I’m Back…So Sorry For The Loooooong Absence!

9 Apr
Yes I am still around…so sorry for the huge gap since my last post!

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!

Yes that is my cocktail bar.  I rarely drink and I have a cocktail bar.  I just love playing hostess!

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 Jo rehersal

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?

An intro to hydrocephalus. Complete with ideas for a Cream Cracker Challenge and a few pics.

1 Apr

People have been telling me I should write a book/start a blog/document my life in some way for many years now.  I haven’t done so for two reasons; a) I feel embarrassed about being in the spotlight in any situation – self-promotion does not come naturally – and b) the very thing that they have been wanting me to write about has been the very thing that has prevented me from doing so.
I didn’t actually think anyone would be that interested, to be honest. I also prefer to just get on with things when I can and not have to keep dredging up any difficult times.  The ‘thing’ that’s prevented me up till now from doing this and that everyone finds so interesting is hydrocephalus.  Pronounced ‘hydro-KEF-alus’.  Try saying that with a mouthful of cream crackers without spitting any crumbs out; it’s great fun.  The ‘KEF’ bit is in caps because people tend to emphasise that part of the word.

Cream crackers + certain words = juvenile fun

Cream crackers + certain words = juvenile fun

I think it can be pronounced ‘hydro-SEF-alus’ (I gather many people in the States pronounce it as such) but personally I prefer the ‘K’; it’s a bit harsher, which to my mind fits the condition.  There is nothing soft, gentle or fuzzy-edged about hydroKEFalus (I’ll start spelling it properly from now on.  I don’t think it’s a good idea to intentionally misspell words for a long time).  It’s a challenging condition to live with, yet many people don’t really know what it involves.  So I’ll describe it below.  I’ll keep it short and simple as other peoples’ medical stuff can get a bit boring, let’s face it.

THE BORING MEDICAL FACTS (SKIP IF YOUR EYES START CLOSING INVOLUNTARILY)
  • Hydrocephalus is the result of a brain not being able to drain away the essential fluid it produces; the fluid gets trapped inside the brain and pressure starts to build as more and more fluid is produced and trapped inside with nowhere to go.
  • This fluid is called CSF ; for a really fun cream-cracker-challenge, try its proper name; cerebrospinal fluid.  It’s full of nourishing good stuff, drains away brain waste (no, I didn’t know such a thing existed either)
    This is me lil' lifesaver.  The bottom end actually runs all the way down into the abdomen.  And no, that's not my head.

    This is me lil’ lifesaver. The bottom end actually runs all the way down into the abdomen. And no, that’s not my head.

    and cushions the brain from bangs and knocks.  The old adage ‘too much of a good thing’ applies; CSF is a good thing to have in your brain but too much of it can effectively kill you within hours.

  • Symptoms of rising pressure in the brain include worsening headache, nausea, vomiting, double vision and drowsiness…which eventually can lead to coma and death.  Nice.

And that’s about it.  So as I cannot drain this CSF myself, I have something called a shunt implanted in my brain to do it for me.  A shunt is a bit like a glorified drinking straw; it’s a long, bendy tube and sticks straight into the bit of the brain (the ventricles) where the excess fluid is building up.  There’s a valve that can be adjusted depending on how much fluid you want to let out (it lies under the skin on my head – sort of behind my ear) and then it tunnels down my body (I can track it down to just above my right boob and then it disappears) and ends up in my abdomen (peritoneal cavity to be precise), where all the CSF that wasn’t needed anyway is absorbed and drained away.

So that’s hydrocephalus.  I’ve had it for thirteen years now and in that time I’ve had nineteen surgeries for it.  The majority of the surgeries have been to fix/replace the shunt when it’s developed a fault.  Three have been to deal with two shunt infections. The first time, the infection went straight to my brain. The second, it travelled down the shunt into my abdomen.  A shunts fantastic ability to transport unwanted CSF down the body is a bit of a downfall when it gets infected; its design also ensures that it spreads infection like billy-o.

Me with a bolt in my head. It’s an ICP bolt (IntraCranial Pressure) and it measures just that.  It’s a winning look.  I think this could take off.

