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.

87 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.

    ReplyDelete
    Replies
    1. Very interesting & informative indded, I've never been able or heard of anything about nutrilizing acid, in the body. I am 33 years old, have had more than a few shunts got my first programmable in 2009 after surviving bacterial meningitis. How can someone my age nutralize acid? Any suggestions? ☺

      Delete
    2. Wow! You are a survivor!! The easiest way to be alkaline. as much as possible is via diet. Stay away from stuff in boxes and cans, limit sugar intake and drink lots of water with a bit of lemon in it (or a thin slice in the bottle). There's not much else to do!

      Delete
  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

    ReplyDelete
  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..." :)

    ReplyDelete
  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.

    ReplyDelete
  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. .

    ReplyDelete
  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!

    ReplyDelete
  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?

    ReplyDelete
    Replies
    1. Do you know if your sons vents are considered to be small or slit? I had Slit Ventrical Syndrome for years and had similar experiences

      Delete
  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.

    ReplyDelete
    Replies
    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.

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

      Delete
    3. Hello, I just turned 22 December 3rd. I got my VP brain shunt done, December 1st. Well, I've had horrible headaches and other problems for about seven years now, and finnaly we got the shunt done. Well, I'm worried about my future. Because idk how it'll effect me. And symptoms of normal functions with the shunt. I'd like to have an idea to prepare myself. Any tips?(:

      Delete
    4. @Mackenzie Purma, I am 54. Have had a shunt since birth and am on my 23rd. I will try to be as optimistic as possible regarding your daughter. She stands a very good chance of achievement in her life. In general, it has been found that those of us born with the condition are above average intelligence. I have always had a problem with short-term memory and mental fatigue, very common symptoms for us. I achieved a college degree in Business and fathered 2 very successful daughters. Now, though, I have taken myself out of the workforce as my endurance is failing. You have to remember that each of us has a different experience.

      Delete
  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

    ReplyDelete
    Replies
    1. Check to see if she is a canidate for a cranial expansion my daughter just had one 5/2015 still recovering. Someone we know had one and he is headache free he is a new person. My daughter neurosurgeon said her brain was really crammed in there the skull was right on the brain leaving no room for it to pulsate.

      Delete
  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.

    ReplyDelete
  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. :(

    ReplyDelete
  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.

    ReplyDelete
    Replies
    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.

      Delete
    2. Flying can cause pressure my daughter 25 does okay on the plane

      Delete
    3. I've had a shunt since I was 27 I'm 36 now I don't have any issues flying either. I read on another site you can ask for a shunt card to carry around and they aren't supposed to make you go through the xray machine at the airport had never heard that before and I always go through it. Does anyone have any issues with or advice on exercising with a shunt I would love to run for weight loss but I remember my neurosurgeon advising against running and riding roller coasters when the shunt was installed in 06

      Delete
  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!!

    ReplyDelete
    Replies
    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.

      Delete
    2. Any change in barometer pressure can cause pressure headaches cloudy rainy days are the worst for my daughter.

      Delete
    3. I have Intracranial hypertension IH or known as PsuedoTumor Ceribri.. Mainly a adult version to Hydrocephalus.. I have had a VP Shunt for 7 years diagnosed 8 and had the symptoms for 13 years.. I am 30 and from the damage b4 my first shunt placement it made me go Legally Blind and has never came back and I have currently had 18 vp shunt brain surgeries... And I have flown (after having a shunt) and some times I am ok and other times when I land I wind up in the ER... I would suggest maybe driving for the child to have his shunt placement and not flying as he has high pressure and no means to release it bc he does not have a shunt yet...

      Delete
    4. This comment has been removed by the author.

      Delete
    5. I have the same thing pseudo tumor. Have had over 20 revisions also. You may want to ask your Doctor to put in a Lumbar perineal shunt. I've had this in for two years and seems better then a vp shunt.

      Delete
  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.

    ReplyDelete
    Replies
    1. God bless you!! You are blessed!!!

      Delete
    2. You are certainly one of the lucky ones - my 14 yr old daughter has now had 11 ops related to her VP shunt 6 of those were before she was 6mths old!

      Delete
    3. Oh dear! Let's hope for none more!

      Delete
  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

    ReplyDelete
    Replies
    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.

      Delete
    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.

