6 replies to this topic

[Billy's Mom]

My 12 y.o. son had his first implant last July (2005) and swelling began almost immediately and never went back down after bed rest. They did the blood plug fix in October 2005 and it swelled again and then the cerebral spinal fluid began leaking from the pump site and the site in the spinal area and the pump was removed.

He just went in for the 2nd implant in May. It has swelled but has gone back down with rest. How long do we have to wait until it settles in?? It was implanted on May 22nd - so it's been a little over 3 weeks.

We are all disappointed because it really does work for him. He had a stroke when he was in kindergarten.

Thanks in advance for any advice.

Chris, Billy's mom

[Billy's Mom]

Update:

We had to go see the surgeon regarding the swelling. He drained the site on 6/15 (the same day I made my first post).

Then on 6/19 the cerebral spinal fluid started leaking from the stitch site (stitches were taken out 2 weeks ago) so we went in and doctor put a few more stitches in. It's been two full days and so far no swelling or leaking. We keep hoping this time it will work.

Thanks for listening

Chris, Billy's Mom

[Billy's Mom]

Update #3:

Started leaking cerebral spinal fluid on June 23rd. Had surgery on 25th. Surgeon checked catheter in back and front to make sure okay. Due to all the previous surgeries he removed scar tissue and pulled skin up (almost like a tummy tuck). Came home from hospital yesterday. We'll see. We're just hoping this works!!

[Lillehammer94]

Spinal leaks can be torture because of the headaches. I hope that things are working well now.

Gretta

[Joed]

I know next to nothing about IBT, but wanted to pop in here to let you know I'm sending positive thoughts Billy's way. I hope he gets good results. Please keep us informed.

[Apparelyzed]

Hi,

The most common cause of a CSF leak is when the seal between the tubing and the hole going into the spine has not sealed properly.

The first sign of a CSF leak is a collection of fluid around the scar site on the back. When tapped with a finger, it has the appearance of the skin rippling and feeling spongy.

The second sign of a CSF leak is of swelling around the pump. This is due to the CSF back tracking along the tunnel which the tubing passes through from the pump to the spine. Swelling of the pump due to CSF is also associated with a headache of varying degrees.

CSF leaks can be limited by 5-10 days flat bedrest post surgery, followed when the patient is upright by the patient wearing an elasticated binder which covers the pump and scar site on the patients back.

CSF leaks can be plugged by a blood patch, and once the blood patch is performed, the same caution should be taken as if the pump has just been implanted.

Hope this helps

Simon

[Billy's Mom]

Thanks everyone.

Billy is doing very well - no more swelling. Just waiting for the stitches to come out next week. The no swimming is torture for him right now. We let him ride his golf cart around yesterday and that seemed to appease him. We're hoping just another week or so after stitches come out before he can go swimming. He starts summer camp this week so that will keep him occupied.

The bad thing about not being able to be very active is that when they upped the baclofen he didn't have the tone to help keep him upright. So he's fairly weak right now and we'd love to do some stretching but we're so afraid we'll do something to the stitches.

Does anyone out there have good exercises (once stitches are out) that help with strengthening the leg muscles (focusing on inner and outer thighs)? He scissor walks right now (has calluses on the inner knee areas) and his right foot pronates in while walking. Unfortunately, he doesn't do well in AFO's - he complains that they hurt (which in 12 y.o. language means he hates wearing them). He'll continue with PT but I know there is something more we can do at home. I'm assuming walking in the pool will help as well.

Thanks for any advice.