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*To see the most popular posts about living/dealing with hydrocephalus, have a look at the bottom of this post where you can link directly to them*

I have hydrocephalus.  You may have heard of it.  It’s basically an annoying condition where your brain is unable to drain brain fluid on its own (the way that ‘normal’ brains can) which leads to increased pressure and, if not treated, disability and death.  I’ve had it for seventeen years and in October 2013 I had my twentieth brain surgery.  When you have hydrocephalus, you get used to having only half a head of hair!

My 'usual' look for over 13 years; head bandage & PJ's!

My ‘usual’ look for over 13 years; head bandage & PJ’s!

When I started this blog I didn’t really have a plan for it; I was about to turn 40 and was ticking off a to-do list leading up to it.  However as time went on the true purpose of the blog uncovered itself naturally; people who read it did so because they were generally also interested in hydrocephalus.  Either they had it or someone they knew had it.  Readers started to send me emails about the condition and lots of questions.  The posts about surgeries, shunts, strange feelings in the tubing and so on started ratcheting up the view counts.  So now I write it to (hopefully) try to address some of those concerns, which are exactly the same ones I had when I was first diagnosed.
In 2013 I started to collect some spare shunts to send to Vietnam after seeing a video online showing how in many countries hydrocephalus is a certain death sentence, with no treatment, surgeons or shunts available.  I couldn’t get over that…how lucky I’d been to have been born with hydrocephalus here and not there.  I carried on collecting shunts…then other neurosurgical equipment…and then I realised there was a lot more to do and I’d need some help to do it.  So I collared two consultant neurosurgeons to help me and set up a charity, which became registered in October 2016.  You can visit the website here: Action For Hydrocephalus.  I did the website.  For free.  Using a template.  Please don’t laugh at it (too much).

So this blog addresses two things now; living with hydrocephalus and the ongoing work of my charity (which is just starting out).  Sometimes I write the odd post which is totally unrelated to either.  I get sidetracked a little too easily sometimes (in fact it’s a wonder that this blog isn’t filled with posts about Michael Fassbender).  But I try to stay on track.  I hope you find some things here useful…if you have hydrocephalus yourself, take time to read the comments too; I publish all the questions that fellow shuntees ask so you may have a question you want to ask yourself all ready addressed.

Thank you for visiting and do pop back sometime.  Jordan xx

*Most popular posts:

‘How does it actually feel to have a shunt?’

‘What’s it really like to have brain surgery?’

‘You asked; I answered – shunts, lifestyle and strange feelings’

You can read about what it’s really like living with hydrocephalus (lots of general topics regarding the condition covered) here.

☆ You can read about my Shunt Donation Project (now registered charity ‘Action For Hydrocephalus’) here.

The blog of George Samandouras inspired me to start mine; read his here; it’s fantastic. *update: Mr Samandouras recently made his blog private so I’m not sure it’s readable any more.  I shall check with him and update the link if not.*

The main charity in the UK to help those with hydrocephalus and families affected by it is Shine UK.  Look them up.  They’re fab.  Just click on their icon below. shine

48 Responses to “Home”

  1. Let's CUT the Crap! May 27, 2013 at 3:01 am #

    You are a HERO, an inspiration. I cannot help but I do know two families whose children have shunts but neither of them is your age nor has had as many surgeries. Keep the faith and thank you for sharing.

    BTW, I must tell you your writing is awesome.

    • jordantheheadcase May 27, 2013 at 9:55 am #

      Thank you very much! The positive feedback is certainly helping me keep the faith with this project so it’s very much appreciated. x

      • Toni October 25, 2014 at 3:15 am #

        Jordan,
        I just started reading your blog, I think it is wonderful about the decision that you decided to take on helping others to obtain shunts that wouldn’t otherwise be abel to get access to them. I wonder though, out of sheer curiosity. How in the world were you able to convince the neurosurgeons to assist you with, a task such as this if you are not an MD? Also found myself wondering, if said shunts have been discontinued as you mentioned. How long might they last and have you been told about other complications patients my have ? Why have they been discontinued? Good luck in your endeaveor. You go girl ! I will be looking forward to updates ! Peace out !

