I’M MOVING TO WWW.JORDANTHEHEADCASE.COM VERY SOON SO PLEASE CHECK THERE WHEN THIS ADDRESS CEASES TO WORK!
*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!
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. 
67 Comments
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.
Thank you very much! The positive feedback is certainly helping me keep the faith with this project so it’s very much appreciated. x
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 !
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! :~)
Simply love it, you are fantastic. Simple.
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 !
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.
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
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!
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!
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/
Thank you so much! I am honoured. And slightly embarrassed! 🙂
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
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
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.
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.
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.
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
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
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.
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!
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
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/
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
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
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
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
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
Hello Harley I Am also USA born and raised and though leaps and bounds have been made as far as neuro imaging in the last 10 years specialists are as pig headed as ever and I’ve found myself starting from scratch moving to Georgia and docs say go see your surgeon and I say I did he’s a pediatric neurosurgeon and doesn’t work on adults and the seem like they are scolding me for not having these things figured out but as far as I knew since I was 14 and now 28 I was “all better” and now I feel like I’m being treated like a child all over again treating me like im just pulling dandywalker and hydrocephalus out of my rear . Any way I feel ur pain metephorically and maybe a little literally lol
Nice post…
Thank for sharing..Nice blog
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
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
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!
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
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.
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
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.
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
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 !
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
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!
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
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
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
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)
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
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
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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
I had a shunt put in 1 year ago today. I have unbelievable pressure headache all of the time. My vision is terrible blurry and sometimes I have a hard time walking. I have been to the NS every month for the last year, he changes the setting….1.5, 2, 2.5. Those are the only settings he says he can do. Nothing helps. I have been taking Percocet for the headache which sometimes help and sometimes not. And now my liver is showing damage from the meds. He says he does not know anything about headaches, and at this point says he “does not know what to do with me.” Can you give me any advice, I can’t go on like this, this not a good quality of life. I am 67 year old female.
Hi Marilyn,
For some reason I only just saw your comment so I’m sorry this reply is so late. I’m sorry to hear you’re having an awful time of it. It must be incredibly difficult and quite scary as well. I would suggest you get a second opinion as soon as possible. You can change your NS – I’m on my third one and I’ve now been with him for 13 years…and I’m not leaving him! The first 2 were very nice but weren’t giving me the treatment I needed and I was very unwell under their care. I went to my GP and asked for a referral. You are entitled to do this and if I were you, I would at least explore it. It’s hard to advise you medically without getting the opinion of a surgeon as I don’t know your history and most importantly, I’m not a doctor! But if your pressure is that bad and he’s told you he doesn’t know what to do then I think you need to find someone who may be willing to investigate further and get some answers for you. Maybe some ICP monitoring would help reveal a clearer picture. Have you tried keeping a detailed headache diary? It’s a bit of a bore but it can help get a clearer picture of what is going on. Do you feel better at certain times of the day? Does caffeine make it worse? Does lying down help or not? All these details could point to a pattern that you may not be aware of yet. Maybe try keeping one every day for a few weeks and then taking it to your surgeon to talk it over with him. Whatever you decide, I wish you the very best of luck; keep me posted. Kind regards, Jordan x
Thank u so much for all of ur help I think what u r doing is wondrerful I don’t have a shunt . My granddaughter does since birth . I read everything I can to help me understand what is going on with her . She is twenty six and we both want to thank u . Please keep up the good work.
Dear Jordan, as a mother of 3 with my youngest receiving his 1st IVP shunt age 12 at the time. And you absolutely touched our family to the core with your article! 100% of what you wrote regarding your journey with the odd/unsettling different sensations was spot on! I shared your article with my child which I feel helped in his anxiety regarding dealing with the random unwanted and sometimes scary sensations..We love your humor and choice of words! Which definitely added laughs instead of panics attacks Don’t ever change what You are doing because You are changing lives with your personality , gut’s to share your ups and downs .You absolutely touched our family . we thank You !
