Little Luca
Senior Poster
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Whatever it takes
Posts: 346
Somerset West, South Africa
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Hi Ciba
Yup, sounds very familiar and can be quite scary to see. It's called a pseudomeningocele and is apparantly not that uncommon. Luca developed this same phenomena after her surgery, also at 13 months old.
Our first attempts to get the spinal fluid re-absorbed was to get her a beany/skull cap type thing originally for children with eczema. It goes over the head down past the ears and around the bottom of the chin so only her face was visible. It kind of looks like the thing astronauts put on their heads before putting on their helmets. We actually used to call her Cosmonaut Luca when she was wearing it. Anyway, this cap put only a very little bit of pressure on the pseudomeningocele and didn't do the trick.
We were quite desparate to get home to South Africa and this pseudomeningocele was delaying us. Had this not been the case, perhaps our surgeon would have suggested we persist with this non-invasive method.
Be this as it may, he gave us 7 surgical options to sort it out. I don't remember all of them, but after further discussion we decided to go with the option whereby he tapped into the spine near the lower back and ran a small tube from there to Luca's stomach subcutaneously (under the skin). This tube would drain the spinal fluid from her spine, therefore reducing the build-up at her surgery site, into her stomach and from there it would just pass through her, as does any waste product.
This worked very well. I don't remember exactly what the timing was, but after about a week the pseudomeningocele was gone.
Luca has a small scar near the bottom of her spine and one just to the right of her stomach where they inserted the tube, and the tube is still inside her but you would never know this from just looking at her. The doctor said there is no reason to take it out, but if we really wanted to, it can be surgically removed.
Our doctor was never overly concerned about her developing this pseudomeningocele and was always very positive that we'd sort it out and that it happens in a number of cases. I know how worrying it looks but I believe it's very fixable if it doesn't sort itself out.
I have photo's of Luca in her cosmonaut disguise if you would like to see what the thing looked like.
I see our daughters seem to be very similar cases. Luca is now 15 months past surgery and doing incredibly well. She still suffers the residual effects of her strokes which is mainly the weakness in her legs, she is struggling to walk but is getting stronger all the time. She's also recovered considerably from a number of other effects from her strokes.
My best advice to you right now is to give your daughter time, don't expect too much from her too soon.
Take care Mark (Luca's Dad)
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