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Hi Pam,
Wow - you really went through the works at 10! I've not heard of such severe spontaneous hydro so early. Glad the VP's serving you well
I've got no idea what model I have, but I've only ever had one trouble with it (when I was a couple of months old), but that resolved after a few hours. I feel SO lucky because I know a lot of people who have myelomenigocele + congenital hydrocephalus who've had just so many problems with malfunctions/extra surgeries/infections/needing 2 shunts/learning disabilities from extended high pressure, etc..
As far as I know, the hydro that (often) comes with myelo/SB in general is actually considered acquired rather than congenital...but yes, I've had it since (before?) I was born. No idea whether it's comm/non. One of these days, I *really should* get a copy of my medical records - though I hate to think what those postage costs would be LOL
I completely missed your tubing on x-rays till now - I'm used to seeing what looks like mile curling around my abdo, lol. Apparently, my neurosurgeon said he'd given me enough to grow at least to a 6 foot 100 yr old without the need for extension surgeries
I'd never even considered the tubing splitting - but good to hear that shouldn't be a problem! I do seem to have scar tissue holding it tightly on my collarbone so I can't stretch my neck right up properly (doesn't help with scoli-related neck probs!). Might get that attended to next year, been meaning to.
Anyhow, much thanks for reassurance that we're fairly safe. I don't need any more ways to get infection - even my dentist [check for loose teeth or other probs, pre-op] yesterday said, "glad you're teeth are clean. Keep that up well. You know, not brushing properly allows the bacteria to multiply & it is possible for them to enter the body & migrate. You probably don't want them getting aboard your new metal." Oh, REALLY?! Thanks, doc.
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Shell, I'm so sorry to have momentarily side-tracked your thread
I hope you can get things sorted soon. Keep us posted - take care.
Wow - you really went through the works at 10! I've not heard of such severe spontaneous hydro so early. Glad the VP's serving you well
I've got no idea what model I have, but I've only ever had one trouble with it (when I was a couple of months old), but that resolved after a few hours. I feel SO lucky because I know a lot of people who have myelomenigocele + congenital hydrocephalus who've had just so many problems with malfunctions/extra surgeries/infections/needing 2 shunts/learning disabilities from extended high pressure, etc..
As far as I know, the hydro that (often) comes with myelo/SB in general is actually considered acquired rather than congenital...but yes, I've had it since (before?) I was born. No idea whether it's comm/non. One of these days, I *really should* get a copy of my medical records - though I hate to think what those postage costs would be LOL
I completely missed your tubing on x-rays till now - I'm used to seeing what looks like mile curling around my abdo, lol. Apparently, my neurosurgeon said he'd given me enough to grow at least to a 6 foot 100 yr old without the need for extension surgeries
I'd never even considered the tubing splitting - but good to hear that shouldn't be a problem! I do seem to have scar tissue holding it tightly on my collarbone so I can't stretch my neck right up properly (doesn't help with scoli-related neck probs!). Might get that attended to next year, been meaning to.Anyhow, much thanks for reassurance that we're fairly safe. I don't need any more ways to get infection - even my dentist [check for loose teeth or other probs, pre-op] yesterday said, "glad you're teeth are clean. Keep that up well. You know, not brushing properly allows the bacteria to multiply & it is possible for them to enter the body & migrate. You probably don't want them getting aboard your new metal." Oh, REALLY?!
Thanks, doc.--
Shell, I'm so sorry to have momentarily side-tracked your thread
I hope you can get things sorted soon. Keep us posted - take care.
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