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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 fourteen 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!

Last year I started this blog to cover my 39th year and my equivalent of a ‘Bucket List’ (instead of a list of things I wanted to do before I die, it was a list of things I wanted to do before I turned forty.  It was an ‘F’-List, the ‘F’ for forty replacing the ‘B’ for bucket!).  One item on this list, Number Six, was the most important to me; to start a project encouraging hospitals and neurosurgeons to donate unused or recently expired shunts (the life-saving devices used to treat hydrocephalus – I am on my third) to developing countries where shunts are hugely expensive or simply not readily available.  This project is a MAHOOSIVE amount of work and it quickly took over my F-List; some items I was able to tick off before I turned forty in October; other items I haven’t ticked off and will have to wait.  I have decided to focus this blog for now on the donation project and to the subject of living with hydrocephalus (giving the truth, not the textbook version so often told to patients by well-meaning doctors).  If you have any questions, please ask.  If you have any spare shunts, please donate.

You can read about what it’s really like living with hydrocephalus  here..

☆ You can read about my Shunt Donation Project (no. 6 on the List) here.

The blog of George Samandouras inspired me to start mine; read his here; it’s fantastic.

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

30 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

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