VP shunt issues

In March I went to my eye doctor for a routine exam, during which he found severe pappilodema with hemorhaging in my eyes. He sent me to the emergency room where a CT scan revealed a colloid cyst in my 3rd ventricle. They removed the cyst endoscopically with no complications and after watching my CSF pressure remain high for a week or so, they installed a VP shunt. The neurosurgeon said I was very lucky to be alive considering the size of the cyst and how long I had ignored severe migraine headaches and dizzyness. (for a couple of years). So all in all I feel very lucky and have very few issues. Sometimes I have foggyness in my memories, certain foods now taste very funny, and occasionally I feel a numbness in my feet while I walk around, but I think considering what many have dealt with I certainly wont complain. Anyway, here is what I am getting to. The shunt travels down my left side, behind my ear and across my collar bone, and ever since my surgery I've been experiencing various new problems. First of all, I have very sharp pains in my neck and left shoulder, collar bone area. These are especially bad when I wake up nearly every morning, and especially if I wake up on my left side. They last a good part of the day. I've never felt this before now and I wonder if it is related somehow... Maybe nerves are being effected or something?

I also feel what I think is alot of acid indigestion and a huge increase in bloating and gas pains in my stomach since the surgery. Could my shunt have triggered acid reflux? I also have noticed now, and this has ONLY happened after my shunt, that sometimes when I am eating, my food will almost seem to backup in my throat and be very hard to swallow, sometimes even coming back up on me. My father who has acid reflux believes this means my esophagus is being damaged by acid reflux and not functioning properly. Seems strange though that it never happened until after shunt went in.
Lastly, and this is pretty embarrasing... thank goodness for internet annonimity... I now experience alot of pains in my lower abdomen, rectum, colon, etc... also my bladder I think. And there is a small amount of shall we say...leakage. Is it possible that the CSF diverted to my stomach is seeping out? I have my theories as to why... maybe that is normal for the "Shunted", but it certainly is not normal for me. If any one with a shunt has an idea why I am experiencing these things, or better yet a Doctor would offer an opinion, I would appreciate it.

Thanks.

[LJ52]

Not a medical professional here, so just my opinion.
The pain along the path of your shunt tube isn't unusual, and should get better with time.
Did the cyst leave you with hydrocephalus? It can do that.
If so, you need to tell your NS about the incidences of "leakage", since it is one of the common symptoms of hydro. Any problem with your gait?
If you have a programmable shunt, easing some of your problems could be as simple as changing the setting on the shunt.
What kind of shunt do you now have?

[frederick chopin]

thanks for the response.

Yes the cyst left me with what I believe they called communicating hydrocephalus. the pressure in my head was commonly in the 40s even up to 63 at one point. (uhhh.. PSI?       : P         ) Anyway, even though the cyst was gone, they explained it to me that perhaps it had been there causing blockage for so long that my body was accustomed to overproducing  CSF.

When the pressure never really subsided they went with the shunt. I believe it is called a VP or vetricoperitoneal (sp?) shunt, I guess meaning from my ventrical to my peritoneum?...
And yes it is the programable type.

No problems with my gait, except for the aforementioned numbness in the bottoms of my feet at times.
I wouldn't be surprised if the flow of the shunt is too high. Let's just say my bathroom habits have certainly changed.
Thanks again...

[LJ52]