      Delete
    3. Thanks for the link to the site!

      Delete
    4. You have to be your own advocate push, push, push and then push some more make them hear you if you are on Facebook there is a support group there just s each Hydrocephalus Association you will see several pages.

      Delete
  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.

    ReplyDelete
    Replies
    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.

      Delete
  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.

    ReplyDelete
    Replies
    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!

      Delete
  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 !

    ReplyDelete
    Replies
    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.

      Delete
  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.

    ReplyDelete
    Replies
    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.

      Delete
  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.

    ReplyDelete
  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!

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

      Delete
  22. Thanks for the info Claire, I already drink lemon water although not as much aT home as when I am out.

    ReplyDelete
  23. Very nice article. Our daughter had a VP shunt placed at two weeks after birth. It came loose an caused an infection, so she had to be transferred to children's to have a drain tube placed..

    ReplyDelete
  24. I was in cuckoo land after SAH in 2009, until I had my shunt fitted in 2010 .I was so pleased to see my Hubby and Daughter again. I had some clear moments but most of the time I just slept before shunt was fitted and the only time it swells is when I am under stress. !!
    Good luck all (it was like a light being switched on)
    WinB xx

    ReplyDelete
  25. My wife will be 33 on the 26th of this month, she has had a programmable vp shunt since birth. 2009 I almost lost her due to malfunctioning. She now has 2 on the same side. Her neurosurgeon is telling her if the bulb fills up fast then the shunt is working. Can someone tell me if this is correct?

    ReplyDelete
    Replies
    1. Hi anonymous. What the neurosurgeon is saying is factually correct. The challenge is that if you have never felt a shunt bulb before, you may not know what "filling up fast" feels like. Ask to feel it at some point when you are with the neuro so you have baseline and in the future, if you wife is showing other signs of pressure, you can feel the bulb yourself and get a an idea as to whether or not it might be working optimally.

      Delete
  26. Dear all,
    I am 58 and had a shunt after a clip was put inside my Brian to stop internal bleeding 6 years ago. Recently I've started to feel drained out of energy and very heavy inside my head. They did a shunt function test and apparently the shunt works properly.
    My question is, would these symptoms be caused if the shunt is draining too much or draining not enough? Would appreciate your comments.
    Regards,
    Mark

    ReplyDelete
    Replies
    1. The only thing that I can tell you is that when it comes to shunt function, both over drain and under drain manifest similarly. This is why it's so tricky to know exactly what is going on. There is also such a thing as intermittent function...good days, bad days or lethargy. In my daughter's case, it was caused once by the distal end of the shunt being wrapped around the bowel. Surgery moved the distal end. The fuller she got, the less effective the shunt was. On another occasion, it was due to the fact that the shunt has some residue in it...like grit for lack of a better term, and the solution was a shunt revision. She has not had trouble since.I hope you will be persistent and find out what is going on.

      Delete
  27. Im 36 and have had a shunt since 27 I'm blessed in that I haven't had many issues with the shunt other than headaches from time to time and not being able to sleep on my right side where the shunt the is placed. I was told by my neurosurgeon not to ride roller coasters or run and to take antibiotics prior to having any dental work done. I work from home so thankfully working hasn't been a problem. I would like to know if anyone else experiences problems working out I've tried using 5lb weights and doing squats and stopped because I felt tension and throbbing in my head and neck where the shunt and tubing are placed. Does anyone have any suggestion or recommendations on other effective work outs I can try?

    ReplyDelete
    Replies
    1. I am 81 and have had a shunt since 1989 with 1 revision to a programmable. I do not have hydro but a congenital cranial cyst. Regarding antibiotics, I was told the same emphatically but found that I became allergic to several and I decided to stop years ago knowing I might need them someday. Since then some doctors agree. Regarding exercise, I play racquetball twice a week and still dive on the floor (I probably shouldn't) I believe it keeps me healthy. Doctors might be too conservative in case something happens. You might want to get more opinions but you can count me as one point on the curve. I also still work to keep my mind stimulated. Good lock.

