You Asked; I Answered – Shunts, Lifestyle & Strange Feelings.

2 Jun

**03 September update: I’ve been asked a couple of times recently about shunt malfunction symptoms so I’ve just posted the answer I gave to a recent letter below as the first question/answer under ‘shunt worries’ (with a few more bits of info!).**

*February Update* I have received a lot of emails overnight regarding this post (all good!)…it seems many of you are finding it useful.  I’ve also had some more questions so I shall keep this post up and update it as more relevant questions come in.  Also, many of you are sharing amazing things in the comments section of each post, so if you want to make contact with others in the same situation as you, have a read through then and maybe reach out if you feel so inclined!  This is a place for sharing and hopefully for putting people in touch too!

So in February I asked if anyone had any questions they wanted answering….and the answer was ‘yes’!

question markYou sent in a whole bunch of questions; some about lifestyle, some about surgeries, lots about strange feelings and ‘is this normal?’ concerns.  I’m so sorry it’s taken till the beginning of June to answer them all.  Things have been very busy on the Shunt Donation Project-front (which actually has developed into so much more than just shunt donation) and I shall update this in a separate post next week. As I got so many questions, many were repeated so I have divided the questions and answers into categories so you can hopefully find the answers you need quickly rather than scrolling through a sea of mixed-up topics.  I have not published any names (confidentiality is key!) and I have answered them honestly (if I don’t know the answer, I won’t try and answer it…although in a couple of cases I have sought expert outside advice – in the form of neurosurgeons!).  I hope you find them all to be helpful!

Shunt Worries

‘What are the symptoms when a shunt fails? Will I have enough time to react and go to the hospital to get treated?’
Shunt failure is the big, dark, spectre which seems to hover over all us shuntees at one point or another! It’s normal to worry about it but I’d guard against becoming obsessive about it as that can be very hard on you…I had my period of that about four years into having a shunt and I had to work hard to stop going into complete panic at the slightest hint of raised pressure. To be honest, in my experience when something has been wrong with my shunt..whether it’s overdraining, blocked or infected..I’ve known straight away. You just feel ‘wrong’. You will probably feel pressure in your head of some sort (this can indicate either low or high pressure as they can often feel very similar), your headaches may well worsen and you may get dizzy. But this can also mean you’re just on the wrong pressure and may need a shunt setting adjustment, not that anything is wrong with the shunt. Of course, you can feel headachey and dizzy if you get a heavy cold or virus too but with a proper shunt malfunction, the symptoms can come on pretty quickly. Uncontrollable vomiting is another common symptom with a blocked shunt and your vision may also be affected; my last malfunction made the vision in one of my eyes go very blurry. These symptoms are usually associated with shunt blockages or overdraining.  With an infection, believe me you’ll know about it! I used to ask my surgeon ‘so does it feel like ‘flu?’, before I had my first and he said it does but it’s more a ‘head flu’ and far more severe…he also said I would just know. And I did. When I got my first infection, I knew right away that I didn’t have ‘flu!  I had never felt so ill.  I had a temperature, my head was raging and my shunt tract was red along my neck; I literally couldn’t move and if felt like the whole of the problem was inside my head – which it kind of was as the CSF was infected!  I think you are right to be concerned about how much time you have to get assessed as waiting times in A&E are notoriously long. But they do tend to move a lot faster when you tell them you’ve got a shunt. If you are really suspecting a shunt malfunction, tell the doctor/ambulance staff that. Be direct and they will no doubt get you into the scanner quickly. If in doubt, go and see your doctor or call the secretary of your neurosurgeon and ask to have a quick chat with him/her. They usually never mind! It’s fine to be wrong and have your mind put at rest.  But as I said, don’t panic yourself into a state over it. You may well have no problems at all. Bear in mind that people tend to post about issues they’re concerned about on here as they are looking for advice or just to sound off but there are a great many people with shunts who just trundle along quite happily! Hopefully you’ll be one of those!

Have you ever noticed a throbbing pain on the side of your head that your shunts on near your temple/near your ear? I’ve had them a few times and was wondering if it was normal lol’.
Yes it’s normal…and usually caused by scar tissue.  Scar tissue forms naturally after our body’s tissue is damaged.  The external scars we see, but the internal scars we don’t.  Bruising and scarring goes on under the skin as well as above!  It is fibrous tissue made of collagen which is produced to replace the injured skin.  The downside is that being fibrous, it isn’t flexible and can feel not only tight, stretched and uncomfortable but can also cause a considerable amount of pain if a nerve gets squeezed or pinched by it during it’s formation.  I’ve had scar tissue pain around my shunt valve, especially on my last shunt which was operated on over 15 times before it was replaced.  The skin around the valve became so thin it eventually broke down altogether and you could see the shunt valve itself through a little hole in the skin!  (NOT normal though so don’t worry about that!).  I couldn’t touch the area.  It was a sharp, stabbing pain which would come and go (the cold especially brought it on) and I couldn’t lie on it.  I went to my neurosurgeon, Mr Watkins, and he put me on some medication ….I can’t actually remember what it was now but it helped considerably with the pain.  It’s a complicated problem because operating to remove the scar tissue will only produce scar tissue!  If you have sharp, stabbing or throbbing pain anywhere surrounding your shunt, go and see your surgeon.

‘Hey! Have you ever have a cyst like “thing” going on right by the abdominal scar of a vp shunt?’
I haven’t personally had this but I know a few who have. A couple of them needed to have antibiotics, one had to have it drained and removed and another one just kept an eye on it and no action was needed.  Internal cysts can sometimes be caused by fluid build-up of CSF in the abdomen although this is pretty rare (known a pseudocyst).  They can form after multiple revisions or infections and can get pretty large, causing stomach distention and pain.  These are rare, however, and more commonly happen in younger patients.  Usually cysts on top of the skin contain fluid or semi-solid material and can result from infection.  Skin which has been operated on can become lumpy and bumpy; I have a couple of very ‘textured’ scars on my stomach!  But if you have a cyst, it’s best to get it checked out.  If you feel generally unwell  in addition, it could be a developing infection.  Keep an eye on it and if it’s bothering you, go to the doctor.

‘So this noise I’m hearing behind my ear where my shunt is…IS it my shunt?  Does it mean something’s wrong? It’s starting to worry me!’.
Don’t worry.  It’s very, very, very likely to be your shunt valve working!  When the shunt opens to drain fluid, it can cause a sound very alike to buzzing; it just means that the mechanisms are shifting to allow fluid to drain.  My shunt buzzes a heck of a lot but as Mr Watkins once said to me; ‘it should be a reassuring sound, because it shows that everything is working’.  Well, yes it’s reassuring but depending on how close the valve is to your actual ear, it can also become as annoying as hell!  By the way, if your shunt doesn’t make any noise, please don’t worry.  Some don’t.  My first shunt gurgled sometime but no buzzing happened…which is why when my new shunt was put in, I freaked out a little.  If you feel physically unwell when the buzzing is going on, you may need to check everything is working okay.  But if you feel fine and it’s just the noise that’s bothering you….well unfortunately there’s nothing you can do because even if you put your fingers in your ears, you’ll still hear it!

