My daughter has spina bifida and hydrocephalus. She's 26 and has been very active throughout her life. While at the gym using a hand cycle, she experienced a pull on her shunt tubing in her neck and pain in her shunt valve area. That was 2 1/2 months ago. She has had 3 ER visits and 5 days in the hospital. 2 neurosurgeons have seen her and because the shunt is draining and nothing shows on the scans they refuse to replace the shunt.
When is it appropriate to replace a shunt for pain vice functionality?
Gabriel's Life » Living with Hydrocepahlus - Adults
Shunt pain
(6 posts)
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Posted 1 year ago #
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I experienced something like that back in 2003. I had my shunt placed in August 1993. In December 2003, I had an injury while at work where I took a hard blow under the chin from pushig a bookcase that I accidentally crashed into a pole due to not seeing it. The blow occured along the side of the neck where my tubing was.
The following occured a week after the injury: Swelling (Fluid Build up) along the tubing in the neck, Loss of complete vision (10 Minutes), Then after vision regained I had a very sharp pain in the back of my head due to the pressure.
The CT Scan the doctor did the next morning (Dec 20) showed the Ruptured tubing plus the dislodging of placement in the abdomen area as well.
Less than an hour later I was in emergency surgery to have the tubing replaced.
How long has your daughter had the shunt? My shunt is now almost 15 years and the 1 revision so far.
Philip Myers
210 621 2070
210 376 0017Posted 1 year ago # -
She has had one since a week old and has had 11 revisions. This shunt has been in for 15 years and the scans do not show anything which is why they won't replace it. It's oging on 3 months now
Posted 1 year ago # -
I personally would ask for a second opinion. I have had headaches for off and on for almost 2 years now and my neuro won't do anything yet either because of my CT coming back "normal". You might ask her doctor to do a normal x-ray to make sure the tube is in the correct place. It may have shifted and is draining into an unusal area causing her pain. That would make CT appear normal but still have pain.
Posted 1 year ago # -
Hi all, I just wanted to through a bit of info out to you guys regarding headaches and such with normal CTs. As far as your daughter's problem goes, I would definetly seek another opinion. I am lucky to have found the most awsome neuro in the world!!! He actually listens to me and believes me when I tell him their is something wrong even when the tests say everything is ok :) I have been diagnosed with Slit-ventrical syndrome and my ventricals NEVER swell. The had my shunt clamped off for 5 hours before a revision to get the venticular cath out and the doc was amazed that they did not swell at all. This syndrome is most common in adults who have been shunted since early childhood.
Posted 1 year ago # -
I have had a shunt since 1995 I have alot of these simular problems I recently have had a bad pain in my neck and in my shoulder on the side that my shunt tubing goes down I have had CT, X-rays and they say my shunt is fine I just feel like it is not. I had menegitis back in 95 and it damaged the mengies so after forty something spinal taps they placed a shunt it is a nerve racking thing not knowing when it is going to malfunction.
Posted 12 months ago #
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