Again, I'm no doc, so this is just my experience and opinion.
You wrote:
"...they explained it to me that perhaps it had been there causing blockage for so long that my body was accustomed to overproducing CSF."
Actually, what happens is not that you are "overproducing" CSF; it's more a case that the fluid you are producing isn't getting where it should. Probably, a scan would show that you have enlarged ventricles from the inability of the fluid to drain. Your VP shunt does that now.
The programmable shunts are great because they can be reset without further surgery. Be sure you find a reliable site to familiarize yourself with the signs that you may be having a problem with your shunt.
In adults with hydrocephalus (usually called NPH) if the shunt is not draining properly, either from the rate or a malfunction, one of the NPH symptoms that is the quickest to return is incontinence. The NS can usually reset the valve to correct that.
The gait usually associated with NPH is a sort of shuffling, and some people say they feel like their feet are trying to stick to the floor or like there are magnets on the bottom of their feet.
In general, hydrocephalus in adults is being seen more and more frequently because of education on th eissue. Even though your illness was probably caused by the cyst, spread the word that if you know someone, younger adult or elderly, who has the triad of hydro symptoms (gait problems, what might seem like dementia.. memory problems, etc, and incontinence), and appears to have Alzhimers or Parkenson's syndrome, please think of the possibility that it could be hydrocephalus. If you would like a good site for adults with NPH, please feel free to e-mail me. Best of luck. (***@****)

[dh77]

My father was just diagnosed with hydrocephalus.  He is 83 and has developed all of the symptoms you mention in your 8/14/07 reply to f chopin.  Would you please post the address for the site for adults with NPH.
Thanks.

[jadiee_x]

hi,
i had vp shunt revision 3 weeks ago and 5 days later i had my tube reinserted due to migration in the peritoneal cavity... since that night of surgery i too have had very bad pains in my lower abdomen and all over that area you mentioned. like sharp shooting pains and stabbing form the inside??

ive been researching this as im currently unable to go to my hospital and ask as im in spain for another week! so this will have to make do.
but several people with VP shunt have been complaining of EXACTLY the same pains in the colon and lower abdomen spot on and some of them have been assured by surgeons that its their tube poking down there and triggering nerves. you can get this seen to and have surgery to shorten the tube or reinserted into a different part of your stomach or even have your VP shunt exchanged for a VA shunt, where the tube leads to your atrium of your heart instead of your peritoneal.

hope this helps =D  good luck x

[cobwebs]

This probably sounds like a weird question. A friend has an infant with a VP shunt and we were wondering if it was OK to tip her upside down when playing, and if she might be able to feel a sensation of increased pressure if she was upside down. Thank you!

[samsoncomics]

Here is an article I just read due to interest in VP shunts when I came upon this blog site.  It seems to corroborate the one lady's claim that she felt better sleeping in her recliner.  This allows gravity to work and drain her shunt as opposed to lying flat when sleeping where her abdominal pressure could stop the CSF from draining into the peritoneum.  Also, to clear things up, the VP tube in the abdomen does not go into the stomach.  This seemed to be implied by one of the bloggers.   It seems to make sense that if there is enough fluid draining in the abdomen that it could put pressure on the organs nearby.  Also, it seems to make sense that being obese or constipated could adversely affect the VP shunt's drainage.  So it seems smart to maintain a safe weight, be upright most of the day and don't overeat at any one meal.  There's probably a bunch more good ideas out there.
It doesn't seem to have a rapid enough response for people suffering with these problems.  It's a shame, but perhaps there is a support web site out there or you folks could start one!

Oh yeah, I also read about an LP shunt.  I'm not sure if that would be an option for any of you but it is a shunt from the Lumbar spine to the peritoneum.  This would allow drainage without going into the brain but would require communication from the ventricles in the brain with the spinal column I assume.  Talk with your NS about it.

Well, here is the article I found on Medscape....best of luck!

Important considerations when determining appropriateness for VP shunting include predicting shunt-responsive INPH, degree of surgical risk, including the individual's ability to tolerate anesthesia, and the severity of comorbidities. The neurosurgeon will also investigate the condition of the patient's abdominal cavity. A history of adhesions or peritonitis and previous abdominal procedures will be evaluated, and may exclude the patient from VP shunting. The surgeon must estimate abdominal back pressure in the peritoneal cavity that will receive CSF drainage, because underdrainage may occur due to absorption incompetence (Christiansen, 2002). Proper VP shunt function is dependent on the pressure differences between the ICP and abdominal cavity. Pressure in the abdominal cavity is normally lower than ICP so that CSF will flow into the abdomen. Any decrease in CSF flow into the peritoneal cavity must be investigated, focusing on conditions within the abdomen. Consideration must be given to the effects of obesity, constipation, small bowel obstruction, or ileus. If present, correction of any condition resulting in increased abdominal back pressure must be resolved to allow proper CSF diversion via the VP shunt (Bergsneider et al., 2005).