‘It’s been a couple of months since my shunt surgery (I had a programmable put in) and I still feel awful.  I can’t get comfortable and I was hoping I’d feel better than this.  Does it mean the shunt isn’t working?  What should I do?’.
I got a lot of questions along these lines. And I feel your pain.  Make no mistake, if somebody cuts open your head, drills through your skull, burrows a tube into your brain, all the way under your skin, down your body, into your abdomen and starts syphoning brain fluid out of it and then staples you up, you’re going to feel pretty crap.  For quite a long time.  Even if you previously had high pressure, it doesn’t necessarily mean you’re going to feel miraculously better once that high pressure starts to be relieved. Your brain may struggle to adjust to lower pressure.  You can get vertigo, tinnitus, nausea and horrible head pressure feelings and this can go on for a few months.  The key is to a) have patience and b) don’t be afraid to go to your surgeon if you really cannot cope with it.  It could be that you need your shunt adjusted again.  There is a window immediately after your surgery where you just have to rest, recover and take all the painkillers they give you…and even then it’s not pleasant.  But after about six to eight weeks, if you’re still feeling really bad, it’s probably time to see your surgeon to discuss what happens next.  It took me a year to recover from my second shunt infection which resulted in a full shunt revision and new pressure settings.  My body just couldn’t settle.  But I got there.  And so will you (and very likely in far less time than a whole year!).  Keep communicating with your surgeon and persevere.

‘What do you do when you feel bad all the time…it seems to be one thing after the other with me and I don’t like bothering my surgeon!  Should I only contact them when it’s really, really bad?!’
I got a few similar questions to this!  I really feel for you all because for ten years I was that patient too…I had one thing after another going wrong with me and I literally spent most of my thirties being ill, having surgery or recovering from it.  To give you a better idea, in 2008 the only month that I wasn’t in hospital was September.  For over ten years I had brain surgery on average once every seven months, which when you factor in the recover time, is a long time spent feeling bad!  Neurosurgeons are there to help you.  That’s why (and I know I bang on about this) finding one you can communicate with, who listens to you and who takes you seriously is CRUCIAL.  Mr Watkins is not my first surgeon; he’s my third.  I count my blessings I found him but it took four years of gruelling treatment and uncertainty before I decided enough was enough and that I really needed a different surgeon.  You will get to know your head very, very well if you have hydro!  Listen to it.  And take heed of those ‘gut feelings’ because believe me, they’re often spot-on!  You can feel pretty grotty with shunts without there being anything seriously wrong; it could be the weather, the fact you’re dehydrated or you may need a simple pressure adjustment.  But if you are feeling rough and it’s not getting better, call your surgeon’s secretary.  Make that appointment.  If it’s nothing, your mind will be put at rest but at least your surgeon is also learning triggers which are not good for you; it will help them build up a better profile of your individual situation and of what works for you.  You don’t need to go running to A&E with every little twinge, but if you’re really not feeling good, ACT.  The sooner you’re investigated, the sooner you can get the right treatment and your mind can be put at rest.  As Mr W said to me when I first met him and apologised for turning up in the hospital AGAIN, ‘I’d rather you were here so we can get to the bottom of this than at home steadily getting worse and me not knowing about it’.  True words, spoken by the sort of surgeon you should have or be seeking to have!

‘Does the weather really affect heads?  Because I seem to feel worse every time it rains!  I don’t think my surgeon would buy that though!’
YEEESSSSSSSSS weather affects us! And don’t let the doctors tell you otherwise.  Think about it.  How many non-shunted people have you heard complaining of headaches when it gets stormy?  Quite a few, I would imagine.  If you throw a shunt into the mix, it’s a little more complex.  I used to suffer a lot with weather changes but when I got my Miethke shunt, it kind of put a stop to it all.  Sometimes if it’s extremely wet and windy, I can feel it.  And I generally don’t like seasonal changes (Summer to Autumn or Winter to Spring).  But I know a lot of shunted folk who really do suffer.  It can be a good idea to keep a diary of when you feel really bad and make a note of what the weather is doing that day; you may start to see a pattern.  If you can, make a note of the weather forecasts and try to plan ahead a bit, so if we’re entering a spell of really bad weather (or whatever type of weather which is your trigger) maybe reduce your plans for those days.  Take it easy a bit, have the painkillers on hand and see how you go.  On the plus side, if you do discover a pattern related to the weather, it can be a relief in itself to know it’s not the shunt playing up!

Lifestyle

‘Any words of precaution or advice re long distance flying – problems encountered at security gates etc?’.
Generally people with shunts can fly.  I know many who do.  I choose not to, primarily because I have become so pressure-sensitive over the last fifteen years that even driving up into the local hills can affect my head badly if the weather is wet.  I encounter pressure issues just standing upright at the moment, so I don’t think that flying thousands of feet into the air would be the best idea for me. I also don’t relish the thought that if I do get ill on the flight to wherever it is I’m going, I’ve then also got to get home!  I think you have to be the judge of whether you fly or not…and I would always run it by your surgeon, especially if you planning on a long-haul flight.  Some people are absolutely fine with it but some are not. A friend of mine had to fly to South Africa and after a bad initial flight (she became quite unwell on the plane and wasn’t good for some days afterwards), her surgeon gave her medication to take before, during and after the flights.  And even though she didn’t feel great, she got through the consecutive flights a whole lot better, so medication may be a possibility if you’re worried. You can always start off with a short hour-long flight first to see how you go before going for a long-haul. Regarding the metal detectors, I would say carry a shunt card (you can get them if you’re in the UK from Shine Charity).  That way you can avoid going through and they ‘wand’ you instead (but you have to instruct them not to wand over your shunt valve!).  Some shunt models these days no longer use magnets – mine doesn’t – but to be on the safe side, I’d walk around the detectors instead of through them!

