It’s really quite scary. I am still clawing on to Christmas. I know, I know…when it comes to Christmas, I am officially sad. I still have chocolate tree decorations saved and a couple of Christmas crackers and my 3D animated Christmas screensaver on my laptop and you know what? I DON’T CARE!! All my friends and family know how border-line obsessive I get over the festive period (in an understated way though; I don’t have flashing neon reindeer on my roof or anything like that) and by now accept that it’s just me. DEAL WITH IT. And no, I’m not sat here typing this whilst wearing my magic transform-every-fairy-light-into-an-image-of-a-reindeer glasses (she lied).
Over Christmas and New Year I received lots of emails from readers of this blog asking all sorts of questions. I have tried to answer as many as possible but I know I’m behind so I thought that for February I’d put a shout-out to readers old, new and curious to ask me anything you like and I’ll answer all and sundry at the end of this month. You can ask whatever you blooming well like, shunt-related or not. I have a few as yet unanswered emails which I’m thinking of including in this end-of-the-month post as they’re rather interesting (fear not, your anonymity will be one hundred percent guaranteed; I’d never publish your names on one of my posts without your prior permission). So if you’ve been reading this blog and wondered ‘does she ever actually go out?’, ‘does she ever just want to rip her shunt into bits, the way I do sometimes’, or whatever else springs to mind, feel free to now go ahead and ask. And I’ll (hopefully) answer ’em all. If any questions overlap, I may need to pick one from that topic and answer that, but all topics will be addressed. So you lot get thinking and I’ll get back to….trying to get over Christmas.
Going in for my first…..and hopefully only shunt (Ha!?) on the 7th Feb. Your blog has fascinated me, gripped me and made me smile since I discovered it a couple of months ago.
Keep it up girl, the good and the bad. You are appreciated.
Rod, baldy with recently chewed nails.
Hi Rod, apologies for the huge delay in replying to you. How did the surgery go? Are you feeling okay? Glad you like the blog: I’m about to do some posts as I’m waaaaay behind! All the best to you. Jordan x
Hi young lady.
Op went fine, have a bumpy back of head and neat abdominal scar but all good. Back at work after about a month. Only downside is no driving licence for 6 months. A small price indeed!
Glad to hear it Rod! Hope things are still improving for you. X
Not sure if you are still keeping this blog going but I thought I would say hello. My name is Marty and at the age of 47 I developed Hydro on top of many other spinal issues. This happened after what I only can describe as my neck exploding into my head one day. I’ve been shunted and continue to have problems. If you don’t mind I would love to have someone to chat with who understands what it is like to be a head case like myself. Either way you are very brave to share your story with everyone and I wish you the best.
Just coming by to say hi 🙂 it’s been a while since I’ve been here! The last year and a half has been hell for me (not my health, but my dad lost his battle with Cancer in October) and I’ve noticed the increase in my headaches (trying to figure out if its stress, weather (I’ve been writing the weather down since Jan. 23 and it seems like cloudy days trigger headaches, so far) or my shunt. Can’t remember if I’ve ever asked this but have you ever noticed a throbbing pain on the side of your head that your shunts on near your temple/near your ear? I’ve had them a few times and was wondering if it was normal lol. Hope you have a fantastic 2015 🙂
I covered a question like yours in the post…check it out and I hope it helps. Jordan x
Hi Jordan. Never posted to a blog before… 51 yo male, diagnosed with iih four years ago. 8 operations on (1 x revision, 2 x icp monitors, 1 x infection, removal & replacement and 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, now dizzy and terrible 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?
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