On average I’ve had a brain surgery every 7 months; when you consider that it takes 2 months-ish to recover from a brain surgery, it doesn’t leave much time to get on with stuff before you start developing symptoms that will require the next surgery.  You also never exactly look your best.  Bad Hair Days become an everyday occurrence.  As does spending more time in your pyjamas than out.  The last eighteen months, however, I’ve been surgery-free; an all-time record.  I am using this rare opportunity to complete my ‘F-List’ – this is explained a little more on the ‘Home‘ page and ‘The 39th Year (And My ‘F-List’)’ post.  To say I feel a bit rushed to get everything I want to get done, done, might be a bit of an understatement.  Every day, I have a sense of my body and mind crying out ‘quiiiiiiiiiick!  Get a move on, before it all starts up again!’.  Not that I think it is all going to start up again just yet.  It’s just that I have been used to grabbing opportunities to get things done in the past on the odd days I feel well, so to have day after day after day of feeling reasonably alright is something I’ve struggled to get used to.  Everyday routine, for me, is a complete novelty.  I work!  Every week!  I can socialise on my good days if I want to!  I haven’t had to cancel last minute on anyone for months!  MY HAIR HAS GROWN TO MY SHOULDERS!!!!!!!!!!  (Can you see which part of my new life is the most important to me?  I have my priorities well and truly sorted).
So….why do the blog?  Here are my Very Important Reasons:

VERY IMPORTANT REASONS FOR DOING THIS BLOG

  1. I have a list of things to do on my F-List which I think will benefit from me blogging about as I go about trying to achieve them.  If I think people are reading about my progress (or maybe, my lack of it), I’ll feel propelled to get the heck on with it.
  2. It may help people who also have hydrocephalus to read the truth about what it involves (waaaaaay too many ‘textbook’ description out there online!) and to also show them that it doesn’t have to completely dominate one’s life.
  3. I need to practice writing stuff if I’m going to get any darn thing published (which is one of my ‘F-List’ goals).
  4. I’m a sheep.  Everyone seems to be blogging so I tend to just want to follow.

So now I had better get on with it.  See, this is why I’m doing this.  What I really want to do now is to go and make some cupcakes which would be a bad idea as a) I wouldn’t get any more blogging done today and b) I’d eat them.  Getting good at making cupcakes is another of the items on my F-List.  Here are some I made for Mothers Day:

I was quite pleased with these as they were my first batch and edible.

I was quite pleased with these as they were my first batch and edible.

.SS
SSSOSSSSS Sod it, I need to make some.  Almond cakes with salted caramel frosting, here we come.

For more posts about what living with hydrocephalus is like, click here.

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Our Charity Starts At Home…But It Doesn’t End There

9 May

After a few years of snatching spare bits of time to get what started as the ‘shunt donation project’ off the ground, I feel that it’s finally getting to where I wanted it to be.

 The idea started back in 2011 when I was badly overdraining and waiting for a bed at the National Hospital; I felt so terrible that I was online searching for…what?  Something.  Some hint that I wasn’t the only one going through this, I suppose.  I used to do that rather a lot when I felt physically awful and emotionally drained from feeling permanently ill and preparing to go through yet ANOTHER brain surgery.  It never really helped; all I’d uncover were horror stories of brain-surgeries-gone-wrong.  (If you find yourself in the same position at any time, may I suggest going to Shine if you’re in the UK or the Hydrocephalus Association if you’re outside of the UK?). Both offer excellent advice, reassurance and have community links where you can chat to other people in the same boat as you….AVOID THE HORROR STORIES AT ALL COSTS.

  Anyway,  (a quick recap for new readers), I stumbled across a film from Vietnam highlighting the plight of children and babies with untreated hydrocephalus and mentioning that shunts were sometimes donated from hospitals to help with the treatment.  To cut a very long story short, I started to gather what information I could on the situation and started asking hospitals if they had any spare shunts. This took a good year as I wasn’t actually well enough to do much at all (I was having brain surgery on average once every 6 months at this time…this went on from 2000 to 2013).  When I finally had some breathing space in 2014 I teamed up with a consultant neurosurgeon at the National Hospital in London (Lewis Thorne) and we co-founded Action For Hydrocephalus, which was finally registered as a charity at the end of 2016.

afhethiopianpatient2

Goal achieved; one of the children after a successful shunt surgery using our donated items (Ethiopia, April 2017).

We are now three, as we were joined by another neurosurgeon from Great Ormond Street Children’s Hospital (Greg James).  So far we have sent donated shunts and neurosurgical equipment to Uganda, Kenya, Vietnam and Ethiopia.