‘Have you experienced any issues with trying to get a job since you’ve had hydrocephalus?’
Yes I have.  I have worked from home for most of my shunted life, after initially trying to return to my old, full-time, office job and lasting only three months!  Again, it depends on the individual; I know so many people with shunts who have such a complex array of fluctuating symptoms that they don’t work at all and some (but to be honest only a small handful) who work full-time.  It irks me no end with the recent skewed rhetoric of people on benefits being ‘scroungers’ or ‘fraudsters’ which seems to have seeped into the mindset of many in the last couple of years (thanks in part to both the government and the tabloid media).  Because let’s face it, it’s hard enough living day-to-day with a condition like this…being told you can’t do your job any more can absolutely floor you.  We need a purpose to get up every day to feel complete and having no job or opportunity to work can be extremely difficult.  However, there are certainly things you can do to improve your chances of work.  Firstly, think about what you’re good at.  It doesn’t have to be office work.  You might be creative and make amazing collages or artworks, you might be great on the piano or you may love writing.  Could you make any of these work for you from a freelance perspective?  Could you teach piano?  Could you proofread documents for people?  Could you set up a website selling your creative goods?  It may seem farfetched to you at first but anything is possible…even when you’re not well a lot of the time…if you put your mind to it.  Some charities and organisations can give you some great advice and help and despite my frustration at some of the statements issued by the government recently, there are some good resources on the government website; try Scope, Shaw Trust,and help page at gov.com.  By the way, most of the help resources refer to ‘disability’; that seems to be the blanket term for people who are physically disadvantaged either by chronic illness or disability so don’t rule them out if you think the term doesn’t sum your particular situation up very well!

I  set up a business teaching singing from home for many years.  When I was well enough, I worked at stage schools and music studios.  When hospital stays hit, I went back to teaching from home when I recovered.  After a particularly nasty shunt infection in my abdomen which resulted in long-term pain, singing wasn’t as easy so I put the word out there and found some work-from-home opportunities via friends.  It’s amazing what will come your way if you put the intent, thoughts and word out there.  Try working part-time in a shop or office and if it proves to be too hard, don’t despair…sometimes we just need to think outside the box a little.  If you cannot work at all, maybe try volunteering one day a week to get you out of the house and feeling productive.  Maybe do an online course or take up a hobby which truly inspires you.  The most important thing when it comes to working or trying to work with a chronic illness is NEVER FEEL GUILTY.  You have enough on your plate without a guilt trip getting in on the act.  Ignore the ‘get people back to work!’ cries from the DWP; if you really can’t do it, you can’t do it and that is never your fault.  I have received a lot of emails recently from people worried sick about DWP work assessments coming up but I’ll cover that in another post another time (soon, I promise).  Take your time, think about what you’d like to do and see if you can make it happen.

‘I read your post about hangovers not sure if I should actually drink at all and my surgeon never mentions it.  Advice?’
That was the last hangover I’ve had! It truly put me off for life!  My advice is to be sensible; if you have a drink and find that it gives you a headache, limit yourself to that one or don’t drink. If it’s okay, probably you have no need to worry as long as you don’t go binge drinking or do anything silly.  I get a headache from one drink so I don’t often drink at all these days. I had a glass of champagne on Saturday at a friends 40th but I made sure I drank PLENTY of water before and afterwards so it wasn’t too bad.  I just prefer these days to not indulge.  At all!  Bear in mind the dehydration side of things…if you have a shunt you need to drink more (water!) than most anyway on a day-to-day basis, so having dehydration after drinking isn’t a good idea.  Just up your levels of water if you are drinking, watch the amount and be sensible.  And you’ll probably have no problems.  Or hangovers!

‘I’m 17 and love gigs but I can’t stand loud noise since my shunt was revised last year.  I either don’t go, or go and suffer.  The cinema is just as bad.  Is there anything I can do?’
Yep..for the gigs, take earplugs.  I’m serious.  I love my live music too and I can go quite happily if I take my earplugs (foam ones).  Yes it’ll muffle things and the music won’t sound as good but it’s better than missing out altogether.  Regarding the cinema, that’s a little harder as the noise levels go up and down.  Once I went and took cotton wool as well as foam earplugs and the cotton wool was much better!  It protected my ears enough but enabled me to still hear the dialogue.  I have tinnitus in my left ear from my first shunt surgery and ever since then haven’t been able to stand loud noises (thunder, balloons popping, cars backfiring, fireworks – I hate ’em all!!).  So cotton wool and earplugs are my new social friends.

I hope these questions and answers help some of you….don’t forget, you can always ask more! I’m going to address this blog more frequently now the last few months of hectic-ness are over so I’ll get back to you more quickly this time. Have a good rest of the month, y’all!

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56 Responses to “You Asked; I Answered – Shunts, Lifestyle & Strange Feelings.”

  1. mark hanson June 2, 2015 at 8:05 pm #

    Thankyou Jordan! I understand busy or used to! Its reassuring to hear from someone who has suffered as long as yourself (no dissrespect) and understands these issues! I,ve been struggling with it for nearly 3 and a half years only having my shunt placed in october.It was in for 4 months and after several problems taken out and replaced.The first shunt was a i,m not sure about its make i was so ill but i believe it was an improvment on previous shunts but did not work for me!It has been replaced as i say with a codman i know that much and has been reset for the 4th time and is at its lowest setting i mean its draining as much fluid as possible.It has taken 2 weeks but seems too be working better,famous last words!Jordan my question,is it unusual to have a shunt revision (renewal) what seems too be so soon after the original placing?Thankyou! A fellow sufferer!Mark.

    • jordantheheadcase June 4, 2015 at 9:48 am #

      Hi Mark,
      No, alas it’s not uncommon! 50% of shunts fail within the first 5 years and your body can try to reject the new invader! I’m really glad they changed yours quickly when they realised there was a problem instead of letting it drag on for a year or so. I hate to say this but it CAN take a couple of years to find the right shunt pressure. Your needs will change sometimes and adjustments will be needed…and when you factor in the time required to really settle into a new pressure setting (a good could of months), the whole process can feel very slow at times. But hang in there…if you’re feeling better than you were, that’s a good starting place. But be patient. Unfortunately with hydrocephalus, finding the right pressure is rarely a quick fix. Jordan x

      • mark hanson June 4, 2015 at 4:03 pm #

        Thankyou Jordan and good luck mate! Its very kind of you to reply so quickly! Thats really usefull to me with all thats going on i feel better just by being told what to expect!Thanks again Jordan,mark!