  2. happinessheals May 27, 2013 at 2:00 pm #

    Thank you for using the time you have to help others with your condition. Sending you love and light as you inspire the people of our world with your love. Gratitude Dance for You! :~)

  3. meticulousmick May 27, 2013 at 2:18 pm #

    Simply love it, you are fantastic. Simple.

  4. nikyparadise May 27, 2013 at 3:00 pm #

    dear Jordan, you are an inspiration for all of us ! what you are doing is amazing and the positive spirit you have, in spite of all the pain and surgeries you have gone through ,takes more than courage, I hope all your dreams in your F list become real and more !
    thank you, thank you for giving us the opportunity to read about such of special person, my admiration and love to you !

  5. luluchris58 May 27, 2013 at 3:13 pm #

    I found your blog through another blogger and I must say I love it! Thank you for sharing your experience through your blog with us. Good Luck on your journey! I can’t wait to read more post from you.

    • jordantheheadcase June 20, 2013 at 5:14 pm #

      Sorry, I’m so late on replying to these!! Thank you for your interest and support. I’ve just updated (long overdue!) so I hope you have a read. Many thanks! x

      • luluchris58 June 20, 2013 at 6:02 pm #

        Its fine.😃😃 I will be reading your updates soon. I have been so busy I haven’t been able read many blog post. I’m looking forward to it!

  6. travelecstasy June 9, 2013 at 4:51 pm #

    Really fascinating read. When I was a junior doctor I worked in one of the best paediatric neurosurgery units in the UK. At least 60% of the kids I looked after had hydrocephalus and were regular attenders, so got to know them very well. They were all incredibly stoical, in fact, their parents were the ones who would often struggle with the repeat shunt infections/blockages. Hydrocephalus is one of those uniquely chronic conditions that really can just decide to cause you problems whenever it feels like it.
    Shunt surgery is relatively low risk but anyone that has more than one brain op is already part of a pretty exclusive club.
    It’s great reading about your experiences and your f list. To some extent, I can understand what you have been through, albeit from the other side. I will follow your blog with interest!

  7. happinessheals August 25, 2013 at 6:02 pm #

    I love your blog and am awarding you the Liebster Blog Award for passionate bloggers. I hope you enjoy it as much as I did. Sending you love and healing vibes. :~)

    http://happinessheals.wordpress.com/2013/08/25/gratitude-dance-i-received-a-liebster-blog-award/

    • jordantheheadcase August 26, 2013 at 5:22 pm #

      Thank you so much! I am honoured. And slightly embarrassed! 🙂

  8. Gem M December 4, 2013 at 6:47 pm #

    Hi there, I just wanted to say I’m really enjoying your blog. I found you via my Mum and Mr Samandouras’s blog- I have my own blog too which I have included above which I started when I was diagnosed with a brain tumour. I recently received excellent surgery from NHNN and will undergo support and monitoring from them in the future. I just wanted to say I completely agree with you- Mr Samandouras’s blog is fantastic and has inspired some of my own posts too. I wish you all the best and I think your project to donate old shunts is fantastic. I am going to read about your ‘F’ list now- what a great name! Xx

    • jordantheheadcase December 5, 2013 at 1:47 pm #

      Hi there, thanks for your comments. I just had a look at your video; you’re very brave! I’d hate to be woken up during one of my surgeries, even though I know how great the staff are! Who is your NS, out of interest? You look really well in that video, all things considered. I shall keep following. x

  9. sam November 5, 2014 at 5:30 am #

    I enjoyed reading your story. You are an expert as to what you have been through. I just had a shunt placement 11 weeks ago. I have NPH from a brain trauma and I just wonder if you encountered anyone who complained of a vibration feeling as if your in a vibrating bed or standing on a vibrating floor? This is driving me crazy and I do hear a motor running and it’s me!!! I appreciate your wisdom and experience as to where this is coming from.

