I am a 45 year old male. I received my first shunt when I was around 5-6 weeks old. I've had my shunt replaced several times since then, sometimes when it was too short as I grew, sometimes when a blockage occurred, and sometimes just for bad luck. I've played high school football, was a scuba instructor, and loved to drive my motorcycle, etc. My mother was my only limitation as a child. Good luck to anyone with it, and remember the skies your only limit. God Bless.
My VP shunt was removed by age 2 never had any other surgeries but I was paralyzed from birth till I was 2 yrs old I still would be if my mom never forced me to walk and I wouldn't be having so many problems with legs and I wouldn't be in chronic nerve and muscle pain if only.... I believe she was ashamed of having a handicapped child, I am now 54 yrs old
Hey can we talk fb i was born with i had a shunt put in back 1998 i know 1 other person who has the same as me a friend brought it up that he knew someone. Just would be nice to talk to someone who knows im not insane i never had any ops on it after the operation to get the shunt.doctors wont take me seriously about there being a problem now i go back to functional but ive had signs of a leak in the spinal cord but doctors wont listen to me
Thankyou for your testimony ,my son has a shunt as well,he’s had it since he was 3 months ,and he is 7 now.he’s been hospitalized several times for headaches vomiting and fevers and the doctors can never find a source ,all tests come back negative ,did you experience any of these symptoms ?
My hydrocephalus was diagnosed when I was 4months old. Since then I had shunt replacements about 6 times. I am now 32. I live my life normal. I am currently a mental health therapist at a psychiatric hospital. You’re right. The sky is the limit and my mother too was my limitation.
My Older sister Christina passed away from this when she was 5 and I was 1 back then in 1979 they didn’t have the same treatments as they do now.. it’s Amazing how far we have came in medicine.. I really wish I could have grew up with my sister, im sure We would’ve been best friends Rest In Peace Christina I Love You❤😮
I was born with it in 1965. Have had three shunts in 58 years and a few more tubes replaced when I was growing. Have had a pretty good life in all the time I’ve been on earth and hope to live until a ripe old age. Only one thing is that every operation I have eg repair arthritic limbs and joins require me a full unconscious anaesthetic each time.
I'm currently 35 years old and was born with congenital hydrocephalus in September of 1988. I have had 6 shunt revisions. I last had a revision on July 1, 2010 at 21.
Another symptom that may be only symptoms for babies is crying every time they are moved,which is because they are in pain but can’t communicate that they are hurting so they can only cry,it was a normal cry but what made it an issue is that I cried every time I was moved and was chilling whenever I was still but once I was moved is when I would start crying, I got my shunt put in at 7 months old cuz at my 6 month checkup from being home from the nicu a college student noticed my big head and said how I have hydrocephalus and I was taken to the ER, luckily since they caught it early enough before it caused long term issues my mom was able to schedule an appointment for me to get my shunt put in, I asked my mom why I didn’t have to wait months and my mom said months would be too long so I only had to wait a few days, and I was good cuz they told my mom to move me as little and as gentle as possible since moving me is what caused me to cry every time I was moved from the hydrocephalus
Amazing wow! Now I've only done 5 brain operation and have hydrocephalus and brain tumors but my tumors done in the way of radiation, I'm only 19 and now I'm 20 years old and still not know what to do to avoid shunt infection. Do you hsve any tips & suggestion?
I had Hydrocephalus in 2017, I lost some of my vision, I have recovered, but every time I think about it, I remember that if doctors didn’t do the surgery in three days, I would be blind.
As a person with hydrocephalus, if you are wondering, it does not affect you if you have surgery before it becomes too extreme. It really depends on how good the nurses/doctors are in your country.
I didn’t get diagnosed until I was 8 and when I went for surgery I had a slim chance of survival because of how old I was it’s a miracle that I’m here and I still remember waking up and my head hurt like crazy and it was heavy and after that I was diagnosed with autism with ain’t a good combination of disabilities basically my life was and still is mostly trips to the hospital for all types of problems so I’ve had surgery a couple of times all the way up to the age of 11 as and after all that 7 years later I get gallstones and had to have my gallbladder removed pain is an old friend and It hurt like hell
I was diagnosed at the age of in 1981. Spinal types every month. I had brain bleeds just about every year for about 6 years with brain bleed. I had my first shunt at 19 into my spine to my abdomen. 20 years again had to have it redone due to tubing breaking. Again into the spine. Ten years ago, my brain had to have a sling(a cardiac sack) implanted to hold up the brain. In 2023 it again the tube ing broke open in my back area and the other end rubbed a hole in my intestines. They removed all devices(1st one was left in). They thought I was ok. I got really sick and loosing my eye sight. They Implanted an external tap and drain to see how much I was producing. In a 50 hour time period, I drained just over 2 liters of spinal fluid. After that I had a shunt placed in one of my ventricle. Two were collapsed, one partially collapsed and one full one. I now have programmable one the other end drains into my heart. Now just before draining at a set pressure level, my hearing dims and my eyesight goes tunnel. I’m 61.
I am 8th month pregnency.dr told me that my baby is by birth hydrocephalus 😥😥with 32 mm water in his brain😭😭his brain is totaly lost.Any miracle can save his his life n no other option.i have a surgery on 10th june .
I am a 60 year old male. I have had hydrocephalus since I was about a month old. My last shunt revision was 1977. I have not had any problems with it, but I do have nystagmus as a result of hydrocephalus. I have been blessed not to have any problems that comes with this condition . I talked to my doctor and I asked him is it possible that I no longer have it? He said that it is possible and that I would have to be tested to find out.
Its case by case but usually it will require some surgical repair to return the head to a more natural shape. If it's identified and treated quickly, special helmets could be used instead of surgery.
My niece also have these congenital abnormalities She also suffering form spina bifida with hydrocephalus.. bt now we have been done the surgery of spinal nd head surgery. With shunt... But surgeon had been cleared that your baby could not walk. She will be dependent on wheel chair... May be....
