Long time, no post! (Whoops)

Hi everyone, 

I didn’t realise how long it had been since my last post! Such a bad blogger. Haha. Seriously though, it’s been a chaotic few months!

Most of you will have heard about my shoulder, well I FINALLY got it done! So glad it’s finally fixed but I did end up spending most of my (Aussie) summer break in a sling. 

Next up is surgery on my wrist. I just can’t stay away from those operating rooms! Lol.

Now, onto the topic that I set this blog up for. The shunt!

The latest development is that the old catheter left in when I was 15 (the one that drains from my head to abdomen) has now moved and is rubbing against my shunt. As you can imagine, this doesn’t exactly tickle! I have an appointment with a neurosurgeon in May so hopefully they pay attention. I have a feeling that that dirty 7 letter word starting with ‘S’ is going to come up again though. So at some point soonish I’ll probably be saying goodbye to a chunk of my now ridiculously long hair 😦 

Oh well, that’s the life of someone with hydro I guess!

Avoiding the hospital

Well, as the title suggests, I’m avoiding paying a visit to my local hospital.

For the past couple of weeks I’ve been getting progressively worse localised shunt pain. It’s not something I’ve ever had before, and the closest I can relate it to is the pain from a shunt tap. No idea what’s going on!

I’m fairly sure it isn’t anything too serious as I’m not ‘sick’ in the way I would be if it were a malfunctioning shunt, but I am still concerned. Has anyone else ever experienced anything like this?

I haven’t had shunt surgery for almost 3 years and I haven’t bumped the shunt or anything so it’s really puzzling me. And of course, I can’t get into a Neurosurgeon. Damn waiting lists! The only way to get it checked out would be to go to my local hospital (which doesn’t have a Neurosurgeon), and get transferred to the only hospital that does have a Neurosurgeon which is 2.5 hours away! And that hospital has a habit of sending me home if I don’t seem sick enough to get their attention. Argh! Guess I’ll just have to wait and see!

Hope you’re all well! 

x

The shoulder….

I missed a call from elective surgery bookings at the hospital last week. Whoops! I called them back straight away and left a message, but they never called me back. I know what it’s for though. It’s for the shoulder. 

So, the shoulder. 

A couple of years ago I had a grand mal seizure. It was only my second one but it is so far my worst as far as injuries go. I’ve actually only had 3 grand mal seizures (thank you meds!), but my first one and last one happened while I was sitting down, therefore the injuries were pretty minor. The usual bitten tongue and a few nasty bumps on the head after the first one courtesy of a window sill, but nothing major. 

The second seizure happened at a friends place. The same place I had my first one actually. I remember that my friend and I were getting ready to take her 3 kids to the market. I remember sitting on the couch to put my shoes on, and that’s where it all goes blank. Apparently, I put one shoe on, then went into the kitchen and just stood there staring at my friend for a bit, then I dropped. Hard. I don’t know how I got to the couch, and I don’t remember the ambulance officers getting there, btu apparently when my friends brother-in-law pulled me up off the couch he pulled me by my right arm, which is the side that I had fallen on during the seizure. No one realised it at the time but it turns out I had actually dislocated the shoulder when I fell. 

My shoulder was x-rayed at the hospital and I was told that it wasn’t, and hadn’t been, dislocated. How wrong were they! I believed the hospital but when it was still hurting a couple of weeks later I went to my GP who ordered an ultrasound and then a CT scan at the radiologists suggestion. Sure enough, not only had the shoulder been dislocated, but when my friends brother-in-law pulled me up off the couch, it had slammed back in and the ball part of the joint had a large dent and chunks missing. 

Since then my life has been a series of dislocations. I can dislocate my shoulder doing just about anything. I’ve even managed to do it in my sleep! I was put on the waiting list for surgery pretty soon after the damage was discovered, but the waiting lists here are horrible. I think I’m about to about 4 years or so now of waiting. But it seems like the wait might almost be over. 

