Sunday, April 26, 2009

Things They Will Never Tell You About a VP Shunt

After her stroke, my daughter's brain swelled and blood clogged the tiny passageways that allow the cerebral spinal fluid to move from the brain along the spine. It also stopped the little "villi" that absorb cerebral spinal fluid (csf) from doing their job. That means that her brain would just continue making csf and the whole thing would swell up...hydrocephalus. Hence, the need for a shunt. The shunt takes the place of the absorption system...a small tube is placed in the ventricle of her brain and tubing is run (in her case) from the brain down behind the ear, neck, down her chest and ends somewhere behind her abdominal wall where it drains into the abdominal cavity. A bulb is set just under the skin on her head...it has a rubber "pump" that you can pump to check and see if the fluid is moving, or, if there are problems (if the bulb is stiff, it is possible that something is wrong).

Unfortunately, right when my daughter was having her surgery, the now standard programmable shunt was not widely available. One had to get either a low pressure, medium pressure or high pressure shunt valve. That meant that the level of pressure that accumulated in the ventricle in the brain would have to be high, med. or low to open the shunt. It was sort of a crap shoot as to whether or not the pressure was right...if it wasn't, well, the brain would either under drain or over drain..problem being that symptoms for both were similar. My daughter ended up with a medium valve at first and after the shunt blocked, she got a low pressure valve, which she still has to this day.

Anyway, the point of this post isn't to go into great details about standard shunt function, but to tell you stuff that doctors DENY happens, or just don't tell you. We pushed them hard to do what we knew was right.

Did you know that it is common for first implant shunts to fail within the first 6 weeks (this is for acquired brain injury...impact or other trauma)? Why is that? Well, we figured it out. My daughter's shunt blocked after she had a massive shaking fit due to withdrawal from a drug...she shook so hard, it affected her brain. The damaged brain will produce, or better yet, attempt to eliminate what is called "necrotic cells" in other words, dead cells from the fluid. The fluid filled with dead cells is thicker and is more difficult to pass through the shunt tubing. The shunt can block after this either in the tube or at the distal end (the end in the abdomen) causing a "loculated pocket"... a little sticky bubble that traps the fluid so that it actually backs up the shunt, or at least stops the fluid from moving entirely. That can be avoided by having a shunt doc. (the guy that does the shuntograms) inject saline into the bulb down the tubing to clear it. This has to be done as maintenance, before anything happens, not during a crisis (although it might help). The loculated pockets can be avoided by rubbing the abdomen at the distal end of the shunt...several times a day to keep things moving. The likely hood of getting a doctor to agree to running saline down the shunt tube is pretty small, let me tell you! But, if you get a cooperative type who listens to logic (this is NOT rocket science), you might get the job done. To this day, neither my husband nor I understand how we got those docs to agree to this...the neurosurgeon felt it made sense!

The distal end of the shunt tube is quite long and is sitting in the abdominal cavity all curled up in a spiral. This allows for the child to grow and the shunt to lenghthen without having to do more surgery. Now, again, this is logic....as your child grows, the tubing stretches along the body, under the skin. Think about how that must feel to your child...not too much 'cause you're likely to fall apart...imagine adding a few adhesions along there. Get the picture? So, when your child is weirdly uncomfortable, there's just one more reason for it. The other thing about that tubing is that it moves around in the abdominal cavity. Our daughter's tube ended up behind the bowel at one point...this also happened to another child, and it ended up strangulating her bowel and she needed emergency surgery. Our situation was different. My daughter was getting intermittent shunt function...some days she was sleepy and unfocused, others days not. Since my daughter did not clear her bowels very well, as they filled up, there was pressure on the end of the shunt tube, slowing the flow of csf and causing mild symptoms of hydrocephalus. The neurosurgeon dismissed this idea, and refused to move the distal end of the shunt saying "If I did that, I would be a laughing stock among my collegues." (like I care)...however, to her credit, she palmed us off to a general surgeon (whose collegues, obviously, were not prone to laughter), who agreed to do the surgery. Right after she moved the end, no more shunt problems! Surprise!!

When you have a shunt, weather systems affect you. Low pressure systems can cause symptoms...headaches, fluctuations in flow, drowsiness, furrowed brow.

Flying (in an airplane, as opposed to the other kind....) can cause massive pain.

You can hear noise behind your ear where the shunt tube flows...pops, clicks, sudden itchiness, even dizziness as the flow goes past the eustachian tube of the ear. Don't believe anyone who tells you otherwise.

The shunt bulb on your scalp under the skin can be itchy and irritating.

The csf draining into the abdominal cavity is very acid forming in the body. When you know that the ideal for a body is to be slightly alkaline, this extra acidity makes it very difficult to to achieve. An acid body is more prone to illness...bacterial and viral infections. You have to work extra hard to get the body in balance. We use an acid neutralizer in all of my daughter's liquids to give her a hand up.

Hope this may be of help to some of you out there.

