Hello, this is my first time finding your site and posting, so I hope I do this right. My daughter is 14 and has both a VP shunt in her head and an LP shunt in her back. She has slit ventricles and has had 10+ revisions in her life. Most recent change was a VP shunt replacement in August 2011.

Recently she began suffering headaches every day, begnning in early April. Our daughter has some difficulty identifying the specific pain areas, so there is a delay as we sort things out. After a few weeks we started the normal diagnostics- x-rays, cts, etc. We found the tube had disconnected from her VP shunt, just below the shunt itself. This caused an increase in drainage. Had surgery May 4. Her tapped pressure was a 3 at surgery, so she was indeed suffering from low pressure. They put in new tubing and connected it to the shunt. We have seen an improvement in her cognitive ability, but not fully returned to the prior state- still gets stuck on words at times and oftens grabs in an appearance for stability on her feet. Pain too- complains of headaches daily and tires more quickly. Her time in the hospital after the reconnection/tube replacement was only 36 hours, and we've now been home 9 days.

My question is this- has anyone had a similar experience, how long does it take for recovery- pain to go away and the dizziness. She had incisions at the shunt (scarring from prior surgeries), and in the abdomen for the new tubing. We hoped she whould be better by now and maybe she needs an adjustment in pressre, but would greatly appreciate hearing the experiences of others. She's better since the surgery but not where she was before April.

Thank you in advance.

You're in good company here! We're a knowledgeable bunch because draw off our own experiences the experiences that we read about on this forum.Specifically I took a suggestion from this board to my nuerosurgeon which led to a procedure that ameliorated my problem.
In reference to your daughter, I can only draw on my own experience and from general (unofficial) consensus of other's experiences that they've shared on this board.
First thing I can address is the amount of time it's taking her to recover. There are many factors that go into a recovery time and it sounds like your daughter had a lot of those factors. For instance, the fact that (it sounds like) it takes a while for her malfunctions to be pinpointed. It's the curse of the slit ventricles, (i've got them too). The problem that it poses for recovery is that the longer your daughter was living with a shunt malfunction (headache, dizziness, blurry vision, balance issues)the longer it takes for all of those things to return to baseline. For example, I had sunset eyes and blurry vision for two days before a shunt surgery, and it took two months for my vision to return to normal. It was incredibly frustrating, and I only had that symptom for 2 days before it was corrected!
Another thing you mentioned was that it sounds like she had incisions in her abdomen and head, indicating that they replaced the entire tube. This is in fact a pretty major surgery and recovery should be assessed separately from the short surgeries on the proximal catheter at the end. When new tubing is put in your body many times there is bruising along every spot that they had to jam the tubing through (sorry to be crude but that it literally how they have to move it around in the body sometimes). The small incisions that you see on the outside of your daughter's body, are no indication of what her body went through, and that's one of the hardest things to remember. Kind of like, "I look fine, so why do I still feel like crap?" Because you just had major surgery and your body needs compassion and understanding. Also, if I recall she had extreme change in pressure from her overdraining shunt to a normal pressure, normal working shunt. The head needs time to readjust and recalibrate.
As for the pain she's still having, again, remember that she went through MAJOR surgery, and every single movement that a surgeon makes on our bodies while we're sleeping, can cause pain that last far past the extent the surgery. I think also that the pains could be due to any variation in a surgeons style. For instance, my incision site is at the front of my head and the incision was always curled to the back. Well in December the NS decided to curl the incision towards the front just almost reaching my hairline. Because of this my scalp and incision was EXTREMELY sensitive (and still is). The nurses told they thought it was because we have so many more nerves in our faces so the fact that the incision was so close to my face probably lit up a bunch more nerves.
You seem to be a very caring and concerned parent. Give your daughter patience and compassion and teach her to be patient and compassionate with herself. Every recovery is different. I know when I was a kid I had many revisions and so many times i'd be out of the hospital the next day and back at school the next. But as I've gotten older (i'm 27) it has taken me a lot longer to "bounce back" after surgeries. I've had to be patient with myself and have compassion with my body and not expect so much of it all the time. I hope any of this was helpful or hopeful.

