[yearsinpain]

heres the situation upon having a shunt replacement i began having pelvic pain. it has affected my life to the point where i cant even function. there is extra slack in the tubing that if removed may fix my pain completely because the bottom portion would not be near the nerve responsible for creating such pain.

is it possible to get them to shorten the tubing or am i stuck this way?

[Kitt]

Welcome yearsinpain.

Someone will be along to help.

[pogo]

Originally Posted by yearsinpain

heres the situation upon having a shunt replacement i began having pelvic pain. it has affected my life to the point where i cant even function. there is extra slack in the tubing that if removed may fix my pain completely because the bottom portion would not be near the nerve responsible for creating such pain.

is it possible to get them to shorten the tubing or am i stuck this way?

If you can't function... what options does your surgeon suggest when you bring this up? I know some people talk about needing to wait, and waiting can help some things (sometimes waiting has helped but I would be more than pushy when quality of life tanks), but is your surgeon really listening to your story? I don't know if they can shorten the tubing for you. I know they put a boatload of tubing in my daughter so they won't need to lengthen it, always looped around in her lower pelvis on those shunt series, she won't be needing it all, but ymmv. So your surgeon needs to give you the explanations and options, but that's assuming your surgeon listens to your issues.

[yearsinpain]

Originally Posted by pogo

If you can't function... what options does your surgeon suggest when you bring this up? I know some people talk about needing to wait, and waiting can help some things (sometimes waiting has helped but I would be more than pushy when quality of life tanks), but is your surgeon really listening to your story? I don't know if they can shorten the tubing for you. I know they put a boatload of tubing in my daughter so they won't need to lengthen it, always looped around in her lower pelvis on those shunt series, she won't be needing it all, but ymmv. So your surgeon needs to give you the explanations and options, but that's assuming your surgeon listens to your issues.

my surgeon is in cover his butt mode saying the pain isnt from the shunt. i have seen multiple physical therapists that focused on mobilizing scar tissue and they have said to me that the location of the shunt tubing in some areas hits a nerve that can cause pelvic pain.

[Rynohanley]

Originally Posted by yearsinpain

my surgeon is in cover his butt mode saying the pain isnt from the shunt. i have seen multiple physical therapists that focused on mobilizing scar tissue and they have said to me that the location of the shunt tubing in some areas hits a nerve that can cause pelvic pain.

Hopefully you've reached a solution by now, but if not:
I experienced what I referred to as the pull/punch/stab. Depending on my movement, it would suddenly feel like someone was pulling down hard on my testicles, punching my stomach, and stabbing my perenium. It was crippling. I had 15mm cut off of the tube, and the pains disappeared.

[annakkro]

The tubing is what is causing your pain. It is rubbing up against your phrenic nerve which serves all the organs in your peritoneum. This happened to me, and it was there for 9 months before NSG finally admitted that it was causing the pain and shortened it. Unfortunately, because it was wrapped around my diaphragm for so long, I have lasting nerve damage and from time to time it feels like it is still wrapped. Do you also have pain in your collarbone area? This is called referred pain and it is also from the tubing.