Post 1: Jan.21, 2015 2:17AM

I've had a VP shunt since infancy, which has caused tunnel vision, occasional blindness and changed hearing, lack of awareness and automatic actions, labored breathing, irregular heartbeat, various kinds of seizures, cataplexy and narcopleptic symptoms, blurred and doubled vision, hallucinations, deja vu, anxiety and paranoia, insomnia, falling asleep too quickly, fevers and depression. I may have been experiencing blockage of cerebrospinal fluid drainage because of crooked shunt tubing, which was painful in the left side of my chest, tight on my neck and very highly positioned on my skull.

After an extensive series of seizures in early 2010 from excessive drainage of cerebrospinal fluid that caused me to stop breathing and develop tinnitus as well as experience shunt migration, I have dealt with many forms of pain over the past few years that seem to affect my head most. This includes burning and crushing pressure, searing pain, visual changes that have affected my Bergmeister's Papilla-involuntary shaking of the eyes-fatigue, constant, fluctuating and migrating pressure and aching "pinpoints" in my head-especially where the brain was longest deprived if CSF and mostly crushed during the series of seizures in early 2010-neck snapping, burning and stiffness, facial pain, sensitivity to stimuli, symptoms of neuropathy on either side of head-especially where shunt migrated-and in arms and legs-and tightness and gradual further migration of the shunt tubing. Since the shunt migration, I have grown one inch. I'm wondering if this growth has been the reason behind the tight shunt tubing on my head, chest and collarbone. Sometimes, this tubing has become crooked in my forehead by becoming caught on my collarbone or being repositioned by exercise. The aching in my head has become worse during exercise than it used to be.

I've been told by some people on another website that I may have an aneurysm. I''ve also been told that I could be experiencing cluster headaches. I'm not sure how much longer I'll last-as all people are-but what may come because of what I've dealt with and the problems I've been having scares me.

I'm too dependent to help myself financially, but I could help myself as much as possible at home.

If anybody can relate to what I've described, I'm truly sad that anyone would know what this is like but I'm happy to have found some people who may understand this single world in the universe of perceptions.

Thank you.

19 Replies

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  • i am so sorry to he you have suffered so much it sound like your shunt in blocked have they checked it if it has been in since you were a baby is it not about time you had it changed i would at least ask them to surely check it

    i was meant to get a shunt in 2 years ago but the surgeon did more tests and decided to put a stent in instead which caused more problems in the end for me but such is life

    i am now registered blind i had a big stroke and in the past couple of weeks i had a few tia'si loose my balance i have twitches but there is no pointing grumpy as i have done that and noone listens so why waste my energy i might as well try snd make the most of what i have got right

  • I've had a shunt tap from childhood, but I am ignorant of any other work on my shunt.

    I didn't know stents could be placed in shunts; I'm sorry to read that has caused you problems. I admire your attitude-sometimes, our own strength is the inspiration we need to carry on.

  • no i did not have the stent placed in the shunt stent are not placed in shunts

    this time i had the choice of a shunt or a stent well actually 2 stents in 2 narrowed veins so i went for stent was it was less invasive

    stents are placed in veins not in the shunt

    yes is caused me problems unfortunately when they put it in they burst the vein causing a stroke and blindness and much more but you know i am still alive and i have much to live for and much to be thankful for

  • Hi Kady,

    You clearly have a lot to deal with.There are some lovely people on this site,some with shunts,as you have.Agreat place for advice,empathy and even a little comedy to lighten our troubles.Welcome x

  • Thank you very much. I have found places similar and not very similar to this with very kind people. Hopefully, I will have more luck finding some of what I've been searching for here.

  • Hi Kady,

    Welcome to the site.

    You sure have had more than your fair share of problems but suspect you will find others here that have had similar problems as yourself. The support, general chat and humour here does help alleviate the GGRRRHHHH! factor some what.

    I also think that you'll find that most here won't offer an actual diagnoses but suggest you see your Doctor or Consultant unless they have experience of actual issues i.e. the effect of blocked shunt when they may express a suggestion as to a possible cause ,usually with advice to see a medically qualified professional.

    Web site diagnoses are a calamity waiting to happen. The people giving them are unlikely tobbe medically qualified and certainly won't have access to your medical records. If in any doubt see a doctor or consultant they they can either put your mind at rest or sort the issues.

  • Thank you for your words and advice. While I understand what you're saying, I don't have a doctor at this time, so searching for people who may have had similar experiences to mine and learning how they have tried to help themselves is all I can do right now.

