I am 51 years old and had a VP shunt inserted at 6weeks. In the last 50 years, I have had four revisions and hospitalised with a related infection once. Aside from these incidents, hydrocaephalus has played little part in my rich and exciting life. I gained an upper second class degree at university, played al kinds of contact sport to a good standard and have a fabulous life with my wonderful fiancée and our dog. I have fatigue and memory issues, but see them as something to be overcome, as opposed to anything else. I know what to look out for, on the rare occasions I feel off colour, as does my fiancée. As I have no outward signs of anything, any issues I might have are understandably met with some ignorance, but I an certain that a positive outlook and absence of a victim mentality have contributed to my life, which I have always felt to be more about quality than longevity.
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glad to here it. I have a shunt since I was eight months old. now I am 44 after numerous surgery
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The dr said my daughter who 15 wks pregnant is carrying a child with hydrocephlus and should not carry out pregnancy.... Were confused and scared as what to do
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Wow i am reading your post because i have hydrocephalus and a crack in my shunt tube and it has been deemed as non functioning I thought your post was interesting because my neurosurgeon with understandable concern doesn't want to remove it because I could 90percent lose my eyesight bc it sits behind the optic nerve.
The headache clinic discussed a nerve block to block the pain signals I told her that i had to discuss this option with my neurosurgeon first.
I also have have multiple birth defects and a clotting disorder so for my nuerosurgeon and I it has been a quandry as to regulating pain.
The issue I have with the nerve block and him too would be it would shut off those possible pain signals and send me into complete shunt failure.
I don't participate in these things normally but this case sounds alot like mine.
The headache clinic discussed a nerve block to block the pain signals I told her that i had to discuss this option with my neurosurgeon first.
I also have have multiple birth defects and a clotting disorder so for my nuerosurgeon and I it has been a quandry as to regulating pain.
The issue I have with the nerve block and him too would be it would shut off those possible pain signals and send me into complete shunt failure.
I don't participate in these things normally but this case sounds alot like mine.
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The headache clinic wants to place a nerve block in to allow that area around the shunt to stay numb
Because I am having so much pain around the 40 year old shunt.
And around the catheter.
Because I am having so much pain around the 40 year old shunt.
And around the catheter.
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I have a 6 year old little girl that has hydrocephalus and has a shunt she has had three surgeries to replace it and had it put in at a day old but she is a severe case and is bedridden and blind I sure would love to speak to someone to learn more about it
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At 51 I learned I had Acute congenital hydrocephelus, that appearantly is a birth defect that has gone Undetected for many years! Because of the severity of My condition, my age and overall good health, the neurologist decided to do the ETV and at 55, I have had no issues.
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Hi everyone. I have a daughter with mild hydrocephalus and had a tethered cord. The cord has been treated. Want to know what kind of problems people with hydrocephalus face in daily life. Read up some articles online and I am extremely worried that she might always need help and support in daily activities. Pls help
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Does he function normally? Yesterday we discovered our 6 month old has Hydrocephalus. But it is not affecting him at moment, no brain swelling etc and they don't want to do anything... But they want an mri next week. I'm may curious to know, is your son living a normal life? Motor skills etc thanks
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I am 42. I had a shunt put in at age 6. Multiple surgeries a blood tranfussion in early 80s. No physical abnormalities,many scars, nothing wrong w me now but Why am I still alive? FML
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I wasn't diagnosed w/hydro- rothslesberger until the age of 5, when I had burr holes drilled, to relieve pressure. A short time later a shunt was implanted. It drained to my heart. At age 10, 18, 35 and at 42, shunts drained into the peritoneal region. My current shunt now drains into my chest. It was implemented when I was 44. I am now 58! I do get headaches and migraines, but thankfully have not needed another shunt since 2002!
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I am a 40yr old survivor. Had my first shunt placed at 4wks and have only so far had 2 further shunt surgeries
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My daughter is 35 years old. In the first two years of her life she had 7 surgeries. The first couple surgeries a VP shunt was used. For whatever reason it would not work. The doctors then tried the type of shunt that went into the heart area. Those didn't work either. Her head circumference was quite large and still is today but not so noticeable because she is now an adult. Her doctor went back to the VP shunt and it finally worked. The last surgery was when she was around 7 or 8. It simply was to lengthen the shunt because she had outgrown the original. No problems since then until recently. She has been in the hospital this past week because of suspected issues with the shunt. The neurosurgeon feels everything is okay but wants her to see a shunt specialist. Symptoms she was experiencing was blurred vision in both eyes but the right eye was much worse. Neck pain was another. No vomiting or severe headaches. She has always had terrible short term memory problems. Long term memory is fantastic though. She has always had some balance issues as well. Other than that no other issues. We will follow up with the eye specialist which by the way does not feel the type of eye problem is not really associated with hydrocephalus. She will also see the shunt specialist to get a second opinion.
Cognitively, she has done quite well. Graduated high school, works a full time job, handles her finances and raises her child. She does have some slight brain damage from when she was quite young like repeating herself. As mentioned earlier short term memory loss is bad as well. I am praying everything is okay
Cognitively, she has done quite well. Graduated high school, works a full time job, handles her finances and raises her child. She does have some slight brain damage from when she was quite young like repeating herself. As mentioned earlier short term memory loss is bad as well. I am praying everything is okay
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I just read your post and I wish my sisters surgeon would have been just as cautious. She was 29 in 2013 and was experiencing shunt problems. She had a Shuntogram and it was confirmed the shunt was not working properly. We were to follow up the following Monday but she had stroke symptoms that Sunday. surgery to fix it shunt was delayed till the following Thursday. Dr got to where he needed to be and discovered scar tissue and blood vessels wrapped around the shunt. He ended up tearing out her shunt causing a 2.5 liter bleed in her brain. She ended up not waking up after surgery and ended up having a grand mal seizure. She was than rushed to neuro icu after a bleed was discovered on a ct scan. The dr told us the next day that he caused the problem. She was in the nicu for about 2.5 weeks. She was not recovering in a fast manner so they placed a trach and a peg, she suffered a stroke on her left side (dr claims he caused the bleed, not the stroke, 3 blood clots, pneumonia, and a whole host of other problems. She was in neuro rehab for a month and 9 days where she had to learn everything again. Walk, talk, eat, swallow. The whole nine yards. She now has a feeding tube because of everything that has happened. Her body can't absorb the calories like it used to. I'm grateful she is here, but I wish he would have used more caution. We have asked the dr and hospital to compensate her, but they see no reason to do so. Sorry about the rambling on. Best of luck to your warrior.
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