Discussions By Condition: Brain conditions

Problem with my VP shunt

Posted In: Brain conditions 3 Replies
  • Posted By: Millymax
  • February 25, 2007
  • 00:25 PM

Has anyone had this problem?

I had a VP shunt fitted about 14 years ago and have had no major problems.

But last year I started to get sore areas in my chest along the route of the tube. In some places there were tender swellings.

Well, you can imagine, I got a bit worried. So I went to see a neurologist who was lovely, but hadn't a clue.

There were no signs of brain infection or inflammation, so he said that it could just be local infection around scarring in the shunt tube track.

And the nasty sore feelings went away -- but they keep on coming back, every now and then.

If anyone can shed some light, here, I'd love them forever!

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3 Replies:

  • Hi MillyI totally understand the feeling! Had the brain hemm. right after 9-11, (I live in New York) They put the shunt in after a month, in my lower intestine. Pain was really bad for about 6 months. Finally figured out that it was the shunt. So they moved it to my stomach. One day out of hospital and I passed out in a restraunt....went back by ambulance. So they put it in my plural sack (the lining outside the lung. I came out of surgery unable to breathe without the feeling that a knife was in my lung. After a week of hospital and lots of morfine, I went home. The pain hits me when I try to get up in the morning and it is located exactly where I can see the shunt in the xray. The only way that I can walk and breathe normally is to drink a few shots of vodka and lay very flat , on my back for 1/2 hour or more. On bad days this can go on for hours, but its the only way that I can work. The pain affects my right arm, can't use it. I tried the strong drugs that my Dr. presribed and it has no effect except to make me feel stoned. I'm really not a drinker! My daughter was visiting me and saw an attack one morning and suggested that we try using alcohol in case the tube was creating some type of spasm....and it worked! Don't really know yet what I can do about this shunt. I see a new neuro surgeon this week. Hope and pray that I get some intelligent answers from her! The last Dr. kept telling me that it was very unusual for this type of shunt to cause a problem. Hmmmmm? So anyway, I will write again if I find out anything. In the meantime I hope that you are feeling well.......and if not, you should complain and insist that it is NOT normal to feel pain from your shunt and they should FIX IT!!! Good luckMichele
    Anonymous 42789 Replies Flag this Response
  • Oh, good Lord, Michele, that's a real horror story! I don't know how I dare complain compared with what you're going through.You know, thinking about what the doctor said about not having problems with that kind of shunt, I don't reckon they know as much about things as they'd have us believe. Obviously, no one's going to say 'We're going to put this contraption inside your body -- we don't have a clue what's going to happen -- but, hey, it'll probably be all right', are they? BUT -- and I think it's a Very Big But -- they could listen when something happens, admit that they've got to look into it and then do just that. If I've been worried about something, I've always had the feeling that I'm moaning about something minor and I should shut up because I should be grateful I'm alive and functioning.Whoops -- bit of a rant there. Sorry. But do you know what I mean?I'm STILL waiting to see the neurosurgeon. But I've had a few hints from people about my pain/uncomfortableness. A lovely lady at ASBAH (Association for Spina Bifida and Hydrocephalus) asked some of their members, and the suggestion of adhesions came up. (Might have already mentioned this? Having a bit of a vague day!)Don't think your problem sound like adhesions, though, do you? And very interesting about the different effects from drugs and alcohol. When you find out what on Earth's going on, do let me know!Best of luck!!WarmlyMM
    Millymax 5 Replies Flag this Response
  • Hi Milly Still nothing encouraging to report. The plural sac that surrounds my right lung (where the shunt lives) is now 3/4 filled with the fluid from my brain. I feel like I'm drowning! My pulmanary Dr is thinking of draining it next week. I saw the new neuro surgeon last week and he said that the shunt wasn't working properly, doesn't know why it causes such pain and that we should try a temp removal of the shunt to see if I still require it and if I still need someting artificial to remove the CP fluid, he would like to do a "third ventrical sugery" on me. I won't upset you with the details but it begins with drilling a good size hole in the top of the head...........................no way! So I am spending hours a day researching shunts, hydrocephalus, etc. for some answers. I sign on to med sites as a med student. That way I get to read articles from med journals that have a lot more detailed info than consumer sites. Right now I'm looking at silicone allergies (the shunt tube is made of silicone). I thought that was the problem after the first surgery, but the neuro told me that there was only one type of tubing available....that was a big lie. Anyway, I don't plan to have any real surgery done until I am satisfied that I understand (as well as I am able to) what the problem is with these ***n shunts and how to best solve it.Thanks for the tip about theASBAH, I'm going to check it out right away! Please, never feel ashamed of complaining about your pain! I never find that it helps to relieve the pain , to think of others who suffer more, but it does help to see that sometimes people who have greater problems than me will still have the strength to fight for thier right to the best care and not to take "we don't know" for an answer!Hey, if you find the time, please write back and let me know how you are doing and if you have found out anything more about this strange pain/ Thanks, Michele
    Anonymous 42789 Replies Flag this Response
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