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VP Shunt broken
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VP Shunt broken

My son has a VP Shunt that he has never had a revision on, he has had the shunt 17 years now.  He was premature and has hydrocephalus result of grades III and IV bleeds.  A while back our son complained of a pop near his shunt.  We had an appointment with the Neurosurgeon coming up a few days and since he did not have any other complaints, we  just went on as normal. He did have a CT scan the next day (Coincidental), no change in his ventricles.  The Neurosurgeon wasn't too concerned.  He ordered a shunt series. A few weeks later I picked up a copy of the shunt series for my own records.  There is plain site was a broken tube in the neck.  Our son had obviously grown and the shunt didn't.  The Neurosurgeon said that his shunt may or may not be working, his body may have made a tube from scar tissue to join the two part or maybe my son just didn't need the shunt anymore.  Our Neurosurgeon did admit that he didn't know enough about shunts to make that determination and now has referred us to another neurosurgeon.  Ok my first reaction is AAAAHHH!  I have now calmed down.  Has anyone out there ever heard of this before?  My goodness sakes.  
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Avatar_f_tn
I am shocked that your Neurosurgeon does not know a lot about shunts, that's almost scary!!! I'm also glad that your son hasn't had any serious problems because something that was on that report was visible to the doctor but he seemed to have missed it, you caught it though, good that you did. You seem like a very devoted Mom to look over the reports and receive your own copies, I think that when you have a child that has serious health issues that you have to become their advocate in the medical world, it's sometimes the only way to be heard and get the proper care for your child.
My niece is a special needs child/adult now who was born with congenital problems ranging from cardiac, kidney and ortho problems. She's had seven open heart surgeries. Her last surgery was to place a pig valve in her heart and replace a shunt that had been there, she outgrew it and has had to have it replaced previously. My nephew and niece are caring for her now (my sister's son and daughter in law) and have taken on the responsibility full force. I'm so thankful and grateful that they're doing this for her. She's doing much better now but the last year has been really tough on them. They had to drive back and forth to LA and they've got two small children. They never left my niece's side after her surgeries though and often times would stay there for weeks at a time while one parent was with the children at home. It's a great sacrifice of time and energy but when you have a sick family member, it's just something you do, you don't question it, you work through it and keep the doctor's interested in your family member so that they can receive the best possible care available to them.

I have such admiration for anyone with a sick child, I really do.
Let me share a website with you because it's become a sort of support system for my family. There are all kinds of medical problems addressed there and some very similar stories. It's completely FREE and easy to sign up.

http://www.carepages.com/support or http://www.carepages.com

You can sign up there and post photos, share information, gain support from others and be sure that you let family members know so that they can go there and post. It's really a Godsend website for patients and families!!! I've read many stories there of children going through traumatic illnesses and some who have had lifelong struggles with illness.

NaniKai
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Avatar_f_tn
hi there my son is nearly 15 and has had various shunt revisions since he was 17 months old, however his last one was around 10 years ago and has made fabulous progress in those 10 years as he had been left with a developmental delay and problems with gross and fine motor skills. Now preparing for his GCSEs all credit level!!
At the beginning of the year he complained his shunt hurt at the neck but soreness seemed to disappear after a couple of days. Since then he has complained of headaches dizziness and stomach pain in the area his shunt is in. His neurologist done all the usual tests scans etc and it was definate that his shunt had in fact broken I was told the exact same thing as yourself and although he has symptoms that would suggest pressure on the brain there is no evidence of any. I have since been left in limbo as I have no idea what their plan of action is if any at all! Because my son had many complications in previous surgeries they are reluctant to touch it, I feel we are living with a walking time bomb! As my son has a cyst on his brain causing hydrocephalus I was told he would be shunt dependant all his life,,,,,,now I feel we may have to wait until something dreadfully significant happens before they will revise the shunt, anyone know what happens from here on in????
    