I’m going to try to get them to hold off until after exams, as I hate missing uni and there is no way I could do uni with my dominant arm in a sling, but we’ll see how we go. Truth be told, the thought of having the surgery is terrifying! 

I’ve actually been asked what could be so terrifying about a shoulder operation after all of the shunt surgeries I’ve had. I mean, after all,  I’m used to having brain surgery! And there-in lies the answer folks. I’m used to it. Until earlier this year when I had an incisional hernia operated on (shunt related), the only surgery I had ever had was the dreaded ‘brain surgery’. I know what to expect after a shunt surgery. I know what I can and can’t do, and I know that the list of ‘can’t do’ is pretty small after shunt surgery. After the shoulder surgery I’ll have to keep my dominant arm completely still for 6 weeks. This is further complicated by the fact that I live alone. Should be an interesting journey! I guess I’ll just have to take it as it comes and find more creative ways of getting things done!

Anyway, that’s my random thoughts for the night done with. Hope everyone is doing well!

xx

I don’t ‘do’ planning!

I recently had a boyfriend (for a grand total of 2 weeks), which ended when he decided that my unwillingness to ‘plan’ anything was something that he just couldn’t live with. 

Don’t get me wrong, I am able to plan things obviously. Without being able to plan anything, there is no way I would get anything done for uni. It’s just that I don’t like to plan things. Why you ask? Well it’s all got to do with the little issue of being shunted. 

You see, when a shunt malfunctions it can be FAST! And by fast I mean you can be having a great day and BAM, you’re down with a thumper (see previous posts for the definition of thumper) and on your way to your local hospital. This is why I don’t like planning things. There is nothing worse than having to call someone to tell them that you can’t make it to dinner/drinks/whatever because your brain has decided that it just can’t be bothered. When you are a person who has a lot of these moments, it starts to sound like a bit of an excuse to the people around you. To get around this problem, I just don’t plan for anything too far into the future.

I am not totally unwilling to plan for things. I will often arrange catch-ups with people for the following weekend, or organise a trip to see my family a few weeks in advance, but these are people that understand that sometimes any plans that I might have can go out the window, often at the last minute.

Are any of my other hydro friends like this? Or if you’re friends with someone that is shunted, have you noticed how much they hate planning things? I know not all shunted people are like it, but I’ve found that people who have had many complications usually are.  

Anyway, random thoughts for the day over. I’m going to go study. Hope you’re all well!

Never say never!

When I was born my parents were told that the chances of me ever having a normal life were slim. I would never walk, talk, and I would most likely have massive mental deficits. HA!

Most of my friends will tell you that I’m stubborn. Some of them say that it’s my star-sign, some say it’s the struggles that I’ve been through, and others say that I’m just spiteful. I like to think that it’s a combination of lots of things.

I started proving the doctors wrong early. I talked early, I walked at 9 months old, and I was reading by the time I started school. Won’t do it? Wanna bet!

When I first started my Bachelor of Arts in 2011 I wondered if I could do it. My marks for the first semester were shocking (one credit, one fail) and I was only part time then! So I decided to do something about it. Most people would get some extra tutoring, or just try harder. Me? I chose to move. That’s right, I packed up everything and moved 2 hours away from almost everyone I knew, right in the middle of the first year of my degree. I transferred campuses, so I could easily continue on where I left off before the move. The change blew everyone’s mind, even mine!

Since I moved my marks have continued to go up. At the start of this year I got a letter from the university saying that my marks were in the top 15% in the Faculty of Arts, and I was being admitted to the Deans Roll for Excellence in Arts. The only admission to ANYTHING that I’d had in years was to the Neurosurgical ward, so I was pretty shocked! 

But it gets better. I couple of weeks ago I received another letter from the university. I didn’t think anything of it when I got it. I threw it on the bench and made myself a cup of coffee before I thought I had better see what they wanted. Turns out it was an invitation to join the Golden Key International Honours Society. How’s that for ‘below average intelligence’?

