I hadn’t intended to vanish off the face of the Earth, but life happened. Job changes, a long-running illness and sadly the loss of a close family member in January kept me busy in ways I hadn’t anticipated. Grief is a strange and unwelcome presence, I’m discovering. It’s still early days so things still feel very bumpy but I’ve missed writing the blog and have only just responded to the many, many questions you’ve been asking so it’s definitely time to get back on it!
Still alive…and still kicking!
So in terms of health, my shunt is still behaving itself which is fantastic. The fact that in every other way my life has felt a bit all over the place but my shunt hasn’t really done anything other than keep me going is testament to what an amazing little piece of equipment it actually is. I came down with ‘flu (proper, knocks-you-sideways ‘flu) after forgetting to get my ‘flu vaccination last year. Rapped knuckles for that one…having ‘flu at any time is horrible but with hydrocephalus it is officially ten times worse (I can safely say that having had ‘flu both before and after hydrocephalus!). It ended up turning into a bad chest infection which ended up with x-rays at the hospital but now it’s gone and I’m feeling back to my ‘normal’ self. ‘Normal’ will always be written in inverted commas when applying the term to myself; I don’t think what I feel day to day with hydrocephalus is ‘normal’ in relation to the rest of the population but I’m used to it…so it is normal for me.
One of the very positive things that has happened is that I’ve started rehearsing with my band again. I have sung in many bands over the years (being a singing teacher and all that) but my favourite band, the country and Americana-based one called Family Nash, split when we just became too busy with our schedules.
Terry (guitarist) and Jo (or Banjo Jo as we call her!) at our first rehearsal for years. We eat apples during our breaks. We’re not very rock and roll.
I was in and out of hospital an awful lot at the time so couldn’t really be relied upon too much when it came to gigging…which is a not very helpful when you’re the lead singer. Anyway, Terry, Jo and I decided it had been long enough and gathered at mine the other week to see how many songs we could remember. Quite a lot of them as it turned out! We chugged out some tunes by the Dixie Chicks, Dolly Parton etc. and had a good catch-up in the process. We aren’t planning to gig soon but just playing and singing the old tunes (and some new ones) is enough for us at the moment. If I can work out a way to post up a video or tune on here, you can have a listen for yourself!
In terms of the work with the shunts…well that’s been keeping me busy too so I’ll cover everything regarding that in the next post!
Keep sending in your questions and I’ll keep doing my best to answer them. I’m thinking of starting a forum on here (or elsewhere if it’s not possible to add one to this site) so you can all talk to each other as well as me. What do you think?
13 Comments
Hi Jordan. Welcome back and thanks for the blog, I’ve found it really helpful… I have never posted to a blog before, but there’s a first time for everything. I’m a 51 year old man, diagnosed with iih four years ago. 8 operations on (1 x revision, 2 x icp monitors, 1 x infection, removal & replacement, repositioning of the distal end of the catheter last December and eventually, in Jan this year converted to a va shunt) had stabbing pain where my shunt is and tightness along track of catheter, but last week started with a ‘gurgling’ sound (never happened before), now dizzy and really intense pain in my head, feels like my skull is too small, not constantly, only when I bend or lie down. I was made to feel like a fool by a neuro intern when I believed I had an infection (I was proven right eventually), now have zero confidence. Not like me, but after four years, I don’t remember what ‘me’ is any more. Hate wasting people’s time, just unsure what to do. Any advice from anyone would be gratefully received.
Hi Alex,
Did you see my reply to your post about this? I’ll see if I can find it if not. Jordan x
Hi Jordan. Can’t see your response, would you be kind enough to email me? Sorry to be high maintenance! Ta, Alex X
Hi Alex,
I had a look but I couldn’t find how to email you…no email was attached to your name. Here’s what I’d said before:
‘Hi Alex,
Thanks for your post…sorry to hear you’re not feeling great. I think that somewhere along the line we all have our experiences of medical staff who may not be exactly as we’d hoped! But try to not let those episodes shake your confidence too much. Always remember; this is YOUR body and you have a right to ask questions if you feel something is up. It sounds to me as though your pressure is a bit too high as bending over and lying down can increase it further so if it’s generally too high to start with, those movements are probably only going to make things worse. Do you have access to your neurosurgeon? If you can email him/her and express your concerns at least your team will be aware of what’s going on for you. Staying quiet, I’ve found over the years, doesn’t usually help matters!