      • jordantheheadcase June 4, 2015 at 4:13 pm #

        You’re welcome Mark and I’m glad it was useful. I’ll be updating the post (prob tomorrow now) with a new question or two; it seems a lot of people found it to be helpful as well which is nice! Jordan x

  2. Fay June 2, 2015 at 8:28 pm #

    Thanks re flying advice……daughter is now one and had tumour removed survived had shunt fitted a few days later…..we may wait to fly until she can tell us when she’s in pain it wud be much easier if she cud speak…..she is crawling and trying to walk again so hopefully her speach won’t be affected from the surgery either….thanks again the weather thing is interesting I mystery keep an account of her moods at certain times x

    • jordantheheadcase June 4, 2015 at 9:55 am #

      Hi Fay,
      Aww bless her! She’s been through a lot. It’s a tricky one with flying, because you can’t exactly get off the plane if you start to feel bad. Maybe ask her surgeon what he/she thinks? And if in doubt, I’d say go for a very short flight somewhere to see how she goes before attempting a 4-hour plus flight. Weather diaries are a good idea: we’ve got bad thunderstorms on the way tomorrow so I’ve kept the whole day clear! They either don’t trouble me much or they really, really do so when it comes to storms I always err on the side of caution! I hope she continues to do well and you get a break from being worried sick. Jordan x

  3. Are we nearly there yet Dad? June 4, 2015 at 12:23 am #

    Jordan, I just wanted to say a huge thank you for your blogs. You will never know just how much these blogs have helped me (and I’m sure many others) during recent months. I was diagnosed with Hydrocephalus 2 years ago aged 45. My NS thinks I’ve had it all my life but somehow my brain has compensated for the extra pressure until recently. I’ve suffered with debilitating headaches all my life which I now know to be due to my condition. I had ICP monitoring last November followed by an emergency EVD and VP shunt surgery during the course of the following two weeks. The detailed information contained in your blogs and the knowledge and understanding of this condition from your own personal experience is so helpful and often reassuring. This latest blog has answered so many relevant questions! You truly are an inspiration and i just wanted to say thank you so much x

    • jordantheheadcase June 4, 2015 at 10:02 am #

      Hi, interesting ‘name’ you’ve got there! :). Thank you for your kind words. If these posts are helping even just one person, then I’m happy. I had no resources to turn to and knew nobody who had it (other than myself!) when I was first diagnosed so the first few years felt extremely isolating. I agree, just knowing you’re not alone can make such a difference.
      You sound like me; the surgeons believe I too was born with hydrocephalus and my brain just compensated until it couldn’t cope. I think in some ways it’s harder with an adult diagnosis as it’s such a huge adjustment for the body to make, whereas if you’re shunted from birth, your body adapts as it goes. I hope you’re doing well right now. Jordan x

      • Are we nearly there yet Dad? June 4, 2015 at 3:08 pm #

        Hi Jordan

        Thanks for your reply and apologies for my unusual screen name! I opened a word press account several years ago when I entered Trailwalker (a 100km walk across the South Downs) in aid of Oxfam. The team name was in memory of my late dad. A late diagnosis is very difficult to come to terms with but I am getting there slowly but surely. I have recovered well thank you! I am now back at work full time and am slowly but surely coming to terms with the need for my new best friend! I do however, feel like I want to give something back and want to help others. If you need any help in relation to the shunt donation project I would be only too happy to get involved in whatever way I can. I hope you are feeling well at the moment Sue x

      • jordantheheadcase June 4, 2015 at 4:15 pm #

        Hey, no need to apologise for an unusual screen name…I can hardly talk, calling myself ‘jordantheheadcase’!! Thanks so much for your kind offer. I need to do a lot of work on this (new website up soon!) and I’ll have some fundraising projects on the go later this year for it too so I’ll keep everyone posted in case they want to help so thank you. Impressed you can work full-time! That’s great. I wish I could…but hey, ho! And yes..time is key. Took me about 5 years to really accept my situation and new lifestyle so don’t rush it that’s for sure. All the very best. Jordan x

  4. donnagospo June 4, 2015 at 5:26 pm #

    Hi Jordan, I just wanted to comment with a little inspirational story. My son-Kyle Gospodarek-has had hydrocephalus, and it’s many complications, from the time he was 6 years old. He is an amazing young man! (of course, mom would think so:) His determination and will is unbelievable and his story may help others who do suffer with this condition. He has had over 40 surgeries. He has a rather rare complication to his hydrocephalus-“slit ventricle syndrome.” So he has two shunts-one located in his ventricle and one in his lumbar spine. Now the amazing part-Kyle is actually a forth year medical student who is very close to receiving his MD. He will be the most compassionate and inspiring doctor! He may or may not be able to work full-time, that is yet to be seen. But-he will find his way to help others. His brother started a campaign for him to help with the many costs that his career choice and medical history has bombarded him with. You can also find more of his story here: gofund.me/udzdj3k. I so love reading your blog and hearing other’s stories. And, what you are doing for the “less fortunate” who cannot receive proper treatment is amazing. We need more people like you in our world!

    ps I also want to note that I totally agree with you that NO ONE should “feel guilty” if they can’t work. Everyone’s situation is totally different and we have to accept our limitations-which can be extremely difficult. However, finding a hobby or volunteering is great advise for anyone!

    • jordantheheadcase June 4, 2015 at 5:39 pm #

      Hi Donna,

      Wow! Inspiring indeed! 40 surgeries is a huge amount…I’d well and truly had enough of the whole rigmarole when I had my 20th. I’ve had slit ventricles (they’re incredibly stiff now as a result) so I know what a nightmare trying to sort that out can be. Kudos to both of you for what he has achieved and is still achieving. Thank you for sharing his story and your experience. Jordan x

  5. Shelley June 22, 2015 at 1:03 pm #

    Hello,

    Lots of really good information here. So sorry that you’ve had such a hard time . . . I have obstructive hydrocephalus due to a brainstem cavernoma. I was recently in London having a bolt-on. I also have a Miethke ProGav and it was working, and making noises, but now it’s quiet. My optimal level is supposed to be 4, but my brain wants it to be higher and I feel that an 8 would work. They kindly listened and tried a 10. Then put it down to an 8 at clinic. The problem is that now I can’t hear it working, I feel that the pressure is increasing and now have high-pressure headaches (I’m in a fair bit of pain even though I’m taking 3 x gabapentin and 2 x naproxen per day). I am struggling with energy and getting things done. I am a parent to a daughter of 11 years and have two part-time jobs which also require extra work at home. I believe that there is a problem. I know something is not right . . . so, it’s frustrating – it would be good for them to feel what we feel for a few minutes so that they can help. Don’t get me wrong, they are very good, it’s just that I feel that I’ll have to wait until my memory starts to go and I can’t sleep before I know for sure that it’s happening all over again! I know that I can be virtually pain-free . . . I just need help getting there!

