Diastematomyelia - progressive??

[Mustang Sal]

Hi all, just a quick question - would anyone consider diastematomyelia to be a 'progressive' condition? I won't bore you all with the long convoluted story, but during a discussion at a hospital orthopaedic spine clinic last week regarding a suitable surgical procedure for my painful spine, one of my surgeon's colleagues said he wonders if my pain and increased disability is down to 'natural progression of the spinal cord abnormality'. Now, I was always under the impression that NTD's are *not* progressive, so what could this guy mean exactly? I didn't feel able to question him on it much as I just didn't like the guy, but I just keep wondering what he's getting at. I am seeing a neurologist on April 19th (I know that's not the same as neurosurgeon, but the nearest neurosurgical service is at another hospital, 60 miles away, so it's the best they have here, plus I was rejected as a surgical candidate by the ns there a year ago, despite the fact that he never actually saw me in person, and since then my pain has got dramatically worse) so I hope he could perhaps shed some light on this, but in the meantime I thought i'd ask for your opinions on this. Cheers :)

[LisaJoy]

I think cord tethering can be considered progressive -- the longer there is tension on the nerves, the more damage they can sustain. There's also some stuff I don't understand about "hypoxia" -- meaning that some of the damage caused by tethering results from the tension on the cord interfering with blood flow and oxygenation.

The purpose of detethering is to stop that progression.

I feel so bad for you, Sally. It just seems to me that that extremely progressive symptoms like yours warrant surgery -- if I were you, I'd welcome a little nerve damage in exchange for pain relief, even if it meant permanent mobility limitations.

[Mustang Sal]

Thanks Lisa :)

Until last Friday I was all set for and had started to get my head around spinal fusion surgery - T10 to sacrum, which is a big job I know. It got a little scarier when another surgeon said they'd have to use iliac bolts for stability and they would go through the midline of my back, meaning i'd have to have my 26 year old scar excised (because it contains several sinus tracts and has tethered to surrounding structures) and a 'flap' created by a plastic surgeon. Apparently decompressing my L4/5 nerve root is a bit too 'technically challenging' given my strange vertebral anatomy, so they figured that fusing me right the way through (without straightening out the scoliosis) would relieve the pressure. I was just starting to process all this when this other surgeon waltzed in (and didn't even shake my hand, which is just rude in my book) and said he wasn't convinced surgery will help me, and that it's too risky, hence why I am now booked in to see the neurologist. Apparently his findings will determine whether or not my surgeon will do the op, so i'm feeling really anxious at the moment. Of course I don't *want* the surgery - who does - but I will grasp at anything if there's even a chance it will reduce the pain by even 50%, so I can get off morphine and back to work. I know my surgeon really wants to help me - we've known each other for the best part of 14 years - and said he's never before seen me so miserable. The last operation I had was risky, they weren't entirely sure what was causing the pain, said it might not cure the pain or would even make it worse, etc etc, so i've been here before. But it *did* work last time - I had faith in him then and I have faith in him now.

Anyway, getting back to the original question about progression, yes, perhaps he does mean tethering. The thing is, as far as I know my cord has *always* been tethered at around L4 but i'm not entirely sure how it is tethered, because the bony spur was removed when I was 3 but at some point since then it has regrown. Did I remain tethered even after the bony bit was removed? Possibly, because I still grew up with leg weakness and foot deformities. What i'm trying to say is how can a long standing tethered cord suddenly start acting up again? So far no-one has mentioned removing the re-grown bony spur or detethering my cord, maybe because this isn't even possible.

In any case you're right, I would exchange this pain for more nerve damage, but surgeons have to think about their reputations - if I get paralysed by the surgery, they leave themselves open to litigation despite having obtained informed consent (suing is not something i'd ever even think of, let alone carry out, but not everyone thinks like me sadly). As you can probably tell, it's all just such a mess and it's messing with my head - it's all I can think about right now :(

Sorry for the long reply, but thought i'd try to give you the whole picture so you see where i'm coming from. Thanks for your reply anyway :)

[n3rdchik]

Sally,

Major hugs and sympathy. No one should have to live with chronic pain :(

I am of the opinion that TCS is progressive (in layman terms, it causes worsening damage/symptoms in most cases), but the medical definition is worsening damage/symptoms in almost all diagnosed. I would badger the surgeon to tell you what it means...

You deserve answers. I would write it down a list ahead of time and then make sure you understand it. I would also ask for copies of the notes in your files.

[Avocado Baby]

:happy065::happy065: Lots of these for you Sally. I really wish you weren't suffering like this xxxx