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Avatar_m_tn
I also have the same concern with my 29 year old son. Born with Mylomeningocele with Hydrocephalus.  His shunt was placed on his 1st birthday a revision was done 6 months later due to Meningitis. Now he is full grown the shunt has not been revised in 28 years. Recently we were told by Physicians that he has two breaks in the shunt . One located in his chest the other in the brain. No one seems to know whether removing this would be best or leaving it alone. Seems we are treading on new waters. Just not a lot of people out there carrying a shunt around for 28 years so they have no case studies to go by. We are concerned - leaving broken parts in your brain area just doesn't seem to be a good idea to me.
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Avatar_m_tn
I'm curious what you found out about this. I have a very similar situation now. I have had my shunt for 25 years (3 total surgeries, with the last being a replacement 25 years ago and about two weeks ago felt a "pop" in my neck.  A CT scan showed everything idential to my last one in '07.  The shunt series that I had done today showed a possible break in my chest area.  My neurosurgeon, too, is unconcerned, especially given that I have NO other resulting pain or issues and actually have visible "bumps" showing scar tissue that can be seen in my neck area.  He said the exact same thing about it being probable that a tube of scar tissue had formed.  His recommendation was to leave it alone and just watch for fluid pockets or other signs of malfunction rather than risk possible infection with an operation.
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Avatar_f_tn
I was actually on here to see if I could get some answers to what I am dealing with.  I am thirty two and have had a VP shunt since birth for treatment of Hydrcephalus.  For the past two years I have been undergoing treatment for severe headaches.  My neurologist performed a shunt series and a a CT.  Due to the type of shunt I have I can not have MRIs.  The xray actually shows multiple breaks.  My neurosurgeon told me that there was no need to repair because the ventricles appeared normal in the CT.  He told me that it would continue to drain due to scar tissues.  Not so sure about this.  I went from having to tae prescriptions for headaches every two to three months, to now I am taking everyday or every other day.  If anyone else gets more info would love to hear about it.
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Avatar_m_tn
I have a similar situation did not have any issue with my shunt for 23 year. In early august 2011 it was discovered that the shunt was fractured .  in december my seurosurgeon deciced I might not need the shunt. now they are saying that there is no additional swelling in the ventricular veins therefore everything is normal. I'm not able to concentrate for a long period of time without experiencing blurred vision followed with dizziness and headaches. 3 out of 7 days a week I need the maximum allowed dosage of ibuprofene a day. I have a minimum of 400 mg just to manage the headaches . I'm trying to get a second opinion My first attempt was declined because I 'm already seeing a neurologist. I will try to get another referal to see someone else.  My headaches are still present even with the use of ibuprofene. Will update if able to resolve my situation
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Avatar_f_tn
I have a VP shunt, for 25 YRS!! Having symptoms finally of malfunctioning now. They tried to do a shunt-o-gram,but were having difficulties finding the the resivior. It took them 3 hrs. several imaging procedures and then they found it. Injected radio active fluid, and exrayed to see the flow. But there was none. It remained in the reseviore going nowhere. They said the valve was lodged in my skull, and presumed the shunt is not working!? But the strange thing is I have all the symptoms of the shunt malfunctioning, except there is no accumulation of fluid in the brain?! How is this possible?
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Avatar_f_tn
Hi there. My daughter has had the same shunt for 33 yrs. she recently became unwell with all the obvious symptoms of shunt failure. She had a CT scan and an x ray.This showed that the shunt had broken in her neck but the ventricles were normal. A week later she was admitted to hospital and was taken to theatre where she had a procedure carried out for her to be monitored by ICP for 3 days. Still unwell, she was allowed home. We were told that they will examine the tests and come up with a plan of action. She was told that it was possible that her body had adapted to the Hydrocephalus and just maybe she didn't require a shunt. My daughter continues to feel unwell and has daily headaches. Last night she was physically sick twice in the night. She phoned the hospital and as I write this is still waiting for someone to contact her. We share all your concerns on this site and fully understand how worrying the situation is.
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Avatar_m_tn
What happened with your situation? My son is 41 and has had his shunt since he was 1 due to hydrocephalus caused by a cyst. He had one revision when he was 15 due to his growth and the tube breaking in his neck. Since then, no problems until recently with headaches after physical activity. He went to the ER yesterday due to extreme headache, dizziness and vomiting and within 6 hours they had him in the OR and repaired the shunt. It had become unattached in the neck area and they were able to splice in a new portion. They said the valves were in great working order and were amazed that he hadn't had any revisions in the previous 25 years. This was at St Vincent's hospital in Erie PA and I can't say enough good things about them. I guess the message is go to the ER and tell them you have suspected shunt malfunction and they will do CT scan and xrays etc.
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10117210_tn?1407898273
i had a shunt since i was a baby n im 28 i havent had it checked since then should i get it re checked??
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