Hi there,
Thank you for your kind comments. I’m glad the articles have helped a little; as long as they are, then I’m happy with that. I’m going to start doing some video blogs (‘vlogs’ I think the cool kids call them!) soon and I’ll put the links up on here so you can watch those too; they’re just going to address the main issues that so many people ask me about on here. Tell your son he’s doing a great job and that it’s okay to feel a bit scared sometimes. Nothing wrong with that! I do it too. But I also try and see the funny side of things if I can (like how ridiculous I look when I’m having surgeries with half my hair shaved off and bandages making my head look like a boiled egg) to even things up. So a bit of both I think is fine!
Best wishes to you all, Jordan x
I had a shunt implanted September 1, 2017. I’ve recovered well with no complications. The only worrisome aspect is pain on either side of my head when I bend over. I was wondering if that is normal or not. I’ve bugged my neurosurgeon’s nurse so much, I thought I’d ask someone who actually has a shunt about this.
Hi Stephanie,
Hmm, I’ve had pain in my head when I bend over if the pressure has been a bit too high but it’s usually been over my forehead and the top of my head. Is your shunt programmable? And do you also get pain when lying down? If so it may be worth trying a slightly lower setting…but then again you may be pressure-sensitive like me and feel things which increase pressure (like bending over/sneezing) more than others might. Try and speak to your ns if you get a chance…it doesn’t sound sinister but of course it’s not nice and for your peace of mind getting an answer from him/her would be helpful. Not sure that’s very helpful really! Hope you get to the bottom of it. Jordan
Thank you! Yes, the valve is programmable. It’s at the lowest setting right now. I’m very sensitive to weather changes, coughing, and sneezing. And I cannot lie flat. I see my ns soon so I’ll ask about it. He may adjust the valve a little then, too.
Hello I contantly find myself coming back to your blog to reaffirm I’m not going crazy ( though docs make it seem like i am) Iam going to be 28 in February and till about 3 years ago I was doing quite well I haven’t had anyone poke at my brain for almost 10 years. I have 4 shunts 1 non funtioning because it’s too rooted in my brain to remove. In the lAst few years probly since you rote this blog I’ve been struggling to maintain normal living but failing terribly and it seems many ppl around me have come to accept normal me and have forgotten the fight I put in just to graduate. And now it feels different than anything befor my vision comes and goes my body is ridged and my occipital lobe and everything surrounding it feels like it’s being pulld by the shunt tubes down my kneck even with my adderall I am sluggish and without it I’m useless . I could go on but basically I have ANOTHER neurosurgeon appt on Monday Jan 22 2017 and he has already shown signs of writing me off as he told me I need to see neurologist but I have who is the one who refered me to surgeon but also I have had many scans and visits to ER and they tell me nothing’s wrong give tylonol benedryl and anti nausea.or so I’ve recently heard called the “migrane cocktail ” but weather they believe me or not I hate pain meds and I don’t want them sure it makes thibgs better but doesn’t solve anything and being dependent on caffeine and ADHD meds just to get out of bed each day is bad enough without throwing more dopamine antagonistic drugs is just bleh.the fentynal and morphine depending on what hosputal your at . Don’t last long enough to justify the downfalls. Again I digress but essentially I’m feeling quite lost any thoughts?
Hi Dana,
Wow, that sounds like a huge amount to be going through! I’m so sorry it’s a struggle for you. To be honest I wouldn’t like to comment on your medical side of things as it sounds like you have a complicated situation, with 3 shunts and another non-functioning one and I’m not a doctor. I have permanent headaches and have had for 18 years; I don’t expect them to go away now, ever. And that’s not being negative but realistic. I’m not saying that your symptoms won’t change – they probably will to a degree – but the important thing is to find a surgeon/team that you’re happy with. Mr Watkins is my third surgeon; the other two were very nice and did okay for the first 4 years of my diagnosis but then things started to get very complicated with me so I sought another opinion and was sent to London. That’s a much longer journey for me but it’s worth it. So sometimes you may find that you need to get a second opinion but for now I’d say see how it goes with the appointments and meetings you have coming up with your surgeon and team and take it from there. Maybe ICP monitoring might be an option, as scans and x-rays don’t always give a full picture of what’s going on. Ask lots of questions with your team (write them down and take them with you so you don’t miss anything) and try and get some answers so you don’t feel so lost. And if after a time you still feel like you’re being brushed off or that you’re not getting anywhere at all, go to your GP and ask for help getting a second opinion. I wouldn’t do that yet though..see what they say first. Best of luck. Jordan x
When I originally commented I seem to have clicked the -Notify me when new comments are added- checkbox and from now on every time a comment is added I get four emails with the same comment. Is there a way you can remove me from that service? Thanks a lot!