I am REALLY looking forward to seeing my Neurosurgeon (whenever that may be), simply because I love proving them wrong. Proving them wrong has sort of become a hobby of mine now, and it’s way more fun than most other hobbies…..

I’m not trying to stroke my own ego here or boast. What I am trying to do is make people think. If someone tells you that you can’t do something, do it! The look on their face is priceless every time!

Smashing dreams

When we’re kids, we have this idea on how things are going to work out. For me it was becoming a nurse, getting married, having kids. The usual stuff. When we’re adults we often find out that the path isn’t quite that simple. 

The dream about becoming a nurse fell apart a couple of years ago. I was in my first year of my degree when a couple of things went wrong (shunt included), which resulted in me getting such bad marks that I was excluded for the university for a year. By the time the year’s exclusion was up it was pretty clear that my shunt was not going to behave itself enough for me to move 2 hours away from a Neurosurgeon to do nursing. I adjusted to that fact, and I’m now doing a Bachelor of Arts, which I love. And I did end up moving back to being 2 hours away from a Neuro. Screw it, if the shunt crashes they can transfer me right? I might even go back to doing nursing one day.

The latest bit of the ‘dream-smashing’ isn’t so easy to brush off. 

I’ve always wanted kids. I’m the eldest of 9, I have a HUGE extended family, and most of my friends have kids. Basically, I’ve been around kids my whole life, so having them myself seemed like an obvious step in my life.

I found out a couple of years ago that there were certain risks associated with being shunted and pregnant, but there are also many cases where shunted women have had kids with no problems whatsoever, so even though it was a scary thought I wasn’t too worried. Then came the epilepsy diagnosis….

I was diagnosed with epilepsy about 4 years ago (I can’t remember exactly), and put on Sodium Valproate, which controlled the seizures but the side effects were shocking! I went back to see my neurologist who decided that since I am a woman of child-bearing age, I should be put on Lamotrigine anyway because it’s considered the ‘safest’ drug to be on should I happen to fall pregnant. All drugs have risks associated with them during pregnancy, but this was considered the best option for me. I was happy with that, the dream was still alive. For now….

Today I read a new study on the effects of anti-epileptics during pregnancy, and it turns out Lamotrigine isn’t as ‘safe’ as the neurologists once thought. There is a pretty significant chance of developmental problems in toddlers of women who were on Lamotrigine during pregnancy, not to mention the heightened risks of neural tube defects associated with any anti-epileptics. Just what someone with Hydrocephalus wants to hear! So basically, from the research I’ve done so far, the chances of me ever having a healthy pregnancy and child are very slim. 

I am struggling with this, obviously. Kids aren’t on the agenda just yet, I’m still at university and being single, I’m kinda missing the other parts I need to make babies anyway, but kids were always in my future. One day I’m going to have to decide whether it’s worth the risk, and even though that ‘one day’ won’t be any time soon, it’s still plaguing me. 

I have had 3 miscarriages in the past, so maybe that was just my body telling me it’s never gonna happen anyway. Who knows!

Sorry for the whining rant post, but I needed to get this out. Just to balance it out I’ll put another post up now that’s a bit more positive! 

They’re back…..

Nothing like some stress to bring the headaches marching back!

It’s that time of year at uni: assignment’s all due in at the same time, mid-year exam prep, and catching up on everything I’ve missed this semester due to my health. 

One assignment in particular is proving to be a nightmare! I should probably explain…

This assignment is for a class that was originally set for third year psychology students, but is in the process of being changed to a second year subject, but they haven’t done it properly. The assignment I’m currently working on uses methods that aren’t taught until a class in THIRD year, yet the second years are expected to be able to understand and use it in an assignment. It’s due in less than 2 days and I have no bloody idea what I’m doing! So frustrating!

So the headaches have come back. And with them have come the absence seizures (I’ve had 2 since I started writing this post). Thank god the Grand Mals are staying away (thanks meds). So over it! 