In 2016 we teamed up with Reach Another Foundation, who work in Ethiopia.  We’d donated shunts to them before but Dick Koning (Founder) thought there were more possibilities by working together.  We’ve met a few times and are now partners.  Dick and his team regularly operate on babies and children with hydrocephalus and spina bifida as well as training neurosurgeons.  We are in discussions with regard to a possible training exchange with the UK (so we’d fly surgeons out there to train Ethiopian students as well as having them over to the UK to observe shunt surgeries here).  We also help equip their expeditions to Ethiopia as there are no neurosurgical instruments available out there; without equipment and shunts no surgeries are actually going to be possible.
Running a charity from your living room (the meetings are held in London but all the other work is done at my house) can be a messy business.  More often than not my little home has shunt kits, boxes of neurosurgical items and a lot of paperwork lying around .

shuntkitsinlivingroom

Shunt kits can be rather big.  Cats can be rather nosy.

Keeping my inquisitive cat out of the boxes and packaging is one task.  Not tripping over them is another.
One downside of my hydrocephalus is that I’m so pressure-sensitive I can’t fly on planes any more.  So I can’t actually get over to Ethiopia myself (yes I know I could go overland but it would also render me bankrupt).  So getting photos and feedback from the team who’ve received and used the donations is nothing short of wonderful; to see the children after their surgeries, knowing that a shunt is now safely inside each of their heads and that now the hideous feelings of high pressure will start to be reduced, literally lifts a weight off my shoulders.  I know first-hand how high pressure in the brain feels.  To have it without the knowledge that it will soon be treated is unthinkable to me.  Being ill in hospital isn’t nice but it could be so much worse; I always count myself very lucky to have been born in the UK with access to hospitals, surgeons and healthcare – none of which I have to pay for directly.  Very. Lucky.  The most recent expedition to Ethiopia was just last month in April.  Dick had emailed me a few weeks prior with a list of equipment which was urgently needed and asked if I could help.  This is when holding down two jobs and trying to get charity work done becomes a little tight.  Luckily this time, as before, I had two very understanding donors who acted immediately.

photo-collage

One donation, two donation, three donation, four!

  The companies who donate the actual items we send out are absolutely crucial.  Without them, the money would have to be raised to buy the equipment which would slow things down to the point of being dangerous for the children who need urgent surgeries and would also at times make some surgeries impossible if the money can’t be raised.

afhethiopianpatient1

One of the tiny patients: April 2017 expedition

I have been very lucky with the donors I have worked with; all of them who have given their equipment in abundance and completely free of charge (including shipping; I always say I’ll pay for that and they never let me) do so with goodwill and a real desire to help.  In the past we have had donations from:

Sophysa
Codman
Medtronic
Single Use Surgical
And various hospitals!

This time around we were lucky enough to add a new and very generous donor to our growing list.  We were already being helped on this occasion by Single Use Surgical (who had helped equip the trip made in 2016), but also had Surgical Holdings on board for this trip.   Surgical Holdings are a family-run company located in Essex and quickly sent a whole load of equipment from our list.

afhdonationreceived1

Dr Esayas receiving some of the donations from Surgical Holdings & Single Use Surgical in Gondar (April 2017)

Approaching a new donor is always a little nerve-wracking for me.  After all, I’m literally asking a company if I can have some of their products for free…I know it’s for a charity but I still get a little knot in my stomach when I ask.  And I really shouldn’t because I have never received a negative or rude response.  If the company are unable to help they’re always profusely apologetic and if they can help, they are so enthusiastic and supportive it makes me feel ashamed of being worried about it.  Because generally, people do want to help, especially when they know more about what we’re doing.

 This time I was in touch with Daniel Coole, Managing Director, who replied quickly to my email with ‘absolutely; if we have these items we’ll help.  How many?’.  It was as simple as that.  What a kind man. Soon after, a large box arrived at my house with everything the team in Ethiopia needed.  Unfortunately, actually getting the goods to Ethiopia can be a little tricky; we’re not dealing with Royal Mail and British customs here!

afhdonationreceived2

Inspecting the items with smiles.