    Thank you for your concern.

  • Oh Kady it sounds like it's time for some serious medical intervention. You haven't mentioned doctors or treatment of any kind and it sounds like you've been relying on advice from the internet, which can be awfully misleading.

    Don't misunderstand me ; forums like this are a godsend for those of us looking for support and certain types of advice, but we also occasionally need specialist help from medical professionals, and it seems you need both right now.

    I suggest you contact the Headway helpline which is a free call on 0808 800 2244 where you will receive sympathetic, professional and appropriate advice. They take calls from 9am-5pm Mon-Fri.

    It's good that you've found us and I hope you'll become a regular member here.

    Love Cat x

  • Thank you. My reply to the comment above may be good words to add to this: while calling someone may be stressful and confusing, that may be worth the effort since I've been dealing with these problems on my own for the most part. Thank you for the number; I will, definitely, save it!

  • Hi Kady, sorry to read of your past and current situations, all here at some time or other experienced some of what you're going [gone] through, so yes I'll add my concurrence that you see a neuro specialist asap. See your Dr this week, print off what you've written above and take it with you, then hopefully he'll, with all speed, get you the appointment with the Neuro dept. The word 'perceptions' is right, especially where vision impairment is concerned. You wouldn't believe what I thought I was seeing back in 2013 - it was weird and caused a few laughs on here. I'm just about to have a cataract operation on 1st of 2 eyes and hope that may help although I know its the messages from the eyes to brain etc that count, but I can't distinguish definite features across the road from me at the moment - see a neighbour and I don't recognise who they are.

    Best wishes for your doc's visit and let us know how you get on. Shirley x

  • My reply to the user "sporan" (2nd comment) could be added to this: I'm sorry to read that you're struggling with your vision. I truly hope getting help will take you through paths of recovery.

  • I'm sorry-3rd person.

  • What does the doc say? Can't they do a replacement if it is causing so many issues?

    My brother had many replacements over the years usually due to blockage of infections.

    Visual disturbances, headaches and vomiting were the signs we were told to look out for as a clue to shunt problems.

  • My reply to sporan, the 3rd person in these comments, could be added to this: I'm sorry to read about your brother's troubles. I truly hope he's as well as he can be.

    I'm surprised that I never vomited throughout late adolescence, but I was frequently nauseated and used to vomit very often in childhood-this may have bern because of an issue with my shunt.

  • Something I didn't mention is that some people told me I could have Chiari Malformation; do any of you know what that is? I've done research on it but still don't fully understand it.

  • I truly appreciate your time and kindness.

    I wish each of you well.

  • Hi Kady,

    Welcome to this forum and hope you get what you want from it :).

    I too have a VP shunt.

    I was diagnosed with a brain tumour in 96 and that year I had two operations. The first op was to have the shunt installed (Right side of body, valve behind the ear). The second op was to have the tumour removed.

    Because the tumor was in a difficult position, located on the brain stem, there is a mass of nerves in the way so surgeons had to be careful. Nerves had to be gently brushed out of the way which caused damage which has left me with a slight right-sided paralisys, mostly notable in my face.

    Pieces of the tumour were removed one by one until the tumour decided to calcify, turned into bone. So I was literally "stitched up" but there was still an active piece of tumour which surgeons could not get to easily.

    Anyway, I don't want to ramble on any more with that because there is much more to my background than meets the eye :), but I will add that I have had a second tumour, or cyst to be exact, but that is equivalent to a tumour and I have had a lot of ops in the past. The shunt itself is the main problem right now. Since 96-2005, the shunt had been brilliant. Then I had an op on my back, which I think could have been linked to the tumour, and the surgeon somehow dislodged the shunt! Either he purposely yanked it out of place or during my op when they moved my body around that dislodged it but they would have had to twist me up like some diseased pretzel to do that haha. The shunt tube is pretty long.

    So since 2005 i've had problems with ith my shunt. It blocked in 2006, the following year. Once again in 2008 and again in 2010 where I had two ops. First op was to unblock the shunt, second op was an emergency op to flush it. I apparently had a bleed in the brain and blood got into the shunt.

    Yep, I've had a pretty rough life, but I still try to stand tall :).

  • What you've said makes me wonder about my own experiences.

    Problems with your shunt after surgery isn't very surprising to me; they may be sturdy in many ways, but all pieces of life can have flaws.

    As people, giving life all we can as all we need to do; thay may not seem good enough at times, but passing tome reveals our best efforts. :-)

  • *time

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