      Delete
  28. Wow! Thank you for sharing this. We have an 18M old foster baby whom we are working towards adopting. Because of injuries at a week old, he had to have a programmable VP shunt inserted the day after ChristMas last year. The shunt failed at its location in early March...so about 8 weeks later. They revised the shunt and relocated the valve to the top of his head instead of behind his ear. SO much of what you described makes so much sense! He is pretty delayed so can't let us know what's wrong...though of course ehat 18 month old can? Quite often he grabs his right ear (where the tube is behind), and fusses. Now it makes sense! Also, he gets super upset at times and is inconsolable.I wonder if this has to do with the acidity or any other discomfort due to the shunt. Docs told us that the weather shouldn't affect him, and flying shouldn't either. So far, we haven't flown with him, but I can tell you, the weather DOES affect him! :-( Thank you for sharing this!!!

    ReplyDelete
  29. I am 78 and have had a shunt for six weeks. I have headaches daily and my neurosurgeon says all is okay. Is this normal for normal pressure hydrocephalus?

    ReplyDelete
    Replies
    1. Hi Dennis! I am not a physician but if you are not comfortable and you have constant headaches, you need to advocate for yourself very strongly and get a real answer. Just because the neuro says "all is ok" doesn't mean all is ok! Obviously all is NOT ok. The shunt may be functioning properly, but it may be the wrong pressure for you. You may need a shunt that opens at a higher or lower pressure. Go back to the doctor if you can and be very clear about your situation. This can be done all very politely, but don't back down until you spend most of your life head ache free.

      Delete
  30. I read your post and appreciate the care you want your child to have. I have to comment about how you want the shunt bulb injected and flushed. I had a clogged shunt the doctor ordered some tests that required an injection into my shunt bulb. Long story short a while later I had an infection through my brain and down into my abdomen, I would never ever ever have routine flushes because you are just asking for other problems you don't want.

    ReplyDelete
    Replies
    1. Anonymous, you make an excellent point. You are correct that it is a risk to take. However, in the hospital, all the shunt work was performed as a sterile procedure. It would take a good 15 minutes of disinfecting prep before anything got touched on that bulb and only new medical tools were used every time. I remember that, while holding my daughter's head still, the tip of one of my fingers got into the "sterile area" mapped out on her head. The doc glared at me, and re did the entire cleaning/sterilizing process around the bulb, with a new set of tools. I think it's a risk vs benefit thing.

      Delete
  31. This is very on point! I wish I had known these things before getting my first shunt! I learned by experience. I currently have 2 VP programmable shunts. I had 22 placed in 4 years! I can't imagine that much tubing on the abdomen. I had to have mine shortened and tacked down as it kept tangling around my organs (very painful). I feel for any child who has to ever go through this as well as any adult! Weather is definitely not a friend of any brain with a shunt! I feel bad weather or high pressure or full moon coming days before it hits.

    ReplyDelete
    Replies
    1. Yes I too can "predict" weather and sometimes it itches and throbs so much I think I will go crazy but NS says none of that is possible! UGH, I wish they could live with a VP shunt even for a month,LOL. Breaks my heart that children have to go through this, but God Bless Moms like this one who will fight for her child

      Delete
  32. Hi all my daughter is 3 month now she had Meningitis and under treatment now for 6 weeks she start recover now but had external shunt the doctor said she will need internal shunt ones the infection clear . My question is it wize to use internal shunt instead of doing
    ETV (Endoscopic Third Ventriculostomy) ? Said that my doctor is from old school. Please advise me

    ReplyDelete
    Replies
    1. Dear Friend, I cannot advise you in any way because I am not a doctor. I did look online, however and there are some studies that might help you make a decision. I think that your doctor may be playing it safe because the technique to which you are referring (ETV) is still fairly new. Nothing really conclusive seems to be out there, except that there is clearly a move toward less invasive technology to deal with hydrocephalus. You may need a second opinion and you have a right to one. Here are two links, however, with some good information. Just skip to the parts you need to know about. Good luck...and if anyone out there has any experience with ETV, chime in!! http://thejns.org/doi/abs/10.3171/2013.11.PEDS13138

      http://jnnp.bmj.com/content/73/suppl_1/i17.full

      Delete
  33. I am 55 years old,and you dear Lady just became my hero and regainer of my sanity!! Thank you so much for this blog and your shared words of truth!! As you said, it is almost impossible for them to admit and/or acknowledge the "issues" we have to live with when you have a shunt. I'm sorry if I am making no sense, I am sitting here shaking in relief to your words of affirmation regarding things like the itching, the truth about the nausea, the swelling in the tubing..all things my NS and his PA swear don't happen. My prayers to your Daughter and my thanks to you. God Bless

    ReplyDelete
    Replies
    1. Wow! Thanks! This made my day.