Paperwork requirements keep changing, items get confiscated at customs for various reasons and never returned…it’s a bit of a gamble.  And also sometimes takes a bit of to-ing and fro-ing with the donors to ensure we have the right paperwork etc (which keeps changing).  It’s not the fault of the donors and can be a bit time-consuming for them which frustrates me no end; I want it to be as seamless as possible for them.  However now Dick has established a new system with customs and Ethiopian Airlines so we’re hopeful that from now on the whole donation procedure will be nearly effortless for the donors.
So generally, I track down, beg for and receive the items at my home, take them personally to a volunteer flying out to join the Reach Another Team in Ethiopia and she carries them with her hand luggage.  Given the vast amount I received this time around from two donors (Surgical Holdings as already mentioned and also Single Use Surgical who have donated before), I felt a bit guilty about handing them over to her; talk about heavy!!

afhethiopianpatient3

Another of the babies ready for surgery.

 I wouldn’t fancy lugging that load to Ethiopia on top of all my normal luggage.  I do seem to spend rather a lot of time feeling a bit guilty doing this work; guilty for asking for free stuff, guilty for passing it on…I really must get over that! Ciara (the lovely volunteer) didn’t bat an eyelid.  She was too busy being excited about the donations.   And so she should have been…it was generosity on a huge scale.
Yesterday I received the first photos from the team in Ethiopia which I have shared with you here.  They show one of the surgeons unpacking the items and also some of the little patients who they were used on.  As we had so much equipment, the donations were sent to three different centres which was amazing; without them, these surgeries couldn’t have been performed and the babies couldn’t have been saved.  So thank you Daniel Coole and everyone at Surgical Holdings, Single Use Surgical and all the other donors who have helped us in the past (and who can hopefully help us in the future).  Because without you, there would be a whole lot more suffering going on.

A Rather Overdue Update

16 Jun

Where does the time go?  Seriously, that is a genuine question.  Anyone who has an answer, please let me know.  I’ve had quite few emails from readers asking when my next post was going to be so I thought I’d better get to it.  I apologise for the long absence (I think it’a been about a YEAR) and thank you all for your frequent comments and questions about the blog; I’m glad it is helping so many of you understand what it’s like to live with hydrocephalus and what to expect when facing surgeries/ICP monitoring and so on. I am absolutely going to try and write here more frequently now things have calmed down a little.  Rather a lot has happened in the last few months, most of it good!  At the moment I’m pretty under the weather with a horrible virus (not good) which seems to be lasting an eternity (not good) and I can’t remember the last time I felt this rough, which means my immune system must actually usually be quite effective at fending off such viruses (good).
So…update on the charity side of things!  Well I’m still waiting to get my charity  registration number – this process seems to take quite a long time but I believe I’m nearly there.  The website is pretty much finished and ready to go; I may put a link to it at the end of this post if I’m feeling brave enough.  Please bear in mind when you have a look at it that it was designed by ME.  I am not, by any stretch of the imagination, a web designer.  So yes, it’s basic but I hope it gets the message across about what we do.  By the way, I need a good logo – I’m not even going to START trying to design that – so if anyone has had experience of getting logos designed rather cheaply (I’m paying for it so there’s a budget!) please send any suggestions this way and they’ll be very welcome!
In March this year, Reach Another Foundation flew over to the UK so we could all meet up again.  Reach Another Foundation are a charity Lewis and I donated some shunts to a couple of years ago, headed by Marinus Koning; I wrote about this in an earlier blog post.  Just to confuse you, although Marinus is his name, everyone who knows him well calls him ‘Dick’ and he said I could call him this.  So when I talk about Dick I actually mean Marinus.  Same dude.  Reach Another Foundation work in Ethiopia and have done amazing work out there.  I mean, seriously impressive.  They work to improve access to medical treatment for hydrocephalus and spina bifida and have also opened Ethiopia’s first school dedicated to the education of autistic children.  As if this wasn’t enough, they are also training neurosurgeons out there; in 2009 there was only one neurosurgeon to treat Ethiopia’s population of over eighty million.  Thanks to Dick, his team and the programs they have set in place, they are on target to have twenty-five neurosurgeons by 2020.
So where do we fit in?  Well, the first fantastic news is that Lewis and I have been joined by a third trustee; Greg James, consultant paediatric neurosurgeon at Great Ormond Street Children’s Hospital.