    • jordantheheadcase June 22, 2015 at 1:58 pm #

      Hi Shelley,

      Hmmmm..sounds like a bit of trial and error going on there.You poor thing! Were you at Queen Square for the pressure monitoring? What makes you feel you need to be at higher pressures…did you try that out whilst having the pressure monitoring?The reason I’m asking these questions is because I had a similar experience in October last year. I thought I needed to be on a higher pressure by only one setting…turned out I needed to go up by four! If you are pressure-sensitive, it can be really hard to pin-point the right pressure. The buzzing does tend to be louder the higher the setting so it could be it’s got a lot quieter since it was lowered to 8. Can you hear it if you put your fingers firmly in your ears, stand upright and slowly tilt your head back (so you end up looking at the ceiling)? Rest assured, if your shunt were not draining at all, you wouldn’t be standing by now! It may be worth trying coming down to six for a couple of weeks to see if this improves things. The real problem with high pressure and low pressure is that they can actually feel incredibly similar. You may have been too low on four but now be too high on eight. I would say don’t struggle on like this any longer: ask to be seen in clinic asap (you can absolutely request this) and explain what’s been happening. See what they say but in case the shunt ISN’T working as well as it should, it’ll be safer in the meantime to come down a notch or two on the valve. If nothing changes and you still feel awful, then chances are it is the shunt. The ProGAV is a really hardy shunt so it would be unusual if it just stopped working suddenly after working well before your adjustment. Not unheard of though! To go from 4 to 10 is a pretty big jump so it may be your brain is struggling to adjust and needs a more gradual increase. Also, always remember that as we get older, our brains change so the setting requirements will too. I was on four for years and years. I am now on nine! But we had to do that gradually: if I go up more than one at a time, my head stages a full-out protest. Get checked out…maybe ask your GP to check for any pressure behind your eyes…and let your surgeon know you’re struggling. Keep me posted and good luck! Jordan x

      • Shelley June 22, 2015 at 7:35 pm #

        Hi Jordan,

        Wow, a quick response – thank you.

        I tried putting my head back and felt nothing – but stayed standing. Yes, at Queen Square.

        I was a 5 for some time, then a 3 – nightmare, starvation, then a 7 for a while – better than the other two. My argument was, maybe after having far too much fluid (over a third more) in my brain for sometime I had become accustomed to more. So, they tried putting it up – too high . . . but like you said, maybe I’m pressure sensitive and need some time to become accustomed to the changes.

        I’m also wondering, as hayfever is bad at the moment (although I don’t particularly suffer) and I have been sniffing a lot recently, if I need something for that? I’ll give it a try.

        ST (nurse) suggested going in to clinic – said he’d have a chat with Mr T (in Mr W’s team). ST doesn’t think it’s blocked . . . said it would be unusual. Sorry, I don’t want to use their names!

        Thank you so much, again, it’s so good to have someone to correspond with who understands what b——- hard work it is sometimes.

        Shelley

      • jordantheheadcase July 21, 2015 at 10:44 pm #

        Hi Shelley, sorry for the humungous delay. Blimey, I just use the names of everyone who treats me! I think I asked Lewis at first if it was okay and then I just thought ‘oh, what the heck…it’s all complimentary!’ and carried on. So I know that Mr T is Ahmed and ST is Simon (or Saint Simon as my family refers to him because he’s so great!). I agree with Simon actually….if it was completely blocked, you’d know about it. But it could be sticking intermittently; mine did that once before and I ended up having the valve changed. That was after I’d had a really heavy cold once; the virus thickened the fluid in my head and made it sticky with protein, so it clogged up the shunt valve. Let me know how you’re doing. Jordan

      • Mark Hanson June 26, 2015 at 12:17 am #

        Hello Jordan! Hear i go again.I have just come out of hospital spending 12 days in there due to my codman playing up!It was set at 80 per cent after problems my nurosurgeon decided to turn it to 30 per cent i feel awfull.Should i give it more time or should i get back to my nurosurgeon?Whats your oppinion?

      • jordantheheadcase June 30, 2015 at 7:27 pm #

        Hi Mark, sorry for the delay in replying. Hmmm that’s quite a jump to go from 80 to 30. To me that would be disastrous but then my brain is too sensitive to do anything other than minute changes now. You say you’ve ‘Just’ come out of hospital: exactly how long have you been home? It can take a week or so to adjust to a new pressure but to be honest, I’ve always found that to be true for adjustments going UP the scale, not down. I can usually feel decreases in a pressure setting very quickly indeed and it doesn’t usually right itself if it starts off bad (the same is not true for increases in pressure I’ve found; I can start off feeling rubbish but can adjust over time). I think if you’re still feeling really bad, get in touch with your surgeon and go back up a bit. You may well be headed in the right direction but may just need to go at a slightly slower pace. Good luck! Jordan

      • mark hanson July 7, 2015 at 8:49 pm #

        Hello Jordan! Thanks again,i,ll give it afew days and if no go i,ll get intouch with the people!

      • jordantheheadcase July 21, 2015 at 10:39 pm #

        How’s it going now Mark? Jordan

      • mark hanson July 22, 2015 at 9:17 pm #

        Hello Jordan! Still rough mate but at hospital tomorow for another shunt adjustment.Hope your well Jordan,i,ll let you know how i get on my freind!

      • jordantheheadcase July 23, 2015 at 7:24 pm #

        I’m keeping my fingers crossed for you.

  6. Paul August 10, 2015 at 10:55 pm #

    Hello Jordan,

    Thank you for your blog! It’s very informative.

    3 months ago, I had a shunt put in me after a subarachnoid hemorrhage. To be honest, it kind of freaks me out. I’m worried that it can fail.

    What are the symptoms when a shunt fails? Will I have enough time to react and go to the hospital to get treated?

    Any info you can give would be great.

    Thanks,

    Paul

    • jordantheheadcase September 3, 2015 at 10:51 am #

      Hi Paul, so sorry I’m late in replying to this. Been a busy month! Shunt failure is the big, dark, spectre which seems to hover over all us shuntees at one point or another! It’s normal to worry about it but I’d guard against becoming obsessive about it as that can be very hard to do…I had my period of that about four years into having a shunt. To be honest, in my experience when something has been wrong with my shunt..whether it’s overdraining, blocked or infected..I’ve known straight away. You just feel ‘wrong’. You will probably feel pressure in your head of some sort (this can indicate either low or high pressure as they can often feel very similar), your headaches may well worsen and you may get dizzy. But this can also mean you’re just on the wrong pressure and may need a shunt setting adjustment, not that anything is wrong with the shunt. Of course, you can feel headachey and dizzy if you get a heavy cold or virus too but with a proper shunt malfunction, the symptoms can come on pretty quickly. With an infection, believe me you’ll know about it! I used to ask my surgeon ‘so does it feel like ‘flu?’, before I had my first and he said it does but it’s more a ‘head flu’…he also said I would just know. And I did. When I got my first infection, I knew right away that I didn’t have ‘flu! I think you are right to be concerned about how much time you have to get assessed as waiting times in A&E are notoriously long (are you in the UK?). But they do tend to move a lot faster when you tell them you’ve got a shunt. If you are suspecting a shunt malfunction, tell the doctor/ambulance staff that. Be direct and they will no doubt get you into the scanner quickly. If in doubt, go and see your doctor or call the secretary of your neurosurgeon and ask to have a quick chat. They usually never mind! It’s fine to be wrong and have your mind put at rest, especially during these early days. You’ll get used to how it feels over the months to come and you’ll become a very good judge of what is right and what isn’t. But as I said, don’t panic yourself into a state over it. You may well have no problems at all. Bear in mind that people tend to post about issues they’re concerned about on here as they are looking for advice or just to sound off but there are a great many people with shunts who just trundle along quite happily! Hopefully you’ll be one of those! Jordan x