      Delete
    2. I thank you too. Living with this is plain and simply horrible. Reading some of these statement ,it's like looking in a mirror. Hard thing is it takes a lot for the Doctors to admit to any of our problems. Thank You so very much for this site,! Sure will help keep me sane.

      Delete
    3. Thanks for writing in Russell. I am always shocked at how little information is provided to people who get shunts. All of these people need to get together and talk! I'm sure it would be of such great benefit. I hope you can find comfort.

      Delete
  34. My 1 1/2 month old daughter had a vp shunt placed when she was born. She has hydrocephalus. I am a mother of four and I have become a worry wort as far as complications with shunts.
    My question is: do any one you experience mild swelling near the site and along the tube? I can actually at times push gently and see/ feel the pocket of fluid. It Comes and it goes. Her neuro said it was okay and that it might do that due to stress. If she's not experiencing any other symptoms is she okay to say it's working? It's so hard with infants because they can't say what they're feeling??? I myself, don't feel like it should swell at all. Thanks in advance!

    ReplyDelete
    Replies
    1. My son was born with Spina Bifida and needed a vp shunt at 3 weeks old, due to hydrocephalus. His shunt drains into his abdomen. The surgery went very well. He healed quick. No problems. Still no problems. He turns 4 years old in June 2016 and still has the same Shunt. No revisions done. There never was any swelling around the tubing, but right at the incision site on his head, he had a round little puffy spot that was risen just a bit. I noticed it at a couple months of age. It gradually became a bit more of a bulge spot, but was always very soft to the touch. I noticed it bulged a bit more as I breast fed him. I could see the fluid pressure inside that little swollen spot. It would pulse a bit like a heart beat when he was feeding. I don't know if it was the feeding/swallowing or being in a laying down position that made it look like the spot was throbbing. Nonetheless, there was never any discomfort or any other concerns about this spot. It never hurt him either. I remember very lightly touching this spot on his head with one finger gently, just to see if it was the same pressure. I was always worried something might change. Every time I checked it was always the same softness and had a bulge to it. His neurosurgeon was not concerned. He said as long as there were no other symptoms and as long as it doesn't get worse, not to worry. But, to bring him back if something changes. The bulge spot went away on its own around 8 or 9 months old approximately. It is hard to remember for sure when it went away exactly. It seemed to last so long at that time. At 4 months of age I took him for a routine check at his paediatrician. I asked that doctor what he thought. He pressed very firmly on the bulging spot on his head and firmly also on the valve spot with his finger. My son sat perfectly still. It didn't hurt him at all. The doctor said he was just wanting to check if the valve was working right. He said it had to be flexible to drain and not plugged. He wanted to make sure it wasn't stiff. He said if it was stiff and not flexible then it could be blocked. After checking it, he said it was flexible and he could feel the valve flex when he pushed on it. He said it felt like it was working good. At the time I didn't think twice to let this doctor do what he did. I trusted he knew what he was doing. I noticed just 4 hours after getting home from that doctor visit that my son's bulge spot at the incision site was A LOT MORE of a bulge. I was SO worried I could barely take it! I took him to see his neurosurgeon and he said my son seemed to be fine, but also mentioned that the other doctor should never have pushed on my son's Shunt. Of course that sure worried me! What was done, was done! I just hoped no damage was done. He said pushing on it wouldn't have been good for his Shunt. I felt terrible! I was angry at myself for letting that happen, but didn't know better at the time. I was just trusting my son's other doctor, which is very experienced in his field. I had no reason not to trust him. My son was 4 months old when this happened and after that event his spot bulged the most. That's when it became very noticable! It stayed very bulged looking for several months, before gradually getting better all on its own. He has never had a bulging spot around his incision site since. He sleeps on that side too. No problem. I do know now if it ever bulges again some day to leave it alone and to only take him to his neurosurgeon to look at it, no one else! Now the spot feels like a slight dip inward, no bulge. That's how it should feel! I hope my huge report on this topic helped. I know all too well how bad it feels to worry about something we can't change. The good news is everything will work out eventually! I wish you the very best!