Greg James photo

Greg James; consultant neurosurgeon and our newest trustee

 This has been a great development for us because not only is Greg an amazing surgeon and a very nice guy to boot, but he and Lewis are going to fly out to Ethiopia with Reach Another Foundation to (fingers crossed) start up a training exchange.  The plan (still being discussed) is to fly the trainee neurosurgeons over here to observe Lewis and Greg in theatre and learn as much about our techniques as possible (they are not permitted to actually carry out surgery here due to frankly ridiculous amounts of rules and red tape – nice one, UK).  Then Lewis and Greg will fly out to Ethiopia with them later and oversee them performing (or assisting with) said techniques on the patients over there.  And of course whilst they are there they will be doing a whole myriad of other things; Greg is taking over hygiene protocols recently set up in Great Ormond Street (which amazingly reduced the infection rate by a THIRD) to set up in Ethiopia – just imagine the impact it’s going to have in a place where infection is rife.  And me, what do I get to do whilst the boys are out in the field, working hard?  Alas, I cannot go with them as I can’t fly (head pressure issues) so I’ll have to stay at home like a good little 1950s housewife and keep things in order!  I know my place.  Just kidding.  I have a lot to be getting on with; we have now established the shunt donation scheme and put it to the test in April with the mother of all deadlines.  Whilst Reach Another Foundation were here in February (I got to meet the whole team – around ten in all which was lovely) they told us about their next trip out in May when they would need all manner of surgical equipment as they were going out to perform some overdue operations on children with spina bifida and hydrocephalus.  In Ethiopia as you can imagine, they have literally nothing.  I asked them to send me the list of equipment once it was finalised and I would see what I could do about getting as many items as I could for them.  Well, cue three months of frantic running about.  First I asked hospitals, clinics and neurosurgical centres; none of them could help (although they very much wanted to).  And we can literally thank our current government for that.  The cuts they have been making to the NHS means that hospitals are clinging on tooth and nail to every last bit of equipment; any items not used have to be sent straight back to the manufacturer and cannot be donated.  What a change to a few years ago when I first applied for shunts.  I got a ‘yes’ from the first hospital I asked.  Whilst this is all very understandable from the hospitals’ perspective, for me it was a logistical headache.  Just where could I get these items from?  The list was long, the items were multiple and expensive and, not being a surgeon, I didn’t know what any of them were.  Oh, the irony; I’ve come into direct contact with these very instruments time and time and time again, but because I’ve been flat out asleep, I’ve never seen one of them (thank God from the look of some of them to be honest).  In the end, in April and just as I was about to give up (I HATE giving up), I had an appointment with Simon, my hydrocephalus advisor at Queen Square, who I’ve spent so much time with over the years that he feels like a friend and not a healthcare professional.  He knows about my project and always takes a very keen interest in it.  I told him of the struggle I was having (I had obviously already asked him if Queen Square could spare anything) and he suggested going straight to the manufacturers.  This may seem a blatantly obvious course of action to many of you reading and I had considered this way back at the beginning, but dismissed it because to my way of thinking they would be making a direct loss by donating items that they could otherwise sell at full cost.  However, Simon said (a great game) to bear in mind that even though these are businesses making products to make profit at the end of the day, they are doing so within a sector where an awful lot of goodwill exists.  I had seen this first-hand with the companies who have donated shunts to us before but this list was so extensive (and expensive) that I hadn’t held out much hope from going down that path again.  But Simon urged me to try.  The dude is right about pretty much everything most of the time so who was I to argue?   So I sent out a fleet of what can only be described as begging letters to all the manufacturers of the products I was after.  And back came yes after yes after yes!  In the end I had over half the list of items; some of them were simply not in stock (but are on their way to me now for Reach Another Foundation to take with them on their next trip out) and a couple of the items I found out later cost £20,000 a piece!  Oops!  There I was asking if they could spare eight, or ideally sixteen!  I forget sometimes how much of a learning curve this all still is.  Note to self: next time find out how much the items are BEFORE you start asking.
However, we had a good result and especially from Sophysa (who have donated shunts to us before and happily handed over ten full kits, instruction manuals and shunt passers) and Single Use Surgical, who donated pretty much everything else.

donationsalltogether1

Just look at all those lovely donations – thousands of pounds-worth! L-R, Ciara Baxter (volunteer for Reach Another), Lewis et moi.

So in May I went to London to meet Ciara, a volunteer for Reach Another Foundation who I had met a couple of years earlier when we sent the first donated batch of shunts out to Ethiopia with her. I met her in London, took all the equipment up with me and we met with Lewis in his office to do the official hand-over and to take some photos as well, to thank the companies who had donated.  Greg unfortunately couldn’t make it (trying to get all of our schedules to coincide is usually impossible) but we got some good photos done. I felt a bit bad that we’d had to leave Greg off the photo and Lewis suggested Photoshopping him in.  No doubt as a joke but I immediately saw a fun challenge there (I have no idea how to use Photoshop) and tried to stick him into our photo.