  7. gill October 24, 2015 at 12:22 pm #

    Jordan thankyou for sharing all this information. Just found your blog today.I have a close relative who has had icp monitoring 18 months ago, being admitted again sometime for further 48 hrs monitor with a view to needing 1st shunt aged 52. Thanks G

    • jordantheheadcase November 24, 2015 at 10:00 am #

      Hi Gill,

      No worries, I’m glad you’ve found it useful! I’m sorry this answer is so late. Has your relative had the monitoring again yet? I hope they get the answer and treatment they need soon. Jordan x

      • Mark Hanson December 10, 2015 at 6:46 am #

        Hello Jordan! I hope your well.Ive been in hospital again this time for 2 brain bleeds to be treated.The decision was to turn my codman up to  200 i believe and assess me for 3 weeks then cat scan for possible operation.My question is on the night that this event the bleeds happend on the same day 2 oclock on afternoon i visited my dentist for a wisdom tooth extraction .Ihad explained my situation that i had a bain tuma which was causing my hydrocephlis bbut he,d x rayed it and said it was straight forward to extract. The dentist told me before going ahead with the extraction that at any time during the event i was to raise my hand to stop the extraction.I raised my hand 4 times to stop as he had difficulty performing the extraction shaking my head violently with his other assistant holding my head.Tooth eventually came out. I went straight home to bed.4 hours later awoke with an explotion in my head managed to get to hospital x ray result was 2 hemorages either side of my front lobe of my brain near to my shunt.2 weeks in hospital.What would your oppinion be? Was the dentist correct do you think in taking the tooth after i had explained my condition ? I am still receiving hospital treatment for the bleeds and a decision next week will be made about an op.I appreciate your comment and would not use it  as a stick to beat him with or though i would like that no i,ll leave that to my solicitor to do as i believe he the dentist should of not perform the extraction because of my condition?Thank you Jordan! Good luck,Mark.

      • jordantheheadcase January 26, 2016 at 12:38 pm #

        Hi Mark, sorry for the huge delay in replying; it’s been a busy time and I’ve not had much time to get on here. I’m sorry also you went through this. I’ve had a tooth extraction whilst having hydro and although it wasn’t pleasant, nothing bad happened as a result. I have no idea if the extraction contributed to the bleeds or if the bleeds would have happened anyway. I think it’s a bit of a grey area for dentists; it’s probably impossible to know if such treatments will negatively impact on a patient. At the end of the day, we give our consent for the treatment to go ahead and there are always risks with any procedure which is invasive that we have done, be it dental or medical. Infections can happen, bleeding, prolonged pain..it’s a risk we always take when we agree to be treated. I think for the future you should consult with your neurosurgeon first before consenting to dental treatment to be on the safe side. If the dentist could see no obvious complications from your x-ray prior to starting, I suppose there was no real reason to refuse to treat you at that stage. Good luck with your ops…maybe you’ve had them by now? I do hope you’re feeling better. Jordan x

      • mark hanson January 26, 2016 at 1:37 pm #

        Thanks Jordon! I have had the ops not nice im afraid but very necessary!I,m in recovery Jordan and as yet touch wood i,m as well as can be expected! Fingers crossed this will help my condition! Thanks for your reply Jordan i hope your well?x

      • jordantheheadcase January 26, 2016 at 2:46 pm #

        Hmm yes the ops are never very nice! I’m glad they went okay…keep on resting up. I am well (touch wood) at the moment thank you. Hoping it continues! Stay well. Jordan x

  8. Karen April 21, 2016 at 5:02 pm #

    Hi Jordan so pleased to have found your blog you have answered so many of my questions already, I acquired hydrocephalus at age of 51 after getting aseptic/post op meningitis March 2015 (I had two surgeries to treat trigeminal neuralgia) I struggled feeling unwell headaches etc eventually had LP pressure was high so had a LP shunt in Jan 2016 , after complications it was removed in March and decided to fit VP shunt on 31/3/16 I have just had a revision on peritoneal cavity end as caught in adhesions from old surgery. I am now more comfortable and adjusting to my shunt which isn’t programmable, on the whole feeling good although very tired but could be due to almost off the steroids which been on for 12 months, hoping to return to work in a few weeks not sure how will cope as a physical job and not helped when you can’t drive for six months
    Thank you for blogging
    Karen

  9. SHERRIE TRUELOVE June 15, 2016 at 7:39 pm #

    This is so awesome. I have always wanted to meet others with shunts..I had about 16 head brain surgeries due to CONYERS leakage..I have a shunt in my lower back that didn’t work well enough so my doctor at USB last resort was the lumbar shunt in my head and when reading your blog..it was encouraging. I have a passion to enhance the lives of people with developmental disabilities but when my journey begun in 1997 in and out of the hospitals up until around 2007 my life has been challenging. I was also wheelchair ed 3 times due to unable to walk…I give Jesus all the Glory..my depression and anxiety has gotten a lot better..Just reading your blog truelove helped me in so many ways. Now I understand why I my mouth be so dry , I am not drinking enough water..my doctor had to remove my taste/smell nerve. So that has been a challlenge. You really enlighten my awareness and I feel our families should learn about what we really have to cope with each day…am searching for a job now that I can cope with successfully. Thank you again.

  10. Frank Hackney June 20, 2016 at 8:02 am #

    i have a problem that I have not had before.
    i was wondering if someone else has had this.
    For the first time since my VP shunt was put in many years ago, I can now feel the shunt where if exits the skull. Almost like it has expanded. I wake up and feel that I am lying on the shunt and have to turn over. I recall this from when the shunt was first fitted in 1991 .
    is is possible to get an infection in such an old shunt? I thought that was far more likely to happen with new shunts.
    what else could cause me to now be so aware (feel)of the shunt and has anyone had this happen?

    • jordantheheadcase June 20, 2016 at 9:04 am #

      Hi Frank,

      If I were you I’d get that checked out. It’s an old shunt and it could be that it’s just starting to wear out. I’ve had two infections and believe me, I knew when I had one! The shunt site itself was red and hot and I felt AWFUL. Fever, severe head pain, body aches and vomiting…all of those will likely happen if it’s infected although at the beginning you can just feel like you’re coming down with a virus. Either way I’d get to your doctor and/or let your surgeon know. Better to nip things in the bud if something is wrong with the shunt than leave it until it’s an emergency. Good luck! Jordan x

      • Frank Hackney June 20, 2016 at 9:34 am #

        you are so kind. Your advice I am sure makes many people feel ‘not alone’ as people without shunts and who have no understanding can’t understand why we just don’t get better once we see a doctor. They have no concept of the on going nature of the problem.Thank you so much.

