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.

34 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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    1. My son is 8 and has been in a plane many times. The only time he seemed to have a hard time was when he was in shunt failure. He acted like his head hurt really bad while we were in the air.

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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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    1. I flew a couple years ago from California to Colorado, I had lots of uncomfortableness and a headache. I rested a lot when I got to my destination points. I'll be 21 in March. I've had my right VP shunt since pretty much right after birth. Being in the incubator caused pressure causing hydrocephalus and they did surgery putting in the VP shunt. I was 2lbs 4oz. Born premature at 28 weeks. I had a baby May 20th, 2014. Pregnancy was uncomfortable with the shunt. I had a pregnancy safe MRI done while pregnant to be sure my shunt was okay for me to give natural birth etc, they confirmed that it was working properly. I smoked for two years before getting pregnant and quit while pregnant and picked it up again two months after having her. I still smoke cigarettes. My ventricular cord pushes outward on my neck and gets really sore and tense and pushes against my skin right under where the wiring of my bra sits, and I generally don't wear bras now unless I go out into public or somewhere important. I've been having difficulty eating since giving birth. I've lost 35 lbs since giving birth. I was 145lbs now I'm 110lbs. I can't eat much more than a couple small meals a day without getting nauseous. I also get belly pains after eating even small meals or drinking liquids anything more than a glass... I'm really worried about all of this. I'm going to make an appointment to see a neurologist soon. I'm scared that something could be wrong with me.

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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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  15. Hi, I was told I have hydrocephalus about a month ago now and two daysbefore my holiday I had to get a lumber puncture done, as I was flying also I asked my Dr and he said it was fine for me to fly because I was still I'll I had to be careful and slept alot the travelling wasn't a nice experience made me feel a little sick but it was manageable, a few days after I had came back from my holiday I was told I needed a shunt put in, after the surgery I have felt alot of pain in my stomach area and what feels like a urine infection too although I have been put on tablets and it seems to be making no difference and I have also not heard from anyone "proffesional" docs etc since I have been out of hospital almost three weeks now but my eye specialist is writing a letter to see who is dealing with my case as even he is concerned about who is dealing with me, thé thing that worries me is thé fact that i dont know alot about hydrocephalus and would like to know more. Like what to expectations after thé shunt is fitted and stuff. Thanks in advance xx

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    1. Hi Anonymous!
      I am sorry to hear of your abdominal pain. You really MUST get a physician to talk to you and to make certain there is no post operative infection of any sort. Don't be shy! Push for it or get someone to advocate for you. You have a right to information about this as well. You may want to write down a list of questions to ask a physician or nurse clinician (I often find that nurse clinicians are more approachable and generally have more realistic hands on information than docs.). Understand that there are people out there who have had shunts for years and years with no complications whatsoever. I know that since her final shunt revision my daughter has had no issues...though certainly she knows it is there. However, get checked out...the abdominal pain is not a good or acceptable thing. And get all of your questions answered no matter what.

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    2. My son has hydrocephalus and I like learning anything I can about it. www.hydroassoc.org has a lot of information and I love that site.

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    3. Thanks for the link to the site!

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  16. Many thanks for the post! I am 53 (54 in a month) and have been shunted since birth (currently on my 23rd). Never knew about CSF moving our bodies from alkaline to acidic. I am wondering now whether it is a cause of my acid reflux in the last 5 years.

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    1. I wonder about the acid reflux too. If your shunt drains into your abdominal cavity (as opposed to the heart cavity), it makes your body chemistry move toward acidic, but I don't know if that relates directly to reflux and the stomach itself. Like the comment below, trying to keep your diet on the alkaline side can't hurt anyway. 23 revisions! Wow...do you know why so many? Some people get one or two and live happily ever after...if you don't mind my asking.

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  17. We just got back from the states, 20h flight with my baby girl with 2 VP shunts, she was more comfortable flying then me or my my hubby... she loved it. Shes 19m old, and doesnt understand the flying concept but she was happy, eat well, she was watching cartoons, even better than on land... lol... from our country to USA and back in les then a minth and she was screeming from joy when she realised we were back on the plain. She also extends her neck a lot at the side where her shunts are and I think its that feeling you described. Thanks for this even thou our ns told us everything on here to the word. My baby girl has had 11 brain surgerys, during the firt year of her life. And her ns said she would. She has normal pressure shunts too. I guess were lucky we have a doctor like that.

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    1. Thanks for your comment Anonymous! The flying issue seems to be a mixed bag when it comes to shunts. Your little gal sounds like a treasure!

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  18. Definitely interesting ! I would like to know more about, what you use to balance the acid? Maybe I that can work for me too !

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    1. Hi Toni! The best way to battle acidity is always with good diet and exercise. I think taking extra acidophilus can help, having a little slice of lemon in your water bottle as you drink throughout the day, lots of fresh, raw or lightly steamed veggies and unprocessed meats (as in deli meats). Not much else you can do, The more sugar you eat, the worse it gets. My daughter has some problems with mucus as a result of both the shunt and the g-tube presence. I am now using marshmallow (the actual herb, not the candy) and will be adding aloe to that (juice) to soothe her small intestines and reduce the mucus build up. Hope it works.

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  19. I'm so glad this post was shared! Thank you for your post. My son is 38 yo and has had shunt since he was 2 weeks. He now has a single programmable w/ 3 catheters -- left vent//right vent/lumbar. He has always been a bit sensitive to weather changes but, after 124 surgeries, is now painfully sensitive to weather changes. While he is "high functioning" he is unable to sort his symptoms and its up to me. Your post gave me new insight. Thank you.

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    1. Wow! That is a lot of shunt to keep track of. It's such a guessing game when they can't express themselves isn't it? Weather is a big one for my daughter as well. Low pressure...look out.

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  20. Hi Claire, Hi everyone, I'm writing from Tanzania (East Africa). Some of our children here have avoided shunts completely. Doctors have been doing a different procedure known as ETV (Endoscopic Third Ventriculostomy). They make a hole somewhere in one of the ventricles to drain the CSF. This eliminated all the shunt complications if done successfully. Is it familiar in your side of the world ? Please let me know if you like to know more about it. The surgeon is a friend of mine.

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  21. Yes. The procedure exists here. Here is a link to one site about it. http://neurosurgery.ucla.edu/body.cfm?id=428
    Thanks for writing!

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    1. This link is even more detailed...
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3409989/

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