I found out last week that I have a CSF leak resulting from my decompression surgery on March 28, 2012. I am scheduled for surgery to have it repaired on Wednesday. I can’t seem to find any information on just what to expect the 2nd time around. Will it be as painful? Recovery time? Etc…I would love to hear from anyone who has gone through this experience. I’m quite overwhelmed.
Fsusan,
How was the CSF recovery compared to the original decompression surgery. I’m extremely nervous. My first 10 days post decompression were very rough.
Thank you for sharing,
Kathertn
Susan J said:
I went a very long year before they attempted to repair my CSF leak. I had a shunt and a shunt revision. The CSF repair surgery was the easiest out of all the surgeries. I was back to work and feeling great in about 3 weeks (half days). I felt wonderful especialy because the positionally headaches were gone and I could finally be upright without feeling awful.
Susan J
The Dr said the facia was completely separates but said nothing about the patch. Is there a difference? I do know that this hasn’t happened to one of his patients in over 20 years.
Susan J said:
My doctor put in a lumbar drain which meant I was in the hospital for 5 days. The purpose was to control the pressure and gradually increase it so not to put and stress on the new patch. The lumbar drain wasn’t bad just a nusiance. You had to lie flat at certain times so not to createt that “pulling down” sensation and risk herniating your brain. I was on IV pain meds for the first 3 days. Then they put on a Flexerial patch for days 4 and 5 along with pain meds by mouth. I didn’t really feel like I needed them. I took pain meds sporadically for the the 3 weeks following. I mostly needed them for car rides. (I live far from the doctors offices).
My first surgery was really rough too. I was about 6 weeks post op when my CSF leak was discovered. I also developed hydrocephelus (there was NO evidence of hydro before my decompression surgery). The CSF leak turned into a large psuedomeningecele. I was told that having a shunt put in was the easiest and as effective option. I was terrified of repeating the surgery I had just had so I picked the shunt. A year later and a new NS determined I never needed the shunt. If I had it to do all over I would just repeat the decompression surgery and fix the patch. I first had a synthetic patch. It was shredded around the edges. The second time I had a bovine patch.
The NS that fixed my CSF leak said that the decompression revision was faster and was a quicker recovery because they don’t have to repeat all steps of the surgery. Out of all the surgeries, the decompression revision was by far the easiest. I hope this is standard. I would ask your NS what he is going to do to prevent the new patch from leaking again. I got a copy of my records (just so I had them). He restiched the edges that he could of the first patch then put some surgical glue. He then put on the new bovine patch and then more glue and some other adhesive. I remember reading the surgical notes and laughing thinking the only thing he didn’t put in there was duct tape!
I would just ask your NS what steps he is going to take try and prevent this from happening again. Also ask what you can do to prevent this from happening again. I was on a light duty no lifting anything heaview than 10 pounds for about 3 months. That was the hardest because I really did feel better. I would have to constantly remind myself to be careful.
I hope you find relief (and soon) and peace of mind in having surgery again.
Susan J