[Cath278]

To samsoncomics. Thank you for the very interesting article! Cath278.

[Grainne85]

Hi, I am a 25yr old female who was diagnosed with extensive venous sinus thrombosis 6months ago. This is a Blood clot in the main vein of my brain. It was originally treated with blood thining tablets but I suffered a papilodema,I had double vision due to benign intracranial hypertension. The pressure was so high I had a lumbar puncture to help release some fluid which in turn gave me major low pressure headaches. I had a lumbar shunt inserted because my ventricles in my head are so thin. This shunt doesn't have a valve therefore it constantly drains and in my case over drains. I begged my surgeon for months to shut it off. The past 6months I have suffered excrutiating headaches and finally had my shunt tied 3weeks ago. After only 3hours I started having worse headaches+couldnt stop vomiting. I was rushed back into hospital and had a VP shunt put in. After this operation I woke up and felt amazing relief for the first time, no headaches or sickness and it felt great to feel normal again. I got out of hospital+had been doing really good getting my life back until last friday evening. The scar on my head opened slightly at the bottom and there was clear fluid flowing from it. Of course this turned out to be CSF fluid. I had a ct scan which showed the shunt is in place correctly and the doc put some stitches on the wound.  There was no leakage on sat but on sunday morning there was slight leakage from the wound. There is no infection but I remained in hospital for a further 3days with one more leakage. My surgeon let me go home for a few days to return 2moro. The problem at the minute is that the surgeons don't know why there is fluid+where its coming from. The shunt is clear+working,I don't have any sickness or headaches and am very well. The concern is that the fluid is by passing the shunt but saying this the surgeon expects there to be a lot more fluid than there is at the minute. If this is the case,due to my thin ventricles there is more complications. I don't want to have anymore operations if they aren't needed as the next one would mean removing the VP shunt and the lumbar shunt,remove bone from the skull to allow the ventricles to widen and have an external drain for a few days to then have another VP shunt inserted. Has anyone heard of this at all as to why there is fluid coming out and what other possible outcomes there are? Please help!!

[msjodie4evr]

hi, my daughter was born with hydro and had her first shunt placed at 2 weeks. she is now about to turn 13.  your child can be treated completely normallly.  You will want to be mindful of things flying at the head ie:balls and be careful of activities and sports that can cause falls ie: skating, biking.  always wear protective head gear.  A sharp fall while playing with her dad caused a hard knock on the head and induced a seizure.  That only happened onced but that was enough for me. Hope this helps...

[lu7997]

I just posted a similar concern on abd pain and my VP shunt.   It is so bad it drops me to my knees at times. My doc tells me to walk.  (hard when I can't stand).   The tube migrated and is scraping my pelvic bone and poking my uterus, rectum, bowel, and other internal tender spots.  I hate it.  Than they tell me loose weight to make it feel better. And I want to scream.  How do I exercise to loose weight when it hurts so damn bad.    Anyways.   I hate this whole thing. And I am so sorry u are going through it too.    My shunt didn't help relieve my symptoms much.  But it did decrease my pressure and allow my herniaion to drop and now meds finally help.  If I could just get rid of the darn tub in my pelvis I would be set.    

And mine is on the right.   I can NOT sleep on my right side at all. If I accidently do.  I am in trouble in the morning. It's like I block the tube.    And back sleeping unless propped up leads to a new set of problems.  So I would suggest for u. Right side sleeping.   With your neck and back well supported.    Talk to ur doc about some prilosec 20mg a day to cut back acid refulx.  (no doc.  Here. But that is an OTC dose. But never take until u ask a doctor).  