      Delete
    2. My son had a bulgy spot around his incision site too for several months. It lasted until about 8-9 months of age, at least. His vp shunt was put in at 3 weeks of age, due to hydrocephalus. He has Spina Bifida. That fluid filled pocket you speak of, he had it too, but just around the incision site. There was no swelling or other fluid pockets anywhere else around the tubing. Just keep your eye on it and take him to his neurosurgeon if it gets worse or changes in any way. My son turns 4 years old in June and has had no recurrences with that. He has also had the same shunt, with no revisions. He can also sleep on his shunt. He is aware it is there and is very careful with it. He is sensitive when I wash his hair and put a shirt on him. He hates the feeling of even a shirt gently brushing over his shunt when getting dressed. But, otherwise, he never complains of discomfort. I wonder if shunts actually hurt that easily or if he is just being cautious and protecting it.

      Delete
    3. My son had a bulgy spot around his incision site too for several months. It lasted until about 8-9 months of age, at least. His vp shunt was put in at 3 weeks of age, due to hydrocephalus. He has Spina Bifida. That fluid filled pocket you speak of, he had it too, but just around the incision site. There was no swelling or other fluid pockets anywhere else around the tubing. Just keep your eye on it and take him to his neurosurgeon if it gets worse or changes in any way. My son turns 4 years old in June and has had no recurrences with that. He has also had the same shunt, with no revisions. He can also sleep on his shunt. He is aware it is there and is very careful with it. He is sensitive when I wash his hair and put a shirt on him. He hates the feeling of even a shirt gently brushing over his shunt when getting dressed. But, otherwise, he never complains of discomfort. I wonder if shunts actually hurt that easily or if he is just being cautious and protecting it.

      Delete
    4. Thank you both for your helpful information. It's just nice to read other mothers and fathers opinions and how their kids shunts were working so you can cross-reference and see if yours is behaving the same way. As of today her shunt looks amazing it's been about three weeks no swelling and it's the size that it should be. Upon investigation with the pediatrician, he thought maybe it could've been the muscle tissue that was inflamed or producing the fluid. Who really knows? She wasn't Experiencing any other symptoms either so that gave me less worry. But I do know that if it does flare up again to keep an eye on it or to actually go and speak with the neurosurgeon which we do see in another two months. It's so nice to hear that both of your children haven't had to have revisions. Gives me hope that maybe she won't have to have them either because that surgery is intense.
      Interesting about the sleeping situation? She sleeps on that side all the time...doesn't seem to be an issue with pain thanks fully so far.
      Nonsensitivities to clothing or being touched yet. The older she gets obviously she'll be able to communicate her discomforts.
      It's amazing what the shunt is doing for her, but in the same sense it's a constant worry that I wish I didn't have to deal with because I am not in control and don't know how she feels. I'm just there for support. Just one of those things. I am thankful for all the doctors and nurses at UC Davis NICU in California. Amazing.

      Delete
  35. Hi Creative! I am no doctor, but I can't understand what stress would have to do with fluid accumulating around the shunt valve and along the tubing. What "stress" is your 6 week old daughter experiencing? That swelling, actually, is a classic sign of shunt leakage. It may be such a slow leak that the swelling dissipates and then returns. I don't quite know what to say. I would vigorously pursue a second opinion on that if I were you. Good luck.

    ReplyDelete
  36. Hi friends. Im working mother with 3children. Had VP Shunt placed on 3rd February 2016 because my csf pressure 28.9. Only took normal shunt due the budget issue (programmable shunt costing 3K). Today are day 10 and i need to go to nearest clinic to remove the stichted. For first 5day in ward, my headaces was decreased and my vission blur getting better. Neuro surgeon discharge and medical ward given me 7day medical leave. TCA Neuro surgeon in 2month. First issue is im having a headache everytime awake and last for few hours (sometimes till next day). Second issue is my vission getting blur worst than before surgery. It makes my head much2 pain. Third issue is medical doc only give me 7days leave and its make me fell uncomfort. Just thinking how can i go to work with unability to drive, and still not recovering. How long usually we can get the medical leave? In warded, i realise that there are a conflict between neuro surgical doc and medical doc. Even when they discharge me, they confius and ask how long i need for medical leave? How i know the appropriate time to fully recover..only 7days..i have to start work in tuesday. Did anybody experience working with vp shunt? When did you start to work? Did i need to go back to ER for my first n second issue? Please advice friends. (IM NOT FLUENT IN ENGLISH. IM SORRY IF MY GRAMMER NOT REALLY GOOD)..IM FROM MALAYSIA. Tq Friends.