  10. Rebecca Samuels November 6, 2014 at 7:34 am #

    Hello brave woman. Hydrocephalus had been suspected 10 years ago but now the symptoms are too undeniable. The only thing that scares me is having a child. My son is 17 and I’m a single mom. If anything happened to me he’d be so devastated. And I’ve never loved anyone the way I love him. So my fear is for him. I’m. 66 and have had a full and interesting life. I want to stay in his life for many more years. And, yes, I adopted him when he was 2 days old…..I’m glad I found you and your blog and I’ll keep you updated. Hugs.

  11. Nicky Brown November 30, 2014 at 9:59 am #

    I have just read your blog & thank you for sharing this.
    My Son is 4 and has had a shunt since he was 3 months old & has also had one blockage, he was in King’s College for the first 4 months of his life.
    I’ve always wanted to know how it felt for him as he hadn’t been able to explain. Thank again for this and all the very best to you.

    • jordantheheadcase December 18, 2014 at 10:57 pm #

      Hi Nicky, thanks for your kind comments. Sounds like your son has been through it so I really hope he’s having a trouble-free time right now. I’m sure it’ll be a relief for you as he starts to become able to communicate his symptoms to you…it must be one big guessing game for you! Best wishes to you both and have a cracking Christmas. Jordan x

  12. Ashley Waters January 4, 2015 at 3:31 pm #

    Hi, i have a very important question and i no longer have my doctor to ask because they took my Medicaid away. But i had a shunt put in july 2013. Now it’s different, its in my spine around my left side and in my stomach. They did this to drain fluid from my head. It hurts, i cant do anything long or it hurts. My husband doesn’t get much help or u know bed time cause it just hurts. My headaches aren’t bad. I can feel a crazy slow motion pulse in my head and neck but i can’t get a doctor to help because i can’t pay. I just want to know does feel these symptoms or am i bad off

  13. thea January 9, 2015 at 2:34 am #

    Wow I have just come across your blog and it is so inspiring I have iih and actually I’m at the same hospital as you and under dr watkins also I’m waiting to go back in for icp monitoring and possibly a stent already have a lp shunt and have had 3 surgery’s this year and hearing your story is lovely to know you can get on with life through it all and so cheerfully as you go.

  14. Asiphesona February 16, 2015 at 11:15 am #

    Hi Jordan I used to read and follow a lot of your blogs but I stopped after I lost my 2year old son to Hydrocephalus I guess his was under treated till it got to a point where his brain completely shutdown he couldn’t walk,see talk and play no more but I thank God for you because I knew a lot about hydro he was hospitalised at (Frere Hospital,RSA) for 3months till Heaven came back for him and I’m proud to say I was there every step of the way..you’re blog is a true blessing to us may God bless you!

    • jordantheheadcase April 23, 2015 at 12:33 pm #

      Wow Asiphesona, I’ve only just seen your comment..it’s been a very busy time and I’m just now getting around to focusing on the blog again. I’m so very sorry to hear about your son. What a terrible time for you and your family. Please accept my sincere condolences. I’m glad this blog has helped in some way, even if only a little bit. It sounds as though he had everything he needed from you with your support and your love. Sometimes it frustrates me no end when I hear about patients getting inadequate – or no – treatment and I’m sorry it happened to you. Every case is so individual and unique, however, that it makes hydrocephalus a very difficult condition to treat so I can’t judge too harshly on the surgeons…it’s just a terribly sad outcome. Very best wishes to you and a massive hug too! Jordan x

  15. mellieriffic April 23, 2015 at 7:18 am #

    Hi, I have been reading your blogs for two days now, and I am really feeling hopeful and inspired right now. You see, my brother is also suffering from hydrocephalus and he has no shunt yet for his upcoming operation. We’re from the Philippines and medication is quite expensive here. Been searching for help all around for eight months now. If you want to know more about this, please feel free to check this link out: https://mellieriffic.wordpress.com/2015/04/20/a-call-for-help/

  16. stephanie smith August 19, 2015 at 12:03 am #

    have had hydrocephalus since I waa baby shunted with vp shint, I have taught student bout my hydtoocephalus, as they are in college, and come to teh faciliyu I attend I have had OT and PT no trvisions in 13 years, but I have had some PT reventally