16 comments:

  1. Thank you - this was *very* interesting to read. Emmett's shunt is a programmable one, but I've always wondered what it was like for him (he can't tell us). And he's always, always sick! I would love to hear more about the acid neutralizer that you use. Thank you again for all of the shunt information.

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  2. Hi Julia, sorry it took so long for me to reply. I use a product called "Alka pro acid neutralizer". I like it because it is tasteless, but you need to use more than they say on the bottle to alkalinize stuff like juice. I have been using a bit of litmus paper to test things lately. This stuff is available in our local health food store. It is an american product ...from Kansas?? (KS it says) Alternatively, you can put a bit of real lemon juice in drinks...but it does affect flavour. The other thing to help your little guy would be to get him to drink a bit of baking soda (1/8 tsp) in a bit of water a couple of times a day. this will do the trick also...but some kids hate that salty taste. Hope this helps...drop by anytime.
    Claire

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  3. it is always an education to read your posts. i think you need to be given an honorary doctorate!

    ps- i loved your comments on my blog...LOL! making ordinary icky words into medical words... emesis, voiding, etc.... LOL! you left out my favorite: "Stool" for "poop." "She really stooled alot today. Just wiping up stools all day long..." :)

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  4. This is really helpful for me im in a sort of situation where I don't have to replace mine asap but pretty close but it will try those tips hopefully i will b able to avoid surgery thank you.

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  5. It's been 6 months since they inserted the Vp shunt and recently I started hearing a clicking noise by my right side ear..here at the dr to see what it is the Neuro nurse said it wasn't nothing but my oncologist insisted that I get it check...it's funny because I only hear the noise when. I raise my arms or shrunk my shoulder. .

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  6. THANK YOU THANK YOU THANK YOU!!! I HAVE AN LP SHUNT AND EXPERIENCE A LOT OF WHAT YOU TALKED ABOUT. I TOO CAN TELL WHEN MY HUNT DRAINS SOMETIMES BY MY EAR POPPING AND THE TINNITUS CHANGES PITCH!

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  7. My son, now 2,5, has a vp shunt since he was 1 month old. Doctors doubted for serveral weeks weather he needed a shunt or not. When he was 1 year old, he vomited every week during several months. Neurosurgeons found nothing wrong with his shunt. No overpressure, nothing, but or son kept vomitting and feeling bad. We went to a osteopath. He felt "tension" around the shunt, especially in the neck close to the nerve which leads to the digestion. After 2 treatments the boy never vomitted again. Every 2 to 3 months he feels bad again, we go to the osteopath, after the treatment, he feels as reborn. Are doctors/surgeons to short-sighted?

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  8. I aM a grown adult who got a shunt almost 3 years ago and I don't know how these little ones deal with it. I have a hard time, my love and support goes out to them all and those who care for them.

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    1. I have had a VP shunt since 3 months of age. I'm 26 now. It gets harder as I get older. It wasn't so bad when I was little. I think it is easier for those of us who have always had them, less of an adjustment.

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    2. Why does it get harder? I'm nervous for my young daughter's future as an adult dealing with hydro/failures/daily life.

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  9. wow my daughter has been to two hospitals tons of testing having periodic pain episodes and her shunt during a tap collapsed and gave only a few drops of fluid but the tests all say she is fine but her shunt hurts or puts pressure on. her head shes itchy all over now...I dont know what to do they wont help sje has a vp shunt

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  10. I am so sorry to hear of your situation! I do know that shunts are itchy under the skull though. i don't know where you are writing from, but I guess the only solution is to go to another doctor. I don't imagine that's easy. Wish I could really be of help here. Obviously, her shunt is NOT "fine". You may need to be really aggressive and push them. Sadly, that is usually what we all end up having to do.

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  11. We've been battling headaches right around sunset at a minimum of twice weekly for the last few months. Of course NSG says it's not related but I'm highly skeptical. I've heard adults say weather makes a big difference for them. Why not changes from day to night? I'm not sure there is anything we can do other than deal with it. :(

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  12. Hi, We have just found out that our grandson has Hydrocephalus. He is 3 months old, is it safe for him to fly without having a shunt? My daughter has been told that he can fly, We are thinking of the pressure on his head being up so high in the sky. He has to go to the Brisbane Children's hospital for the procedure. That is an hour flight from we he lives. Any information would be greatly appreciated.

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  13. I have no idea what to say about that. I imagine it IS safe for him to fly but may be very uncomfortable to fly. He would probably have a bad headache. That's the best guess that I can come up with. The whole thing about flying has never been satisfactorily addressed in my view. I always wanted to know if a person could fly WITH a shunt. I read once, a long time ago, of a man who had children with shunts and he was a pilot. He insisted that the flying negatively affected his kids. But there is no proof or study or even a lot of anecdotal reporting on the issue. Anyone out there with anything better...Please comment!!

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  14. Hi my name is mikalah and I'll be 17 in 8 days and I have hydrocephalus also Ive had my shunt since i was 6 months old and never had any revision.

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