      • jordantheheadcase June 20, 2016 at 9:37 am #

        You’re welcome Frank. When I was first diagnosed there was nothing to help; I didn’t have the internet, I didn’t know of any support groups or forums and I certainly didn’t know a single soul who also had hydrocephalus which is why I started this blog. Even when we have issues, if we know we’re not alone, we can deal with them much better!

  11. amyvanessasthoughts July 6, 2016 at 1:55 am #

    Thank you so much for touching on the topic of loud sounds. I was born with Spina Bifida nearly 30 years ago and have a VP shunt. To this day I do not like loud sounds such as balloons popping, fireworks, thunder, etc. I’ve been told before that loud sounds used to make me scream and cry as a child. Over the years I’ve heard some say that sounds shouldn’t bother someone like me. So it’s nice to have it confirmed by a fellow shunt patient that, “YES! The shunt is probably the root of why those sounds bother me!”

    • jordantheheadcase July 21, 2016 at 8:44 am #

      Hi Amy, yes it was only recently I put two and two together and spoke to my surgeon about loud noises and he confirmed it to be true; some people who are particularly pressure sensitive can hate loud bangs. I avoid balloons like the plague and wear earplugs during thunderstorms! You find a way to deal with it. But it’s kind of good to know there’s a real reason for it and it’s not that I’m not just being a wuss! Jordan x

  12. Bridgette herald July 21, 2016 at 2:15 am #

    Question… I have a vp shunt with programmable ventricles which means if the pressure is to high they use a magnet to adjust it from the outside of my head. Ive had this shunt with the same pressure setting for 2 years. All of a sudden im having terrible headaches and vommiting alot. The doctor adjusted the valves to lower the pressure coming out. How soon do the headaches and vommiting go away!? And is it possible for it to be the right setting for 2 years now all of a sudden its to much fluid going through? Please help!!!

    • jordantheheadcase July 21, 2016 at 8:42 am #

      Hi Bridgette,

      I have a programmable shunt too. And yes, you can need pressure changes every now and then to keep things steady. You didn’t say how long ago the doctor changed the valve setting but if it was a couple of months ago and you’re still not feeling right, then the chances are it’s still not the right setting yet. However if it’s only been a week or two your brain may need some more time to settle to the new setting. As we get older the brain changes in many ways, so a setting that would have been fine five years ago may need to be adjusted to accommodate those changes. My neurosurgeon says that with the brain ‘you’re always moving the goalposts’….as in what was once the right setting may soon change to be the wrong setting. Give it some time and keep communicating with your surgeon; together you’ll get there. If the symptoms persist on any setting your shunt may need further investigation, but hopefully it won’t come to that. Good luck. Jordan x

  13. Lora September 17, 2016 at 5:19 pm #

    Hi do you have a fb group?

    • jordantheheadcase April 9, 2017 at 12:56 pm #

      Hi Lora,

      No I don’t at the moment but I am Admin for Hydros Unite UK on Facebook; it’s for UK-based people who have the condition so check it out and join if you fit the bill! If not there are a couple of other good ones online; Shine does a good site. Jordan

  14. Misty October 17, 2016 at 8:31 pm #

    Hi Jordan!
    I just came across your page while googling a symptom I am having. I sufferers a subarachnoid hemmorage on 8/7/16 and had a shunt placed 8/19/16. Recently on 2 occasions I have experienced clogged ears like when on an airplane. Has this ever happened to you?
    Thank you,
    Misty Rose

    • jordantheheadcase April 9, 2017 at 1:12 pm #

      Hi Misty,
      Thank you for your post and sorry for the delay! I do actually have problems with popping ears, especially if driving up hills and so on. I can’t fly as my head is too pressure-sensitive but yes, the blocked ears thing is annoying! Do check it isn’t earwax though…sometimes that can be the culprit! Jordan

  15. Sammie pp November 24, 2016 at 3:20 am #

    Please e-mail me the answer. I had a vp shunt place I now have wind tunnel heating am more tired vision is worse
    I had all of these problems before the shunt due to a tumor on my brain stem the doctors all say that the heightened symptoms are because of the tumor I have had MRIS and cats cans and there is no leak detected what is your take on these symptoms please advise thank you

    • jordantheheadcase April 9, 2017 at 1:27 pm #

      Hi Sammie,

      Thanks for your post. I’m sorry to hear you’re having a rough time. I’m afraid I can’t really comment on what might be going on with you as it sounds as though you have a complicated situation, having a tumour on your brain stem as well as a shunt. I can only really advise on hydrocephalus issues; any question which is very medically-based I usually consult with a healthcare professional. Keep talking to your surgeons and ask questions if you still feel unsure regarding what’s going on. All the best of luck to you…keep me posted. Jordan

  16. Lisa Creighton January 13, 2017 at 6:54 am #

    Im 45 next month…. over the last 4 years a small skin tag has appeared.My Where I live its cold and snowy, my skin tag changed and has attached to my head…. lots of itchiness/redness to the point where I live in toques and scarves. After 7 months of complaints and hospital visits. I finally have an appt with a surgeon next week to have it removed.(Jan 15 2017) I live on peppermint oil as it kind of numbs the itch… Im praying once the skin tag is removed the itch will go away.
    Please advise me.
    My vp shunt (spitz holter) was put in at 5 months old.
    Thank you for any if all the feedback. Although I have had this in my head since almost birth. I live in a small town where the Drs dont know whats inbedded im my head.

    • jordantheheadcase April 9, 2017 at 1:32 pm #

      Hi Lisa,

      Thank you for your post and sorry for the huge delay…how are things now it’s been removed? Are they any better for you? Jordan

  17. stephanie jennings February 2, 2017 at 7:46 am #

    Having a great deal of trouble with my husbands shunt, his cognition is slipping and he’s angry a lot, which is unusual for him.
    He’s post tbi with serious frontal lobe and diffuse axonal injuries that caused his hydro so it’s hard for him to realize that he’s getting ” worse” and his ventricles are not changing much….. but he is so much worse! Ideas?

    • jordantheheadcase April 9, 2017 at 1:37 pm #

      Hi Stephanie,

      Thank you for your post and I’m sorry to hear things aren’t going well for your husband. Any behavioural changes should be noted to his surgical team in case they want to have a look. Ventricle size does not always reflect what’s going on inside; mine are quite ‘fixed’ now as they lost their flexibility after years and years of pressure fluctuations. I can have very low pressure but my ventricles can look large. I’d say keep talking to his doctor and surgical team or whoever he sees for his neurosurgical issues. You know him well; if your ‘gut feeling’ is that something is up, you may be right. I’m not saying that there IS a medical problem, but it’s worth chasing it up and getting answers – that will only benefit both of you. All the best, Jordan

  18. Tracy Hunter February 27, 2017 at 7:03 pm #

    Is it normal for the Vp shunt to move location in skull after a few years of having it in the head? It has moved from the front if my skull to almost the back of my skull now. Do I need to see my Nuro Dr?