I think I might call the hospital on Monday and see how much longer it’s going to be before I see a neurosurgeon and neurologist. Last time I called them (about 6 months ago) they said about 3 years, so hopefully by some miracle that waiting time has dropped to, oh i dunno, a week?! Yeah right, who am I kidding….

Sorry for the disjointed rant, I needed to get it off my chest….

Follow up thumper….

I often refer to my shunt headaches as ‘thumpers’, in case you were wondering what a thumper is. 

After a major thumper (such as the blockage I had on Sunday night), I always end up with a second one. It’s never as bad as the first one, but its still annoying! I got the second one today, unfortunately right in the middle of a full day at uni, and in one of my hardest classes. I spent most of the class trying not to cry, not from the pain but from the sheer frustration. Anyone that has had a shunt headache has probably had the lack of concentration, memory problems, and basic degree of confusion that comes with them. Well I get that anyway. When you’re sitting in a class like I was today these side effects can be so frustrating! I couldn’t even leave the class to come home because I can’t get into a doctor or neurosurgeon for a medical certificate, and I’m already so far behind this semester! 

Thankfully it’s back down to my permanent dull ache.

Sorry for the rant, had to get it off my chest!

Back to hospital again….

Well I ended up spending last night in emergency at my local hospital. I had all of the ‘wonderful’ symptoms of a shunt malfunction but it turned out it was just a blockage that managed to clear itself.

On the up-side, there are now 2 more nurses that understand shunts a bit better! They had heard of hydrocephalus but never seen a shunt and had no idea how it worked, so I gave them a quick lesson!

I had an argument with the doctor because the CT scan showed that my ventricles were of normal size, which is not what mine SHOULD look like. The slit ventricle syndrome means that mine are permanently slit-like, and that’s the way my brain likes it! She wasn’t even a neuro and had not seen any of my previous scans so I thought it was a bit rude! But hey, what can I do right?

I’m home now and the headache is almost gone. So tired though!

This is me….

I’ve noticed that when it comes to living with Hydrocephalus, there is plenty of information out there, but not too many personal experiences. So this is mine….

I was born in 1988 with congenital hydrocephalus and was fitted with my first VP shunt not long after. I had a blockage at age 9 which had corrected itself by the time they operated. Other than that I was fine until the age of 15, and that’s when it all started…..

I had the same shunt for almost 16 years, so no one was really surprised when the catheter broke in my neck. It took my local hospital almost a week to discover this and operate. They replaced my standard ‘bubble and tube’ pediatric shunt with an adjustable adult one, and I’ve had trouble ever since. I have had countless revisions since (I think I’m up to about 6 but I lost count) in order to find the right shunt for me, but the time I spent with an overdraining shunt has left me with permanent Slit Ventricle Syndrome and I have also developed epilepsy with Grand Mal and absence seizures. 

For those of you who don’t know what Slit Ventricle Syndrome is, basically most of the fluid that should be around my brain is/has been drained away into my abdomen by an overworking shunt. This leaves the ventricles slit-like in shape and can (and has) cause the ventricles in the brain to collapse. It is mostly seen in children and can be corrected by changing the setting of the shunt. It is EXTREMELY rare in adults, but when it does occur in adults and is left untreated for as long as mine was, it becomes permanent. I frequently have headaches and nausea (my head is pounding as I write this), but I am still able to function.

I have been extremely lucky with my epilepsy in that medication controls my grand mal seizures completely, however I still have a lot of absence seizures because I have to wait to see a neurologist before they can be treated. At present the waiting list is 3 years long so I guess I’m in for the long haul!

I’m not writing this blog for sympathy. I am writing it so that people know what it’s really like. So many parents think that a diagnosis of hydrocephalus means that their child will not be able to have a normal life. This is not the case! I have an above average IQ and am currently studying at university full time. I am involved in several different community/university organisations. I walk, I talk, I am happy. 

I would love to hear other peoples stories about living with hydrocephalus or shunts, whether you have had good or bad experiences or just want to ask questions, please let me know!