Hello all! I just had my shunt placed again, which has been the fourth surgery since 12-27-11. I had it placed, 6 weeks later the distal portion was revised, two weeks after that the entire thing had to be taken out, all due to infection, pseudocysts, and pleural effusion. Since this last surgery, I have been getting what feels like spasms very low in my pelvis. I went to my ob/gyn just to make sure it wasn't anything from that point of view, and was told it wasn't anything gynecological. Has anyone else had this pain? Has anyone found anything that helps it? Any help will be greatly appreciated!

Hey Rachel- Sounds like you've been through the ringer lately with surgeries. Your pain brings a couple of ideas to mind. First, have they ruled out recurring infection? Also, sometimes when an entire shunt is replaced, you can have a lot of residual pain because, even though it might not look like it on the outside, it is major surgery. I've learned that the marks on the outside of my body aren't a clear indication of everything that went on inside during the surgery. The third thing is that sometimes the distal end can get wrapped up along the diaphragm, causing abdominal pain. Are you also having pain in your collarbone/shoulder area? That's called referred pain and it's a sure sign that something is going on in the abdomen. I would see your NS to have them rule out any of the major things (infection, wrapped distal end). Good job ruling out stuff on the Ob/gyn tract, smart thinking! Good luck, and please keep us posted-this is a great example of how we benefit from each other's experiences.

Thanks so much for your reply! I have had 2 CT scans done, both showing that everything is normal. The catheter has moved, but the dr says that is completely normal and will move around whenever anything in my abdomen moves, such as the intestines. They drew blood and did a urinalysis and there does not seem to be any infection. My neurosurgeon does not want to tap the shunt, for fear of introducing infection if there isn't any, and causing *another* revision, which I completely agree with! They have given me valium for the spasm, which seems to help...but makes me soooo tired! I'm thinking, and my surgeon says it is possible, that either the catheter or something the catheter is touching, might touch a nerve every so often, causing the spasm. I'm hoping this goes away soon, I am so ready to get on with my life! I have had improved vision and fewer/ less severe headaches, so the shunt is working, and I am very thankful for this!

That makes sense that it probably is your catheter hitting a nerve, since you weren't having the spasms before it was revised. I, too, had trouble with the distal end moving (and wrapping around my diaphragm), so much so, that they decided to shorten it, so now it only comes down to the bottom of my sternum so it can't reach any organs. It has solved the problem. I hope the problem goes away for you. It sounds like you and your neurosurgeon are on the same wavelength which is really helpful, and unfortunately rare! Keep us posted on any developments, it's from people sharing their trials that's directly helped me.

Unfortunately, my neurosurgeon doesn't have much to do with any of it except the actual surgery. It's the general surgeon who's on the same wavelength, and I'm incredibly thankful for him! The pain has not changed any yet, still having spasms, but it will only have been 6 weeks since the last surgery on Thursday, so I'm hoping it will still go away. After all these complications, I'm terrified to let them do anything, even prick my finger for fear of infection, so I'm very scared that they will decide to shorten it and something will go wrong. My neurosurgeon has said if he has to take it out, he will not put another one in (he's quite pompous and uncaring). But right now, everything besides the spasm is healing great!