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 LP Shunt and spinal pain

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medmisfit
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PostSubject: LP Shunt and spinal pain   Fri Jun 10, 2011 9:22 pm

LP Shunt and spinal pain

I've had this shunt since 2002, but I've had unexplained pain since implanted. It started in the back of my head/neck and has now traveled down my spine. Most of the time it feels like someone punched me between the shoulder blades, but it expands w/ my headaches. I've seen three neurosurgeons and had every test imaginable, but they can't find anything. They've all said the pain is probably from the pull of my shunt, but don't want to move it because it's managing my vision/IIH. I know some people have suffered nerve damage, so I just wondered if anyone else has had similar experiences and what you've done about it. I would really like to figure it out BEFORE there's permanent damage, so any information about diagnostic tests, etc would be very helpful.

Thanks,
Julie
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Heidi
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PostSubject: Re: LP Shunt and spinal pain   Fri Jun 10, 2011 11:01 pm

I had the same thing with my LP shunt, and in the end they were concerned it cold be causing Chiari as the LP shunt has a tendency to overdrain. The other thing was that from the time they put it in, I suffered terrible back and leg pains and tingling in my left side. They would not accept it was the shunt, despite several hospital admissions because of it. It was only when I'd been admitted for a 5th time, by which I was using a stick to walk, that I saw a different neurosurgeon, who then diagnosed the nerve damage and possible signs of chiari, and said it had to come out. If it hadn't I would have been in a wheelchair by now.

I didn't have chiari in the end, but I did have severe enough damage to affect and weaken my left side and leave me unable to comfortably bend, walk, sit or stand for long periods of time, and is now permanent.

Considering I had already permanently lost my peripheral vision and depth perception, there was no hesitation in revising it to a VP shunt.

Although it is apparently rare for someone to suffer back pain from an LP shunt, it does happen and it is documented, so I'd be insisting that they get to the bottom of it Julie, and see if the shunt is definitely the problem and if so find a solution. hug
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PostSubject: Re: LP Shunt and spinal pain   Sun Jun 12, 2011 12:34 am

I think that's where I feel stuck. Three different surgeons agree that the shunt probably has caused a Chiari Malformation because my brain stem has descended into my spinal column, but the opening is big enough the brain stem isn't constricted. They all agree it's probably causing a lot of my pain, but NO ONE is willing to move it. I'm curious..do you remember what tests they used to determine nerve damage? I've had MRI's, CT Scans, Fluid Flow Studies, and x-rays (all shunt series), but none of them are showing any obstructions or damage. The general consensus seems to be that my shunt is working, but draining too much fluid when I'm upright..one surgeon actually laughed and told me 'gravity is not your friend'. I'm trying to keep a sense of humor about the whole thing, but my quality of life is definitely suffering at this point. They are saying it will take vision loss or brain stem obstruction before they'll act..any suggestions?
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PostSubject: Re: LP Shunt and spinal pain   Sun Jun 12, 2011 10:44 pm

I had them do a needle test thing on my legs, and arms, and they also scanned the area and used contrast as well to determine the damage. I was also seen by the pain management physio and team and they also found the nerve damage. My new Neurosurgeon was concerned the LP shunt was causing chiari and said it must come out asap, even though it was working fine and my eyes were stable. there was no messing about and it was revised within a month. I just don't understand your doctors, especially as they suspect Chiari, surely the risk to you ending up paralysed is bigger than the risk to your eyes! How is swappeing one shunt for another going to endanger your eyes, when they are Neurosurgeons that are doing exactly that, it just doesn't make sense, or have they no faith in their own surgical skill?
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PostSubject: Re: LP Shunt and spinal pain   Mon Jun 13, 2011 10:12 pm

That is a GREAT question! They are telling me that the LP shunt is managing my vision/IIH and the VP shunt doesn't work as well, so they don't want to risk it. I guess as long as my brain stem isn't choked off it isn't an issue for them. I'll definitely talk to them about the nerve damage..thanks Heidi!
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