Thanks much for your reply. It helps,she'd light on what may be going on. We have have a clinic visit today and hopefully that will help too. It all confirms what we have believed for awhile- that shunt placement and revision is as much art as science.

Hello,
I posted this question in a different part of this forum. I am new here and still learning the ropes, but I so need help with this. Here is what I posted and I hope you are able to help.
Hello,

I have a 9 year old daughter who had a right functional hemispherectomy when she was 8 months old. She had her shunt placed shortly after that and back in June of this year was her first replacement. It was an emergency surgery because the shunt had become extremely clogged. I have several questions.

1. How much pain were you in prior to your replacement and for how long?

2. How different did you feel after the replacement? Did you have any issues with sensory, behavior or have any pain afterwards?

My daughter is different, since the surgery and has regressed in several areas. I cant put my finger on one thing... but sooo different with her sensory... so much she is refusing to take baths. I cant even wash her hair she seems like she is in such extreme pain. She is going to have a Shunt series test some time in the next week.

Any help - speaking for her would be wonderful!

Thank you!

Hello. To the one who posted a reply "You're in good company here!" Not sure if that was directed to me... but I have to tell you even if it was not... it was an AMAZING reply. It answered soo many questions! It may explain why she has such issues with her bath time too. I never thought about the internal part of the tubing. Please do be blunt, that is what I need to understand. Its totally fine.
*edit* Please feel free to contact me if you have any questions too.

Personally I've had symptom relief immediately after surgery in each of the 5 surgeries I've had over the past 10 years.

I have a VP shunt for congenital hydrocephalus and have experienced similar symptoms when my shunts have failed, including the dizziness, but again almost perfect after surgery. I even had my shunt disconnect six years ago, and again perfect after surgery.

The only lasting "symptom" I've ever experienced long term was a pulling in the shunt tract after one surgery, but I genuinely believe that was a botched operation; that "pulling" eventually led to the disconnected shunt I mentioned and required a second neuro to figure it out and fix it.

I do feel for you on the diagnosis, until I learned to diagnose my symptoms on my own the typical time between failure and surgery was about six months for me. That was hell of course, with the dizziness, headaches, nerve issues, etc. But after surgery all has been fine each time.

Hello, I was born with hydrocephalus and had my first VP shunt implanted when I was about a year old, with a revision when I was around 2 years old, and I haven't had any problems at all until about a year ago. Now I'm 21, and very likely to be having either another revision or a replacement in the next couple weeks to try and correct some vision problems I've been having for a little over a year, and I'm wondering about how long it should take for me to recover enough to go back to life as usual, and how long before I can get back to rigorous physical activity (lifting weights, martial arts training) I know that recovery time depends on the person and everything, but I'm just trying to figure out a rough average.

Thanks in advance.

I have been looking and researching EVERYWHERE!! For someone with the same problem as my son. This situation may be a little bit different. But I will take any help I can get. My son has had multiple shunt revisions his last one was about 2 years ago. But ever since his last revision his head is extremely sensitive to the touch anytime his head is touched in that area he will be in tears instantly. The dr. Says there isn't a problem with his shunt and he isn't haven any signs of a malfunction. I'm looking for any answers or reasoning as to why this is happening.

Hi, I had my 7th VP shunt revision in July. This is the worst surgery yet. I too, suffer headaches EVERYDAY. They range in pain from 2-8. Neurosurgeon is still trying to figure out what is wrong. I hope your daughter is feeling well.

CNAJaclyn

Hey CNA,
I'm in a similar position to you with headaches EVERYDAY. My original shunt was placed in my 20's in '96. I had a revision in Feb '13, which didn't work then had another revision in Sept '13. Since then I've not had a day without major pain. My pain rating is from around 5 to 'ohh my holy god', the latter being more prominent. The NS says "it's nothing I've done" as if I'm blaming him, which I haven't. I've been sent to see an independent neurologist, who last week gave me 30 injections of Botox to relieve headaches. It hasn't worked yet, but it may take a few weeks to receive positive results, so I'm still hopeful. The NS has 'fixed' the problem but I am slowly losing what little sanity I have left with the continuing headaches.
I hope you get some sort of answer to your pain and your NS is a bit more helpful than mine
Merl1n