Always bear in mind that you are also entitled to a second opinion. I changed my surgeon years ago after not feeling confident with my first two…best move I ever made. You don’t have to stick with team you have right now but I would suggest meeting with them and having a good chat (and hopefully a check-up). Tell them about the experience with the intern; it’s important that they know how this has affected you. Keeping open lines of communication between you and your surgeon is crucial for good treatment. They’re there to support you at the end of the day so should listen to your concerns. And if they absolutely don’t, go to your GP for a referral. Best of luck. Jordan’
Hi Jordan
Thank you for taking the time to respond, it is very kind of you and really appreciated. I am seeing my neurosurgeon tomorrow. Thanks again for the advice. Hope you are well, Alex
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You’re welcome, Alex. Good luck for tomorrow! Keep me posted. Jordan
Good! You write really well, I want to read it even though I don’t have hydrocephalus. Just had a really nice day with Elaine and Kim and Elaine had a few tears when I gave her the vase, some photos and copies of the eulogy and prayer. I also found a recipe in nan’s handwriting entitled Mary’s German Apple Cake so baked it and we had it with tea before they went home. Speak tomorrow xxxx
Welcome back Jordon
You helped me through my last shunt replacement , now nearly 3 years with this shunt and it is still functioning .’touch wood ‘ OK.
With previous shunts I had no problems when I got a cold .But with this one ,I have major problems if I catch a cold , is this the same for everyone ?
Thanks
Janet Thomas x
Hi Janet, blimey I only just found your post so I’m sorry for being months late. I’m glad to hear you’re not having any more issues! Regarding colds, I hate them. I think they make everything a lot worse, pressure-wise. Once I had a shunt malfunction after having three chest infections back-to-back. The trick is to drink shedloads of fluids to keep the CSF fluid from getting thicker and sticky (that’s how my shunt malfunctioned; the fluid itself clogged up the mechanisms!). It’s very rare but now I drink for England if I get ill. And rest up of course! Jordan x
I had a variable pressure VP shunt installed about 2 months ago. Thus far I have yet to see any improvement in my symptoms with gait and balance being my biggest challenge. Thus far my Neurosurgeon has been very reluctant to make even a modest change in my pressure setting. It’s currently set at 14. I realize ovedrainage can be a real problem/crisis. But can anyone suggest how I should proceed?
Hi Ed,
How are things for you now? Have you had any pressure adjustments done? Any improvements to how you were feeling? Jordan x
Hi my name is O’Na Hicks. I have a hydrocephalus for 21 years. After I turned 19 years old. I started getting headaches over and over for stressing and being frustrated or maybe the fluid in my brain. One day I went to the hospital and the doctor told me that I was stress about my grades. My sister laugh at me and thought it was funny. I started having suicidal thoughts because I just don’t feel like living anymore and it hurt so much to have deal with so much pain. My mom will tell me that there’s nothing wrong with me and for the rest of my family will ignore me. But my brother told our mom that I need go to the hospital. And my boyfriend will always tell me to take some medicine and go to sleep. But I always tell him no. Because I feel like it’s not going to help.?
I feel like my shunt is taking over my life and I can’t do anything about it. I hate this condition so much.
Hi O’Na. Goodness, that sounds awful. I’m so sorry you’re having to go through all this. How are you doing now? Are things still really bad? As you have a shunt and you’re having prolonged and bad headaches, I would strongly advise you to keep getting medical opinions until you find someone willing to take you seriously and have a check on what’s going on in with your shunt. You can get second and third opinions if necessary. If they check and the shunt is working fine then you can address other possible causes, but if you have a shunt and your life is being ruined by the headaches in this way, someone should be checking it out. Listen to yourself; if you find you’re not getting much support from your partner then maybe go to your brother who seems to realise there could be an issue here? I think your brother is right; you need to go to a hospital or at least a doctor and just get a good check-up in the first instance. Another thing you can do is get your eyes checked properly at an opticians. If there is pressure behind the eyes (which would indicate raised pressure in the brain), it’ll show on the eye test. I’ve done this once before and they sent me straight to the hospital with a note for the doctor! Best of luck. Jordan