Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting seconds, pulse synchronous tinnitus (a "wooshing noise" in the ear), and double vision.

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Shunt tubing question

Hi all
I have a question maybe someone has had the same issue and can give me some insight.

I had the VP shunt put in 2 years ago Feb. and since then have had 3 revisions because it keeps clogging at the shunt sight and is again clogged.

Almost immediately after the shunt was put in I started having severe upper right abdominal pain and ended up in the emergency room. They said it was not the shunt but gastro something or other. Anyway this had not gone away over the last 2 years and has recently gotten much worse and now includes horrible bloating along with the pain. I went to my GI doc and she ordered a CT scan of my stomach. On the CT scan they could not find the end of the shunt tube and is now sending for surgical reports so that she knows where its supposed to be.

Has anyone with a shunt ever had this problem???

I spoke with my neuro today and asked him if for some reason the end of the shunt tube is obstructed (stuck somewhere it shouldn't be) and was unable to drain wouldn't this explain why it keeps clogging up within 3 months of every revision?

Thanks everyone



Hi deb, I wish I had a straight answer for you , but don't.
I have a VP shunt, going on 3 years now, and have never had a revision. ( Perhaps because I didn't know any better?)
That is not to say I have been with out problems with the shunt

But from what you are saying, some thing has really gone wrong.It does sound to me that the catheter part has lodged to some organ, where it should be free floating in the peritoneal area. (I have seen this on a cat scan) But a cat scan should be able to show this. I am not sure but I think, if it is not where its suppose to be, then how can it function properly?
Are they now suggesting a laparoscopy to see what is going on?

About the pain in your side post op. Could this have been what a lot of us suffer from? But no dr will ever admit to it? That the body sees the extra csf, which is now being flushed in to the abdo area, as a foreign body and fights it? In time, it usually settles down, but can take months. I still know when a big flush is occurring and have pain. All this time later but have become use to it.I was also hospitalized post op twice with this pain. With no real explanation from the drs.

I also know, a few peoples bodies never learn to accept this.

The best of luck with the next tests, and hopefully, an end to all your pain. Keep in touch and let us know how you get on. Cath.

Thanks Cath for your reply, The GI doc couldn't see the end of the shunt tube on the CT so she was sending to the surgeon to see where its supposed to end I guess they will go from there. I'm seriously thinking of cutting her out of the pic and calling the neuro surgeon and the General surgeon that did the stomach part and get to the bottom of it. I know that my shunt is clogged again as only us with them know.

I have to agree with you on the body fighting the CSF fluid and when the body fights anything it causing inflammation hence the massive bloating I get along with the pain. Anyway I will update when I get an answer.


Hi Deb,

I have had very similar problems. My first surgery resulted in an infection that landed me in the hospital for 33 days straight. During which time my shunt was removed. After replacing the shunt, it plugged due to scar tissue in my peritoneal. It kept happening and 3 revisions (laproscopic peritoneal surgery) later it was decided by my NS and general surgeon that my peritoneal was not a good place to send my CSF so I had another surgery to convert my VP to a VA. It now goes in to my heart. I no longer suffer from the peritoneal pain and have not needed a revision since.

My shunt is now working too well to the point my ventricles seem to collapse and re-inflate from time to time. I am not 100% HA free but 1-3 days a week of HAs is far better than 24/7.

I would definitely go back to your NS. Every time mine was blocked, all my symptoms came back. After each revision they all went a way.

Good luck.


Thanks TJ
You have described my symptoms exactly, every time they do a revision it works for 2 to 2 1/2 months and then clogs again. They are putting me through all these GI tests and I know in my heart that all the pain is from the shunt tubing. This all started right after the shunt was originally put in. But geesh getting them to listen to me is another thing. I guess one day they will figure it out and in the meantime I suffer not only with the daily HA but with the massive bloating and stomach pain. I will not go through another revision until they figure it out.

On another note I'm thrilled that you have finally found some relief and answer to all our prayers.


Hello Deb,

My name is Lori, I was DX in 2005 had a PV shunt placed in 2'07. i had to have a revision in 4'07 due to severe abd pain. the tubing was to long. Ea time I walked i was in pain. they had to shortened it. in 2'10 i had another revision as the tubing could not be located. i had to have xrays (shunt series) done along with CT and MRI's. Some how it got pulled up into my chest so I had to have it pulled back done. Just Monday i had my third revision. Headaches never really went away just got a little better. i was taken off the diamox and lasix 2'10 headaches got worse. i am back on Lasix and told with this revision i will see some relief. if this does not work my NS states he would recommend the removal of the PV shunt and placement of a LP shunt. IDk... Neck, head, shoulder pain is real... along with blurry vision at times and ringing in the ears. do you experience any of this???? also a personal question for you women out there...I hope you don't mind me asking but there is no one else to ask... when have intercourse I bleed, this can't be normal can it????
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