I'm sorry you are having problems Angie. This has not been a fun ride for you. You said the doctors suspected you may stop absorbing the fluid? Did they think it might be due to the location of the catheter or that you may just be "rejecting" it?
My doctor thought that could be going on with my belly right now, that I might not be absorbing the fluid. I also have the puffy spot on my back, so it could be backing up, leaking or something else. I had a long series of X-rays but I get a ct scan Monday with contrast to see where the fluid is going. I had also been having cramps and puffy tummy. But really not sore to the touch. Keep an eye on your temperature.

One thing that is frustrating is my surgeon tried to get the ct scan the same day and insurance told them 1 week. Idiots. Had I gone to the ER with these symptoms chances are they would have kept me and done the scan last week. Something to think about ;)

I just told early on that sometimes that does happen but to never take a chance always ,always call ! I don't think it's that much at this point to call yet and trying to ride it oout hopeing it will stop.If it don't by 2morrow I will call him.

I go through this every time after a adjustment... it's just this time it's been alittle longer ....

Almost feels like there's pulling around the scare tissue ???
Behind my eye feels alittle funny to. Still on the Diamox to see if that wont help drain some of CSF I'm not sure if it's location .... My shunt is inserted into the lower spine wraps around the right side and at the end of this is the valve that is about the size of the eraser tip and aprox 12 more feet of tubing that runs downward like L shape and that tubing falls into the lower pelvic cavity freely...

It seems like it's possible the csf seems to be absorbing slower but i'm not sure.I tried to look and the link you posted on your shunt and could not get it to pull up.... I wanted to see what it looked like !

I'm in a mad dash to figure something out , I'm running out of time and want to bring something ,anything I can find to the table for both Doctors,sorting through options ! It's not poss for me to have the VP shunt ... )-;

I will keep an eye on my temp Thanks !

Sucks you had to wait on the CT, I think I have masterd the ER thing when to go when not to or at least I hope so ....

Both my docs are great ! They take no chances with me,never secound guess and send me right in so with that I'm very lucky !

Thanks again and hope all goes well w/ ur CT ANGIE

First I must say that it's ironic you had your LP shunt placed on a 9/22, because that's when I had mine placed (only in 2011).
I had issues with my LP shunt as well, when I would walk I would get cramping and pain in my abdomen and my side. I don't have my LP shunt anymore, but I still get the abdominal pain by the scar (probably scar tissue). When I did have the shunt, I would receive relief when I used the restroom, then a weird "tickle" feeling that went from the top of my diaphragm to my pelvis area. I think my body was not a fan of the CSF. It even said on a CT scan report that I had a pocket of fluid in my pelvic area...I assume it was CSF that hadn't been flushed out yet. When my surgeon taped my shunt he could not pull any fluid out of the valve. It turns out my shunt was kinked, but I also had been over drained. Now my spine was over drained, but my head wasn't. That is why I had to have a VP shunt placed.
I am sorry you are having problems with your shunt after only two years (and all through out those two years!). I hope they find what is causing you such terrible pain and discomfort.
Hugs,
Mallory

My shunt is called an H - V Shunt (horizontal - vertical) and you could google it. It is not adjustable but works by a like a self adjusting pressure valve. I have not had any low pressure headaches or problems when I stand or anything like like. My head feels a little wonky and i can really tell in my eyes while reading and using the computer, so I assume there is some sort of back up going on. I do still get pain in my side, mine is especially after I eat or drink, like a ton of belly pressure on my diaphragm. Could be scar tissue, doc said tube could be shortened. Why is it so long in the first place?? Could be a fluid pocket causing pressure. I walk slow. I get a pain when I step down on my right side, also my surgical side. I've lost weight since the surgery, about 10 pounds now, because it hurts to eat and I usually don't have enough energy or will to make myself something. I know you have to eat to heal so my husband stocks me with easy to eat stuff, fruit, yogurt, nuts.

Mallory, where is your new shunt draining and do you think there are any problems with that?
Hugs ladies,
Amy

9/22 maybe that's just not a good date at all lol... on another note ...