  17. mark hanson September 3, 2015 at 1:19 pm #

    Hello Jordan! How are you? Hopefully you are well? The last time we spoke you advised me on being patient.I have taken that advise and i can see light at the end of the tunnel ! My problems are far from over i know that.I have been confined to my bed for many months but have now found the will to get up and around my house.After my last adjustment of my shunt unfortunately i,m not sure now what setting i,m on but it has brought me some relief from the constant head ache that no doubt we all suffer.I will keep in touch of course and let you know how i progress with my treatment and i understand as you told me that it could be a long time even years before i get to some normality but i thank you again ! Good luck Jordan,Mark x

    • jordantheheadcase September 3, 2015 at 4:37 pm #

      Hi Mark,

      I am well, thank you. So pleased to hear there has been a little improvement for you. It does take a long time sometimes! But it sounds as though the pressure adjustment you had was in the right direction for sure, if your headaches are a little better. I think the key now is what you mentioned; your ‘will’. Having the desire to recover is really important; keep setting yourself little goals every day even if they’re as small as ‘get dressed’. Congratulate yourself at the end of each day on your achievements and don’t forget to allow yourself to have your crappy days when they come (because they do come). It really sounds as though things are moving though and I’m keeping everything crossed that it stays that way. Jordan x

  18. Hayley shubert November 11, 2015 at 2:51 am #

    Hi Jordan, I live in the USA I had my vp shunt put in June 2015 I have been having problems with the shunt tubing it migrates all over my abdomen it’s very painful I have ended up in the ER CT scans taken which shows it’s the tubing but my NS said its normal and I need to live with it , no one here in my town will have anything to do with my shunt because they don’t know anything about it my NS is 90 miles away what is your experience of the shunt tubing thank you

    • jordantheheadcase November 24, 2015 at 9:58 am #

      Hi Hayley,
      I sympathise! I had terrible troubles with shunt tubing for a couple of years before my shunt was finally revised. I ended up in hospital a couple of times with it as the pain was so bad. Although it’s a problem for neurosurgeons, as solving it involves a surgery which carries with it a risk of infection, yadda yadda yadda, it is quite insensitive of your NS to tell you to just ‘live with it’. I bet if he/she had that pain for even a few hours they’d change their mind about it!! I appreciate there are issues with distance regarding your NS but I would urge you to get a second opinion. Maybe see a new GP first and press your concerns. At the end of the day, if a tube is pressing into internal organs sufficiently to render you in agony, that’s a problem and it needs to get seen to. Don’t forget you can ALWAYS seek second or even third opinions, even if it means travelling further. I’m on my third neurosurgeon and he’s not local; my first two were but I’m so much happier with this one and have received such better treatment that the work to get a third referral, do the extra travelling and so on was worth it. It’s good that you have ‘proof’ from the hospital that it IS your shunt tubing causing the problem. And to be honest it’s not a massive deal to sort it out; it’s just repositioning the diestal tubing…it’s not as if they have to go into your brain. Maybe re-routing to your heart or lungs would help or shortening the amount that’s already in your abdomen. Don’t freak out by the mention of it going into your heart; I had mine there for the first four years and I never, ever felt it once! It’s only when it was put into my abdomen that the trouble started. Anyway, go for it, see a GP and have a chat and see what you can get done. Good luck! Jordan x

  19. Emma April 11, 2016 at 9:04 am #

    Nice post…

  20. Edward April 25, 2016 at 9:23 am #

    Thank for sharing..Nice blog

  21. Laura October 10, 2016 at 4:06 pm #

    Hi I don’t know if you can help me but I have a question, I am currently a support worker I work with challenging behaviour which can be banging head, pulling hair etc am I at risk if my head gets hit as I have a shunt in my head draining in to my stomach, please help as I really need to know as I love my job, regards Lo

    • jordantheheadcase April 9, 2017 at 1:03 pm #

      Hi Laura,
      Thank you for your post and apologies for the delay in replying. I would say that yes, be careful regarding your head! Any significant bangs (especially if on your shunt side) need to be checked out although hair-pulling will probably just hurt where it’s pulled! Good luck – I don’t think you need to leave your job…just be careful and if it looks as though you’re going to be banging your head a lot then ask for some support to prevent this. Jordan

  22. Sheri Soltz October 18, 2016 at 7:58 am #

    Thank you for your blog!! This has been the most frustrating time of my life with many questions.
    My surgeon has been kind and always tries to answer my questions and concerns. I was joking around my last visit and I said that it seemed to me that all neurosurgeons should get the same surgery as we do so they can relate to patient uncertany. He laughed politely but sort of askance at me oh well just a suggestion.
    So keep the faith Jordan. You are doing a good thing!