Good luck.    My hydro left me with little feeling in my hands and feet.  Bad vision and a whole list of crap. And no doc will get past my weight to help me fix them. Even though nothing started until I was in a car wreck and have a 5mm herniation which half my docs think is the problem and half think is irrelivant.    Oh well.  Day by day right.  : ).  

[Dreamsareforgotten]

Hi ive never posted before but I have psudotumor cerbri (spelling problly not right oh well) but I get a lot of you really I have both a vp shunt and a lp shunt the lp shunt is temperaly clamped off due to overdrainage issues but with me one seems like its not enough but both was to much becouse now im dealing with I believe high pressure headaches again my headaches are very hard to tell if they are high or low becouse the symptoms are the same as the low and high my nurolagist (again sorry about my spelling I havent been sleeping well at all) said my case is very complex we have done about everything you can think of from meds to botox to weight loss (and ive loss 96lbsin9mo) to herbal and still so these last three weeks have been he¢@ if you get me I cant sleep even with sleeping pills and heavy pain meds but maybe 45min to 2hr a night im just glad im not alone but do so dearly wish I had my life back I go for a MRI tomorrow and I just pray its not another oh we need to admit you again sence being diagnosed 4yrs ago I have not got to spend a christmas at home with my children and husband not how I imagined id raise my family when I was growing up dreaming of having children and the memories we would make some memories huh mommy always sick and in the hospital or not being able to remember things or see very well or walk without help what fun well I wish you all the best of luck and happy holidays melonie :(

[Dreamsareforgotten]

Hi ive never posted before but I have psudotumor cerbri (spelling problly not right oh well) but I get a lot of you really I have both a vp shunt and a lp shunt the lp shunt is temperaly clamped off due to overdrainage issues but with me one seems like its not enough but both was to much becouse now im dealing with I believe high pressure headaches again my headaches are very hard to tell if they are high or low becouse the symptoms are the same as the low and high my nurolagist (again sorry about my spelling I havent been sleeping well at all) said my case is very complex we have done about everything you can think of from meds to botox to weight loss (and ive loss 96lbsin9mo) to herbal and still so these last three weeks have been he¢@ if you get me I cant sleep even with sleeping pills and heavy pain meds but maybe 45min to 2hr a night im just glad im not alone but do so dearly wish I had my life back I go for a MRI tomorrow and I just pray its not another oh we need to admit you again sence being diagnosed 4yrs ago I have not got to spend a christmas at home with my children and husband not how I imagined id raise my family when I was growing up dreaming of having children and the memories we would make some memories huh mommy always sick and in the hospital or not being able to remember things or see very well or walk without help what fun well I wish you all the best of luck and happy holidays melonie :(

[m_e_l_49]

Hi all,

I was diagnosed at 21 with pseudotumor cerebri (I am 26 now) after having dizziness, vertigo, optic nerve swelling that led to complete vision loss (before having surgery) and severe headache. My symptoms started with dizziness, which eventually became vertigo; then in Jan 2009 I was diagnosed with Bells Palsey and my entire left side of my face was paralyzed. The first week of Feb I was experiencing headaches that wouldn't go away with advil, Tylenol or exedrine migraine, and with that started vision loss. Within 3 days I completely lost my sight and went to the hospital. My CT appeared normal but when I had the spinal tap done, the doctor doing it screamed, "Whoa! I never seen it do that before!" (Not really sure how a spinal tap is done, but apparently it was enough to immediately see I wasn't okay). I had a temporary VP shunt placed in my head and bilateral optic nerve sheath fenestration to relieve the eye pressure. A week later the neurosurgeon implanted the permanent VP shunt since the temporary one was working.