    THANK YOU

    • jordantheheadcase April 9, 2017 at 1:51 pm #

      Hi Tracy,

      Do you mean the valve itself has moved? I haven’t come across that before. Mine has always stayed fixed in place. If you’re worried about it, definitely see your neurosurgeon…it might be worth emailing him or calling him about it anyway, just so he’s kept in the loop! All the best, Jordan

  19. Brennan Halliday February 28, 2017 at 5:03 am #

    I got my shunt when I was a month old, since then I have had no problems nor revisions. It is just simply there. My neurologist thinks it might not even be working anymore and my natural drainage of CSF has returned. I’ve wanted to join the military for my entire life and being told no was one of the hardest things I’ve had happen. I played football as a linebacker for ten straight years and graduated class president and valedictorian from my high school. I got all my medical paperwork together and tried with every branch, but ultimately had to move on from my dream of military service. I have switch to medical and am going to be in EMS. I want to be a flight paramedic and now I’m being told I can’t because of my shunt. I love that this device saved my life, but now it’s taking it away. It is sooo depressing that I can’t pursue what I want in life because of something that is likely not in use anymore. Have you ever answered questions on shunt removal surgery? I wanna know if more people are going through what I am? I wanna know if you all have found ways around this? Please let me know!!! Thank you for your time, I appreciate it!

    • jordantheheadcase April 9, 2017 at 1:59 pm #

      Hi Brennan,

      Thank you for your post. Ah, the interference of hydrocephalus in our working lives! I never get too frustrated about my situation but my working life is the one area which does get me having to take deep breaths sometimes…like you, I haven’t been able to achieve what I wanted in terms of a career or even just earning enough money to get by and there’s not much I can do about it!
      What made your surgeons say that maybe you don’t need it? Is it just because you haven’t had any issues with it? If so, that’s great. But I think they’d need to test the shunt in some way first before just removing it. I’ve had my shunt clamped off once as my pressures were very, very low (terrible headaches!) which made my team think I may not need my shunt any more as it seemed that both the shunt AND my brain might now be draining. It made sense to me so I agreed to it being tied off for a few days. I would never agree to it again! It was the worst 3 days of my life (apart from maybe my second shunt infection…that was damn awful too). However I do know that sometimes shunts are tied off successfully. It’s not an area I address on here really as my personal experience was really bad and I wouldn’t want to scare anyone who might be facing the procedure. Also, in my experience my headaches were terrible which led to the surgeons believing I may be overdraining due to my no longer needing the shunt. I wonder if you’ve had no issues whatsoever, the shunt might just actually be doing its job well? These are the sorts of things you’d need to discuss with your team. If you do have it tied off, I’d say try it for a couple of days whilst you’re in hospital so if it’s the wrong decision, they can quickly reverse it. With regards to your career, it sounds as though you’ve made a great decision. Best of luck with it and if you can’t fly (I can’t either and probably never will now), maybe try your hand at being a road paramedic…you might just find it as satisfying. We just have to be as flexible as we can when it comes to work, eh! Best of luck and keep me posted. Jordan

  20. Peter Erikson April 10, 2017 at 2:58 pm #

    Hi Jordan
    I have been reading your blog over the last year or so and found your comments to be very interesting and useful.
    However nearly all the problems seem to be associated with headaches or head-related.
    Mine was a walking problem and I cant find anyone responding to your blog who has my particular problem.
    I am a South African (79 years old) and my wife and I lived in London for 9 years up to 2005. During 2004 I tripped and twice hit my head on the pavement while jogging. Soon after that my left leg/foot started dragging so I saw my GP and was referred to the Neurology Dept at St Marys Hospital in London. The Neurologist diagnosed mild hydrocephalus. At that time we then returned to Cape Town and everything seemed normal as I was happily jogging once again.
    Then Just about 18 months ago I could no longer run or even walk – my feet would freeze as if they were superglued to the ground. I was first diagnosed with Parkinsons Disease and was twice placed on drugs for that.
    I ended up at Groote Schuur Hospital here in Cape Town, where they have a very good Neurology Dept. After weeks in hospital and after numerous examinations and tests and head and lumbar scans they eventually diagnosed Normal Pressure Hydrocephalus.
    They referred me to a very good local Neurosurgeon to operate and fit a programmable VP Shunt with the caution that there was a 50/50% chance of it working saying that the operation result would be either diagnostic or therapeutic.
    I did not hesitate as I had not been able to walk for over 8 months apart from shuffling around the house.I could not even do any exercises and my legs were getting weaker and weaker without any exercise.
    Well, I went in for the op on the Monday, went home on the Friday and on Saturday I could walk normally again. The Neurosurgeon said that he set the shunt at a medium setting
    The shunt has been in for exactly a year now with no problems.I am walking normally but at my age it is taking time to rebuild my lazy leg muscles from the long layoff. I no longer jog but can walk and exercise on the treadmill and gym bicycle.
    I get the occasional faint drumming in my head especially when close to rotating machinery like air conditioners or in the car but not that it worries me very much.
    So I wonder how many people have been diagnosed with Parkinsons where the real problem could well be normal pressure hydrocephalus. My symptoms were a dragging left leg and Parkinsons shuffling type gait but no hand or arm shakes.
    So I would be interested if anyone has had similar walking problem that have been corrected by a VP Shunt operation.
    Keep up the good work – your blog is very helpful to the rest of us in the hydrocephalus/shunt fraternity. I will recommend you for promotion!
    Regards, Peter

    • jordantheheadcase April 10, 2017 at 7:49 pm #

      Hi Peter,

      Thank you for your very interesting post. I think there are quite a few areas where neurological conditions have overlapping symptoms and I do wonder if misdiagnosis is quite common. I’m going to ask my surgeon about that one. On my medical notes for some time I was down as having IIH (Idiopathic Intracranial Hypertension), which has similar symptoms to hydrocephalus. However the onset and my specific symptoms didn’t match IIH so they corrected it a few years ago…I do actually have hydrocephalus. However, my surgeon also said to me that I don’t really ‘fit’ any standard checklist for hydrocephalus as my situation has been quite complex over the years. Hydrocephalus is the closest fit for me but it’s apparently still not exact! I don’t get that many posts from people with Normal Pressure Hydrocephalus on here but that doesn’t mean they’re not reading. Hopefully someone will identify with your situation too. Oh and thank you for the promotion offer…earning enough to live on is a full-time job, eh?

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