Hi, I can’t actually change that setting…I think you would have to uncheck whatever box you checked in the first place! Sorry. 🙁
Hi, I’ve had hydrocephalus since I was born but it wasn’t detected and got worse over time and now I have a Vp Shunt. Since my surgery in 2016 I still have pains where my shunt it placed. It drains from my head to my stomach. It feels like sharp pains in my stomach and I’m told nothing can really be done. I want to work and would like to know if you have any recommendations for people with hydrocephalus that would like to work from home to better manage pain.
I am a 75 year od female, I had a couple of bad falls in 2017, after several MRI’s I was told I have water on the brain, and suggested I have a shunt. I have waited almost 7 months for something to happen, now I just found out they will see me at Shands Hospital the 17th of July for a conceltation. well I am having terrible headaches, no control over urine or bowel activity, unsteady walking, trouble sleeping, no appitite among other things. I need help, I’ll go anywere. I have been mostly bedridden since Nov 2017. Any suggestions on what I should do? I can’t live like this much longer. PJC
Hi PJ,
Sorry for the very late reply. A lot’s been going on and I am very behind with this blog. How did your consultation go? Have you decided on a shunt or a treatment plan? Jordan x
Hi, I was diagnosed back in 2000, but when I went to see the surgeon he said that my body created it’s own shunt, so I don’t have one. But from what I have read and researched I have the same type of symptoms as someone that has been shunted. I can tell when the weather is changing, sometimes I can hear a odd noise in my left hear (where my created shunt is), I get severe headaches when it gets too hot, and I have issues controlling my body temperature in the heat. I am looking for someone to talk to that understands where I am coming from, since the doctors don’t.
John
Hi John,
That sounds very confusing to me; no wonder you want to talk to someone else! Obviously I am not a surgeon so I don’t understand how you would be diagnosed with hydrocephalus if your body had created a ‘shunt’ effective enough to drain enough fluid. If that had happened, you wouldn’t have a build-up of fluid and wouldn’t have hydrocephalus surely?! My advice to you would be to get a second opinion. You are entitled to do that. I don’t know where you live and it may not be straight-forward but it is very possible to do. I got a referral years ago and never looked back. If you go to your GP and express your concerns, he/she can do it for you. Or if you can afford to go private, you can approach another surgeon yourself. Brain scans don’t always give the full picture of what’s going on; pressures can do all sorts of stuff within the brain and they won’t necessarily translate on a scan (I’ve had symptoms of high pressure and in fact was having very low pressures when ICP monitoring was done!). I’m sorry I can’t really offer you any further advice than that but it sounds too complex for me to comment on really. But if you’re not happy with the treatment you’re receiving, you can ask to see someone else and then based on what they say, make an informed decision about where to go from there. Good luck. Jordan x
Hi Jordan
I just wanted to say thx for keeping up the blog. I’m 33 year old and got diagnosed with HC last week. Got a surgery right away and now have a progav 2.0 shunt. They’re still trying to find the right level for me so currently still in a hospital. And it already got blocked once so I actually had 2 surgeries in 1 week. I have quite a few black spots in my memory always around the time I have been feeling bad apparently. But I don’t remember anything afterwards. So sometimes it’s scary for me to fall asleep 🙁
I got the HC following a spinal anesthesia for a C-section. I had no clue something like that was even possible 🙁 I couldn’t enjoy my baby for almost 3 months now as I was feeling very sick (throwing up and headaches I didn’t remember).
Now, after the surgeries, I feel more or less fine. But mainly when I’m laying down. I can’t stand for too long. And after the 2nd surgery, I have issues with my ear, it’s like echoing or something, and can hear water in my head mainly at night when I switch positions. I’m so scared bcs of my ear to have another MRI scan as the thing can be so loud.
I really hope that they find the right pressure level for me soon so I can try and restart my life.
That’s from me. Wanted to share my story and thank you for your work on the blog. Very helpful especially because you seem so positive about your situation and try to make the best of it.