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Thread: Newbie here! Anyone else with Diastematomyelia?

  1. #1
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    Smile Newbie here! Anyone else with Diastematomyelia?

    Hi there,

    I'm Sally and am a new recruit to this forum (i'm a friend of Little Ali who just posted on the SB thread).

    So a little about me... i'm 27 years old (28 next week!), and to put it in simple terms, i'm a bit of a mixed bag! I have: Spina Bifida Occulta, diastematomyelia (split cord malformation, which caused my tethered cord - released during surgery when I was 3),hemivertebrae (well, I did until I had a big op 10 years ago to decompress my spinal cord), kyphoscoliosis, leg weakness, right pes cavus (hyperarched foot), left pes planus (flat foot), drop foot (the right one - paralysed during the aforementioned surgery), for which I wear an AFO, and to top it off, I have a neurogenic bladder.

    Despite all this weirdness, I had a reasonably normal childhood (well, regular hospital visits were a very normal part of life for me!) - I grew up, got qualifications, went out to work blah blah and have been fine spine-wise for several years now. All that changed about a year ago - started getting horrible nerve pains in my lower back and into my left leg (previously my 'good' leg), as well as weakness and numbness (I already had very patchy sensation anyway, but it's gradually got worse) and all sorts of weird neuropathic stuff going on - burning, stabbing, tingling, hypersensitivity etc. X rays, two MRIs and a CT scan haven't thrown much light on things, only that I have heterotopic ossification at L4/5 and on the sacroiliac joint that *might* be responsible. The next thing is probably a myelogram but having had that before i'm understandably reluctant (risk of spinal cord adhesions, as if I don't have enough scar tissue already!). Other than that, i'm fine

    Anyway, sorry for running on! I hope to find more people out there with similar spine issues.

    Sally x

  2. #2
    Hi sal, sorry you have to be here but glad you found us! There's a weath of information, ideas & suggestions, some people are a bit harsher than others, but take what you can & try not to take the 'rude' ones personal - they're still just trying to help, in their own way.

  3. #3

    Cool Cauda equina?

    Hello, Sally,
    I've been lurking lately so I wished I had seen your post much sooner. Have you had any new diagonses or any leads on your symptoms? I have a laundry list too, and also have Cauda Equina Syndrome and SBO. With your symptoms, they could easily fit into the CES range, but you really need a proper diagnosis, whatever it is.

    Please keep us posted. If needed, post again with "Cauda Equina" in your thread or do a search for Cauda Equina (CES) and see what pops up. Find others with CES via that search and keep on asking and seeking. It took me years to find out the totality of my diagnoses (it was only a year prior to surgery that I found all the wonderful folks and info on CareCure), which then led to a major corrective surgery that restored most function on my left side. Your ossification at L4/5 is at the same level as my listhesis; perhaps that's why alot of your symptoms made the connection (in my brain) to cauda equina.

    I would love to discuss AFOs with you or anyone using them; I have had mine for 3 weeks and have discovered it is a love/disdain relationship. I may be going to a KAFO tho, as the left side deficit seems more prounounced than first thought. Did I mention I'm a mess?

    Blessings to you,
    Margie in (very very frigid) NW Florida
    Last edited by SeabeeMom; 12-29-2009 at 08:55 AM. Reason: added L4/5 info

  4. #4
    SeabeeMom,

    I posted some information on AFO's in the equipment section earlier that you may find helpful. Sorry, I didn't post it here. I couldn't access the thread.

  5. #5
    Welcome Sal

  6. #6
    Moderator jody's Avatar
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    I had exposed cord when I was born at t-10. I do not remember the type of spina bifida, also occulta something. it looked like a bubble on my spine. I had only lack of tone and pigeon toes until an accident. After my accident I developed fluid on both sides of the scar left from the repair, and cauda equina syndrom. accident caused an injury at L5s1, and c-spine degeneration has affected my hands. I use leg braces, and have lef t side weakness.
    Im sorry you feel you are a mess. welcome to care cure anyway.
    so what is causing you to hate your braces? Sometimes it takes a few times adjusting them for them to work out.