I gained back some of my sight; I am considered legally blind and barely have any peripheral vision but even in my fuzzy eyesight I am able to read, bake, cook, clean, etc. I just can't drive, and I have problems with depth (like realizing I'm about to step off a curb) and color blindness. I, too, noticed I started getting acid reflux after my surgeries. I never had a problem before, and I'm honestly afraid to even say my theory to a doctor because I don't want the doc to think I'm a hypochondriac--but it DEFINITELY only happened after my surgeries.

Also, I used to be a stomach sleeper, but now anytime I lay on my stomach it builds the pressure in my head, so I had to learn to be a side and back sleeper. In addition, and this only happens when I have nightmares, I build a pressure headache when I sleep on my right side (the side where the shunt is). I think when I have nightmares I must unconsciously press my head into the pillow really hard, because I noticed when I wake up from bad dreams that's what's happening and I, too, feel like I might have blocked the shunt from working in some way. Other than that, sleeping on my right side is fine. Luckily no lower abdomen pains like many of you are reporting.

However, I do notice that I have learned the difference between my headaches. I have bad sinuses, so I know when it's a sinus headache. Then there's a headache which is not exactly a headache per say, but rather a discomfort in my head if I press it against my pillow (for instance, when you try to roll your body over in bed and press your head down to move your shoulders). But then there's the BIG one. Haven't had a lot of those, but the first time I did was about a year after my surgeries. It was on a day where it was over 100 degrees (rare in NJ) and I was in the AC all day, but when I stepped outside to help my mom with groceries I got a sudden sharp headache and severe dizziness; the headache felt like my head was going to burst. I called the doc, and since it came on suddenly versus gradually, he concluded it was probably due to weather and the opposite conditions I was in (going from extreme cold to extreme hot--which is exactly what triggered my vertigo before I was diagnosed). After laying down for about 15-20 minutes the headache subsided. I've only had about 3 of those since my surgeries. But in the fall of 2011, I started getting those headaches in mini version, where if I stood the pressure would build but then subsided immediately if I sat back down. Went back to the NS and my CT was completely clear and showed the shunt was working just fine. Turns out that around the same time the symptoms started I was experiencing extreme stress (I was in my second year of grad school at NYU and studying for my social work boards with lots of class and full time internship), and also had an increase in activity for my body (I was interning at a h.s. that is 3 blocks long and would have to walk up 3 flights of stairs and the entire length of the school about ten times a day). In the end, I tried to cut my stress down as much as possible with relaxation breathing and better time management, as well as keeping myself hydrated (which apparently is an important thing to do if you have a shunt) and those mini-huge headaches stopped.

When I was diagnosed with pseudotumor I was 200 lbs. It sounds like a lot for a small female frame, but I played sports year round through college and was pretty muscular (yes, I did have a little fat, but looking at me I was nowhere near obese or "fat"). After my surgeries, though, I ballooned to 269 because I could no longer do 99% of the activities I was doing before. I can't go on an elliptical because the up and down motion triggers weird pressure in my head. I can't do heavy weight lifting because the doc warned I could put too much pressure on the body and hurt my shunt. With my vision impairment I not only have balance issues but find it hard to do a lot of workouts because I obviously can't see all around me, and I can't even walk in the park b/c of the depth issue (I constantly fall on the uneven trails. Don't get me wrong, I'm not someone who's falling over every second of the day--I definitely can walk fine. It's just the setting. And with the vision impairment and balance issues, it's hard to be balancing on one leg with kicking with the other and moving my arms. I can walk on a treadmill if I'm holding the bar. So exercising to lose weight is nearly impossible (not to mention if I exert myself too much I trigger headaches). I lost 15 pounds the past two months by cutting out the fast food and cutting back on chocolate milk. Plus, my portions are smaller. I'm trying to get back down to 200 lbs before I try to get pregnant, because although my shunt was still working at 269 lbs, I don't want to add another 60-70+/- pregnancy lbs to that already very high weight.