    ReplyDelete
  37. My son 7.5 years old had a VP shunt placed 2 years ago, followed by a brain tumour (cpa) surgery. Currently, fortunately, there is no trace of the tumour and the cystic component. Some doctors suspect that the brain might've started draining properly after the removal of the tumour. Yet, as his valve is not programmable, but a medium pressure one, it is impossible to find out if it is operating. So far the risk of the tumour re-emergence has dominated our concerns and we haven't bothered much about the shunt. On the other hand, he is having a normal life and actively involved in sports such as karate so that he can improve his balance, which slightly deteriorated due to the brain surgery. Irrespectively, he hasn't had any complaints so far. I wonder if someone has had an experience with a case like the one of my son? Thanks

    ReplyDelete
  38. I have a programable vp shunt, inserted at 23, 15 revisions, complitcations- perotinitis,bacterial meningitus, cognitive impairment, memory loss. everything in this article I can confirm. Plane journeys are agony and if a storm is coming in its agony. I can hear the shunt clicking away sometimes.

    ReplyDelete
  39. I was born with hydrocephalus
    I have had a couple shunt revisions
    My last revision was about 5 yrs ago, I have been through a lot of pain throught these past years... it will either be in my stomach or in my neck or in the sides and back of my head... I have checked with NS to be aware of any problems and "there arent any problems present" but all the different types of pains wont go away and currently I have pain on the side in which my VP shunt is located, it is a sharp pain on the tip of my shoulder... I cant really move it or it will hurt bad...

    ReplyDelete
  40. Hi Everyone! A few questions I have about post op surgery for shunts. My son has the Strata Valve by Medtronics. I've noticed Josh can be laying down or sitting up and in no pain when all of sudden he starts to cry. Surgery was 3/31/16. I comfort him and he seems to be ok shortly after. We are still giving him either Tylenol/Motrin for pain as needed. I have also seen him tapping his head on a few occasions and was wondering if this is common? What worries me the most is on a few occasions I have been feeding him upright and he starts to cry and I notice his cheek and ear on side where shunt was implanted turns a bit red but just on that side of his face. It has happened too as he is laying down. NO fever and head circumference is the same. We have a follow up on Friday but wanted to check with other parents and see what you all have to say. The NS said he left shunt on lowest setting and he hasn't programmed it to my knowledge until this upcoming appt. Is this common? This is all new to me so I want to make sure its not over draining. His fontanelle is sunken in like it used to get once he was tapped. We were also instructed to lay him flat for first 5 days to prevent over drainage but I sat him up when he was to feed or bath quick. Any info you all can provide would be great. Can the shunt be mal positioned? Perhaps pressing on his lymph node?

    ReplyDelete
    Replies
    1. Hi! Not sure anyone will answer quickly as this is not a very active blog at this point. However...I wonder if your little one is just getting used to the feeling of the thing in his head? I think it's a bit early to tell. I hope everything went well on the visit.

      Delete
    2. My daughter is four months old now and she's had it since she was two weeks old so VP shunt and we haven't really noticed any uncomfortable symptoms that she may have other than maybe tugging at the ear a little bit but other than that we haven't noticed anything.

      Delete
  41. I am 26 and have had a VP shunt since the age of 26. In reading this there are several point I can relate to, however, a lot of it does feel like scare mongering - or at least unnecessarily scary. This is my opinion...

    1. The shunt is coiled near the abdomen, but this is the best and only way the shunt can stretch inside your body. I am unable to feel or tell when this happens.

    2. The shunt on my head is sometimes itchy, but this is normal with anything that is inside your body. There is no way of improving this in any case.

    3. I have never had any problem with my shunt blocking, however, I could imagine that an issue might occur if I go through some kind of trauma, in the same way that hemeroging might occur in a person that doesn't have a shunt.

    4. It's pretty rare for any issue to occur. In over a decade this is the only one I've read about. People I know with shunts also have not experienced issues.

    ReplyDelete