    • jordantheheadcase April 9, 2017 at 1:16 pm #

      Hi Sheri,

      Thanks for your kind words! Yes, it’s a strange condition to have isn’t it? I don’t think anyone who doesn’t have it can truly relate, no matter how good their intentions. But that’s okay; it’s up to us to make the best of our individual situations with the support of our medical teams and friends/families. Keep asking the questions if you have a surgeon prepared to answer…I think knowledge is power when it comes to your body. Understanding what’s going on really helps alleviate fears. All the best! Jordan

  23. tm November 19, 2016 at 11:42 pm #

    I’m a bit older than you having a shunt since I was 7 years old.
    At this time information about HC was not available and it took me a long time to understand it a little bit.
    I’m happy as it was only once neccessary to revise my shunt. But it was not far away from my end. As of today I have one of these “old fashioned” shunts with a Spitz-Holder valve. No high tech. But it works fine.

    Searching for more information now I found this website Please allow me to encourage you to proceed with all your good ideas.

    • jordantheheadcase April 9, 2017 at 1:22 pm #

      Hi there,
      Thanks for your post! Wow, you’re doing really well with only one revision! That’s great. Keep that up…you could be a record-breaker soon. All the best, Jordan

  24. Kevin April 10, 2017 at 2:24 am #

    I found out I had congenital hydrocephalus about 5 years ago. I found out after having a tonic-clonic seizure while sleeping. After many mri, ct scans, a sleep study; it was discovered that I have a arachnoid cyst. The cyst is about the size of my fist in the right posterior fossa. It was also noted that my ventricles showed sign of congenital hydrocephalus. They did a lp (which I hated) and my pressure was about twice the norm. Basically, my head was really messed up from birth and I never knew until about 37 years of age. I was told I probably had seizures my whole life and never knew. Absent seizures during the day were dismissed as staring spells.
    Anyway, my neurosurgeon tried to do a fenestration of the cyst to relieve pressure. That surgery was a failure due to the amount of csf flooding through the operating area. After that surgery, I was told that he would schedule me for a vp shunt.
    But, due to that first surgery, there was issues with my cerebellum and my balance. Basically, everytime I tried to walk, it looked like I was drunk. A couple weeks after that surgery, and still having balance issues, I woke up in the middle of the night with a massive pressure headache. I was vomiting and there was csf leaking from my incision. So, I was rushed by ambulance to the hospital. I did a mri to map my brain for surgery. Next thing you know I have a vp shunt. Other than my balance issues, I felt amazing. My head was clearer, my memory was getting better, my concentration was better, my vision was clearer. Just my balance was bad. Eventually, I got into balance therapy and aft 6 months I was much better.

    • jordantheheadcase April 10, 2017 at 7:41 pm #

      Hi Kevin,

      Thanks for your post…sounds like a rollercoaster! I’m glad the shunt worked for you and I’m so pleased you’re feeling better. I’m with you on hating LPs…I had three and after the third vowed never to have another. We all have our breaking points…that’s one of mine! Keep on doing well! Jordan