Thanks Mallory (; After going to the bathroom it does releave it but only for a few mins. crazy I know, It's like there's so much fluid that even going to the bathroom is not enough .... I've not really had alot of pain around the incision site other then post surgery and here and there ... the normal pulling feeling . Thats why I'm thinking something else is going on it just don't feel normal and has gone on to long. I will see my OP 2morrrow and I;m sure he will send me for x-rays to see whats going on. so maybe I'll have answers tues..

Mallory do you think if indeed it had a kink in it it would poss back up csf in my head I would surely feel that right !

thanks Amy I wanna look yours up see what it looks like and get some info on it !

TY GUYS xxxx ANGIE

Well let's keep each other informed because we have some of the same symptoms. I get my ct scan tomorrow and an afternoon apt. With my NS
Good luck with your appt!
Amy

Yes Indeed Magna let's do I'll let you know how things go and you do the same , They say 2 heads are better then one (:

Hi Angie,
Well I had my ct scan today met with my surgeon. Not good news. It appears my catheter has pulled out of my abdomen and is around my side somewhere. The fluid is probably not absorbing there and I have cramping and puffy tummy, and bulge on my back where it is backing up. Yesterday the bulge went down but I was dizzy and a little headachy. I woke in the middle of the night with the worst headache I've had in a very long time. Norco didn't even touch it. While at the hospital getting tests, etc. my back puffed back up and the pressure eased up on my head.

I am scheduled for surgery next Tuesday. They can't do it before that because I have been taking ibuprofen. They will go back in both incisions and try to redo it and get it back in position.

I am so sad :( I guess this is about the worst news. The surgeon will try to do minimal body damage as most of my pain during recovery has been in my side, ribs etc. from the tunneling. I am running out of time to heal back up before school starts. This certainly isnt how this summer was supposed to turn out.

Let me know what your doctor says. I hope you have some better news.
Hugs
Amy

I had a couple of issues going on with my LP shunt (we didn't know that fully until I went in for surgery). the only two tests I had done pre op was a regular CT scan and my NS taped my shunt- their was resistance when he tried to pull fluid out. Normally when he tapes shunts he said "they should be flowing with ease". He did not talk to me after the surgery, he only talked to my mom. My mom just informed me that my shunt was not on only kinked, but scar tissue that formed around the end in my spine was "blocking proper flow" and when he went to stick a new LP shunt in the shunt wouldn't flow because I have very little CSF in my spine.
So...there was a lot going wrong with me. Depending on the size and severity of the kink it may still flow, but only patricianly. It would be like you slightly kinking the hose in your yard. Water would flow out, but not at much and not at the same pressure. The kink was at the tip in my abdomen. That, along with scar tissue holding the shunt in place, probably caused the prolonged agitation in that area. I felt as if I was getting a stitch in my side where the shunt was, only it was shunt irritation and pulling ( at least that's what I think it was).
I would go to the bathroom and feel better, only to have it get worse again. My shunt failed after three weeks (we didn't know until four months). I kept telling my surgeon I was having headaches and he kept adjusting my shunt until it was wide open and I still complained of high pressure. I esencilaay did have high pressure, in my head rather than in my spine. When I shunt failed it felt like slowly all of my pre shunt symptoms came back only I felt a little better (the fluid that did drain was probably what helped it that slight bit). I was told to go off of meds and I was not to return taking Diamox. He didn't think it would help is what he really meant (he told my GP this). So..I started to take 1,000 mg of Diamox again and it helped. Do what you think is going to help you.
Sorry for the long message!
I had a vp shunt placed on 1/29, so maybe that's a lucky day! So far it's working pretty well :) haha I laughed when you said 9/22 must not be a good day for shunt surgery...at least not LP shunt surgery!
Best to you Angie!
Mallory

I don't know if this will help you. But I hav both an LP and VP shunt. And right after they were placed I had horrible cramping and stinging in my sids and abd. And from time to time I still get it. I finally was told by one of my doctors. That the fluid creats pockets in the walls and becoms trapped. This creats the cramps and burning. And i have noticed a pattern. When the preasure gets rally high with in a few day I will have the cramps.