Scoliosis here.

                Comment


                • #23
                  Originally posted by EricaBold9780 View Post
                  SB Myelomeningocele T9, Hydrocephalus and Scoliosis here.

                  Welcome!

                  Comment


                  • #24
                    Sb

                    I'm here. I just joined. I was born with spinal bifida, and a club foot. I did okay until my 30's. I now have a tethered cord. It seems like now it just keeps getting worse every year. I have spent time in a wheel chair. But most of my life I have been able to walk. Doctors said I was a miracle. I have had lots of good days and I am VERY thankful. I have been stuck in bed for 3 weeks as of today, I've been having some BAD days. It is really hard, I can only get up for short periods at a time, really short, but thank God for that. Does anyone know anything that might help us. They said I can't have surgery.

                    Originally posted by BlueEyedVAGirl View Post
                    Thanks! I'm sure I will have my phone in the hospital and be looking for something to get into while laying there, so I'm sure I'll be on the board LOL, Thank god for my IPhone

                    I know right ;D

                    do you have problems in your arms too

                    yes it sometimes does get worse as we age. Mine has.

                    Me too..so sorry. You are in my prayers

                    very old...it's been years but I still said a prayer for your surgery! ;D
                    Last edited by SCI-Nurse; 04-26-2013, 09:23 AM.

                    Comment


                    • #25
                      Who said you can't have surgery? I mean is it not an effective treatment or insurance?

                      And yes, many of our threads are several years old.
                      Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                      Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                      Comment

                      Working...
                      X