Guest guest Posted October 31, 2000 Report Share Posted October 31, 2000 , Hello and welcome! It's nice to see someone post to the list!! My name is . I found out about the TCS when I was 20, although I had no clue that's what it was called. I had surgery at 20 that was a smashing success. I had surgery again at 30, which was pretty successful, though I waited much too long from the onset of symptoms in my opinion. Bladder issues are a big thing. I slowly lost my bladder without even realizing it. It started out as mild incontinence that was caused by constant infections. Then the nerve damage progressed to the point where my bladder doesn't work at all now and I have to catheterize. What exactly would you like to know? This is a pretty broad disorder that can affect a lot of things. I can tell you what it affects on me, but other people get different effects. I have leg pain caused by nerve damage. I take neurontin every day for it. I have muscle wasting on the right side, and weakness in my legs, too. I walk just fine, with a slight limp. Not everyone is so lucky. It does hurt when I walk, but I deal with it. Like everyone else! Let me tell you there are worse things in life than this. Though this is a big deal, and it really messes up the body, it isn't a death sentence, which makes it something I can deal with. I know there are many who have TCS who just want to fall apart and whine and complain about everything that's wrong with them. I prefer to look at what's right and what's good. Ask questions. I know that we will answer them as best we can! --- Busse wrote: > Just found out I had tethered spinal cord syndrome. > I am a 35 year old male. I need to find out all the > info I can about it. My main concern are the side > effects, long and short term, and the whole bladder > issue. HELP FAST!!!! > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2000 Report Share Posted November 1, 2000 Hi , Well, I survived the day as Mickey Mouse! Now, it's dealing with the trick or treaters! , have you been to the various web sites on TCS? Need some URLs to check out? TCS is different for almost everyone - with some common causes and factors. What exactly has your doctor told you? Just to expand a little on my introduction. I was born in 1945 and it was obvious I had some form of spina bifida, but it was covered with skin - so the docs all said don't operate. No one did, but I grew up with a neurogenic bladder and bowel; weird way of walking (no calf muscles) numbness in my rear, legs, and feet; hammer toes and pes cavus feet. I rarely had any pain unless I fell directly on the lipoma. I was stable for years, thru two pregnancies and lots of travel as a Navy wife. Then divorced and single parent of male teenagers, working as a social worker. Around the early to mid-1990s, I started to have lots of pain in my legs, and I was told it was arthritis due to my compensated gait. Several years later, and after no help from any arthritis meds, I started to become more incontinent. At that point I started making waves with my HMO and got a referral to a neurosurgeon. This was in 1996 - that's when I learned about lipomyelomeningocele and tethered cord syndrome. I had some complications going into surgery and later when I finally had it, in 1997 - but I did get my bladder back to its usual leaky self, and the pain was much better. I now wear AFOs on both legs. I've had muscle spasms since surgery, not before. I've started having a few new problems recently, tho. But, hey, I've had three good years in-between! My new upper body things are: Occasional numbness in my right little finger and ring finger (Ulnar nerve, I know). Sharp stabbing pains all the way down the top of my arm/inside of elbow, thumb side of wrist on both sides , it burns later after the sharp part- not a wave thing, just intermittant...lots of pain in both thumbs, wrists, palms of hands. I can be holding a pen and it goes flying across the room - my hands are haunted and possessed <G>. All of which COULD be accounted for by a lower cervical problem. Yes, I had a pre-op full body MRI on 11/96. It said - no chiari, no syringomyelia. Mild changes in of degernative disk disease at C5-6 & C6-7, which produce small defects on the ventral aspect of the sac. No significant stenosis or cord compression. Degenerative disk disease at T10-11, T11-12 & T12-L1 . That's not to mention the totally screwed up lumbar/sacral stuff. Makes me think the disk disease is maybe worse? -- Life shrinks or expands In proportion to one’s courage. Anais Nin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 can anyone pls help me I am suppose to start a new injectable infergen made by aspire along with the ribivin has anyone heard about this new med it suppose to be a shot a day ( 15mg ) along with the ribisphere 1000mg a day I have grade 3 stage 4 cirrohsis and I am losing ground quick any help ??? Quote Link to comment Share on other sites More sharing options...
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