  7. #7

    Smile

    I don't hate the AFO, Jody, but it does somewhat puzzle me why they can't make a better mousetrap, you know? It is effective, tho......and I actually like wearing it because it gives me better mobility. The disdain...well, couldn't someone at least engineer it a bit better? I have the figure-eight strap for the ankle; seems like some other method could be employed. It's time for an adjustment, so I'll be seeing my orthotist soon anyway.

    My body is a mess, but I don't feel like I'm a mess, LOL. I am a joyful mess, trust me! I am at peace with what I have, but want to make the best of what it is. I'm just starting PT for trunk, lower body, balance, gait, etc. and will be doing upper-body work soon to balance and strengthen shoulders/trunk for future chair use and to make sure I have healthy posture and body movement from waist up.

    I think the only truly frustrating thing I've ever gotten truly angry about is that I look completely AB, and feel like when I'm out in public, I should be wearing a t-shirt that says, "Hey, gimme a second to get outta your way instead of mowing me over. I move slower than you because I'm blessed I'm not using my wheelchair today." (One good hard fall and it's over....again. With my level of degeneration throughout my entire spine and joints, it wouldn't take much, even wearing my TLSO). Has anyone else had that problem if they "look AB" but aren't? Man, people say "excuse me," then plow you down, knock into you (which, with a cane, you'd think they could see it, but I guess they just figure I'm old or something).

    Oh, gosh, I'm rambling again. I didn't get out of the house today, sorry. At least I have 4 warm walls to look at - we've had hard freezes for the past 3 nights with at least 4-5 more nights into the 20s and teens expected. And I live in sunny Florida!

    Margie

    Going to see the ortho on Thursday to get started on fixing the c-spine issues (didn't have issues til I was in an auto accident that also gave my husband compression fractures at T-10/11).

  8. #8
    Moderator jody's Avatar
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    yeah, I get walked on all the time. I dont know how you can appear to be ab, because I don't and also use two braces and a cane. I can stand and look normal or sit, but as soon as I move you can tell. I did get knocked over by a woman in the dr office. she was trying to go around me and disallowed enough distance for her hip. If there had not been a wall there I would have flew, but hit the wall instead. she did not even turn around but grunted in annoyence. I am always looking out for myself in that way. I do notice I get a lot more respect in a chair, but feel funny about using one since I can walk even if it is slow and cumbersom. How about a picture of the figure 8 thingy you were talking about?

  9. #9
    Member Draggin' Lady's Avatar
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    Sally,
    Have you been able to find out yet what is causing your neuropathic pain and other symptoms? I do hope you have been able to find out without the myelogram. How are you faring? I hope the New Year brings a good outcome for your new symptoms....

    Margie
    (formerly SeabeeMom)

  10. #10
    Hi Sally I have just joined this forum and wanted to write to you straight away to see how you are doing as your situation is quite similar to me.I really hope you got your leg pain sorted. I also was born with a tethered spinal chord and have diastematomyelia. My sequence of events vary from yours in that I had spinal surgery when I was 3 to try release the pressure on my spine and I then had to wear a splint on my left leg for 6 years as that is my bad leg. I had corrective surgery when I was 9 and all was well for awhile with just a slight weakness and limp. When I was 16 I started to experience exactly what you described constant stabbing burning and spasming in my left foot. I ended up having major problems and had 3 operations on that foot in 3 years the most serious of all was the triple arthedisis where they cracked 3 bones and reset them added some pins etc to try keep my foot straight. Things were ok for a year or two. I am now 26 heading 27 next month and lead a normal life went to college im working now etc.. But my foot has become totally deformed and it worries me so much.I also have flat feet etc.. I am in constant pain but I just have to get on with it because my doc says the only thing he can do for me now is amputate my toes which I dont want. So at the moment I have3 toes bent inward and a large bump on the left side of my leg. The docs hear do not come across many people with diastematomyelia so he refers to me as his strange case!!!! Obviously being young I hate this as cant wear any open toe sandals, slip ons, high heels, in fact I constantly hide my foot cos its so bad even on hols!! I know these things are silly but all this along with the pain is very frustrating and I was wondering how your leg is doing and what your doc has offered you? Also I feel like my right..the good leg is totally over compensating for my weak leg and I feel down the line I will have problems also. I know you started this thread some time ago but I was glad to finally find someone of similar age who might be going through something like me. If anyone else has any advice I would also appreciate it. Thanks

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