  25. Beira April 27, 2017 at 4:40 am #

    Hello Jordan, I just discovered you’re blog because my little sister had surgery for a vp shunt about a month ago . She had liquid build up in her brain, was getting horrible headaches . Well my little sister had a brain tumor removed when she was 4, her neuro surgeon that did that surgery is located in Memphis, Tennessee . So she had regular check ups with another here in Oklahoma, we’ll all that time she had liquid build up after her surgery and that Doctor thought it was normal !! This whole time !! (She’s 9 years old now) Next thing you know she kept getting this horrible headaches so we decided to get a second opinion . Well her brain wasn’t draining the liquid and already had so much buildup she recommended the vp shunt. Long story short my little sister had her surgery and was in the hospital for 2 days recovering, headaches are gone ! She’s doing much better then before . But her doctor that did this surgery was fired days later so we don’t know if we should worry 😦 . What if she wasn’t doing right procedures or something ? Another thing is my little sister gets horrible pains in her tummy like 2-3 times a week and they say it’s normal. Should we do something about that ? She’s gonna see a new neuro surgeon tomorrow , my parents are gonna drive 2 hours for her appointment . I just want what’s best for my little sister 😦 . She seems back to normal but this pains she gets are horrible . Her vp shunt is draining to her stomach so all the doctors say it’s normal . Please if you could give me some feedback and advice . Sorry for my horrible grammar and misspellings . I’ll appreciate it !

    • jordantheheadcase June 27, 2017 at 2:37 pm #

      Hi Beira,
      My apologies, a few messages from readers somehow got placed at the bottom of a very long list instead of newest being at the top (they way they are usually listed). How is your sister doing now? Is she sorted out or is she still having problems? Jordan x

  26. Jodi Sewell June 6, 2017 at 2:40 am #

    I developed hydrocephalus from brain cancer and ended up with a VP shunt. I am enjoying reading your insights and so appreciate your willingness to share your experiences. For me, I start to believe I’m just going crazy and I end up suffering alone. I need to know I’m not the only one and renewed hope to pursue continued healing and courage to embrace myself and my life as it is, shunt and all! Thanks again!

    • jordantheheadcase June 27, 2017 at 3:39 pm #

      Hi Jodi,

      Ah, that’s exactly why I started the blog! There was hardly any helpful site which truly went into detail about what it’s like to live with such an extraordinary condition. Or if I did find a site, it would simplify everything to the degree where I felt I must be making a huge fuss! Reading everyones’ experiences is also very educational to me…so we help each other in the end! Jordan x

  27. Sally June 9, 2017 at 8:22 pm #

    Hi Jordan – stumbled across your blog and it’s made very interesting reading. I had my first vp shunt fitted 2 weeks ago, although I do not have hydrocephalus, I had chronic high pressure which caused complications after spinal surgery in April. I am interested in several aspects of what you write about – can I ask what part of the country you are based in?

    Sally

    • jordantheheadcase June 27, 2017 at 2:23 pm #

      Hi Sally, thanks for your message and sorry for the delay in replying. I live in the South East of England. Whereabouts are you? Jordan x

  28. Chris June 20, 2017 at 10:38 am #

    Jordan, I’ve always admired you for the way you’ve coped and managed to lead an interesting life despite many obstacles. So after reading your home page and blog, I can only say that you’re remarkable.
    Chris (Norwich)

    • jordantheheadcase June 27, 2017 at 2:26 pm #

      Hi Chris! I didn’t expect to see you on here! Thank you for your kind words…I’m lousy at taking compliments but I appreciate what you say. I think to be honest many people would just try to press on in this situation…it’s all you can do really. Hope you’re keeping well and to see you soon! Jordan xx

  29. Debbie Neath July 26, 2017 at 8:39 pm #

    I was born with hydrocephalus and visited great or mind st hospital a lot as a child although they never operated. … I have lived a “normal” life and I am now 53… over the past few years I have developed problems walking and also with my bladder .a’s my father has lewy body disease and my sister m.’s I took myself off to the doctor and got reffered to the hospital I had mri scan and gt the results today. I have loads of fluid in my brain and I am now waiting to see a neuro surgeon … I was just looking about shunts online and came across your blog… looking foward to reading every bit of it.
    I felt so alone so thank you


    https://polldaddy.com/js/rating/rating.js

    • jordantheheadcase August 4, 2017 at 5:17 pm #

      Hi Debbie, sounds like a journey! I started this blog as I felt the same way you did when I first got diagnosed; where to go to for advice from someone who’s been through it all? Hope it helps. Jordan x

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