Greg Came Back  (1)

As if by magic, Greg appeared.

Which kind of worked, only I’m slightly turned away from him and he’s off to the side a bit so it looks like the three of us are trying to edge him out of the group!  So that photo will not be sent to anyone because edge him out we will never do.  And  so off to Ethiopia the donated items went!  Dick contacted me to say that the donations (needless to say) had been a hit and the surgeon receiving them had been moved to tears.  Incidentally, the surgeon is Dr Yordanos who is Ethiopia’s first and only female neurosurgeon.  They are starting up a hydrocephalus program over there so Dick is going to let me know about it as soon as we can Skype and hopefully we’ll be able to help with that in some way.  The donation programme is ongoing and is not limited to shunts only; all neurosurgical equipment and also general surgical items are being received.  I’ve just had notification of a lot of surgical masks which I’m following up and we now have some Penfield dissectors (neurosurgical stuff) on their way.  Currently I am  getting a database of participating hospitals/clinics and manufacturers together to make all this run a bit more smoothly.  And looking into storage space too!!

  The other thing I’ve been working on regarding the charity is our shunt symptoms/diagnosis tools to send out to new parents and parents-to-be in more rural areas.  I have now legally acquired design rights so I can safely reveal it; we have opted to use line drawings rather than photos shown but this gives an idea of how the design works. imageedit_1_2314091879 The symptoms show ‘good’ symptoms on one side and ‘bad’ hydrocephalus symptoms on the other.  We have not used words as literacy levels in developing areas vary greatly so thought it best to use visuals only; then we can send it out to any area and be sure that the recipients will be able to use it properly.  On the reverse-side of the card will be photos showing parents how to use the attached, specially-modified tape measure (which Lewis and Greg are in charge of) and then images showing to seek help if the tape measure reveals a too-large head circumference.  We may need to include a chart on the reverse-side of the card too but will finalise this later. imageedit_3_6437559206 The tape measures will be attached to each card in a way which means removal is near impossible, so they cannot get lost.  The symptoms card itself can also be blown up to poster-size so it can also be displayed in waiting rooms in hospitals and health clinics.   I am hoping to get the tape measure design finished by the end of the year and then after we’ve tested it extensively at Great Ormond Street, we’ll be ready to go into production.   We have a charity in Vietnam (Helping Orphans Worldwide) who have said they’ll happily do the first distribution for us and who also have offered to help with the printing and production side of things.  Just how we’re going to get these out to the rural areas (where late presentation is one of the main causes of terminal hydrocephalus) I haven’t worked out yet but we’ll cross that bridge when we come to it.  Fundraising galore I think is going to be the answer! Hydrocephalus is going to happen but if we can educate parents in what to look for, to assess their own child and act quickly if their child is displaying worrying symptoms, this could really help to get children treated rather than it being too late and leading to a terminal diagnosis.

So that’s what we’ve been up to recently.  I have to shoo off for now but will update with more hydrocephalus-related info soon.  I’ve received ever such a lot of emails from you all with more questions about all manner of things so I think I’ll compile those into a new Q & A post.  Which I promise to do SOON.  Not in a year.

 

 

 

You Asked; I Answered – Shunts, Lifestyle & Strange Feelings.

2 Jun

**03 September update: I’ve been asked a couple of times recently about shunt malfunction symptoms so I’ve just posted the answer I gave to a recent letter below as the first question/answer under ‘shunt worries’ (with a few more bits of info!).**

*February Update* I have received a lot of emails overnight regarding this post (all good!)…it seems many of you are finding it useful.  I’ve also had some more questions so I shall keep this post up and update it as more relevant questions come in.  Also, many of you are sharing amazing things in the comments section of each post, so if you want to make contact with others in the same situation as you, have a read through then and maybe reach out if you feel so inclined!  This is a place for sharing and hopefully for putting people in touch too!

So in February I asked if anyone had any questions they wanted answering….and the answer was ‘yes’!

question markYou sent in a whole bunch of questions; some about lifestyle, some about surgeries, lots about strange feelings and ‘is this normal?’ concerns.  I’m so sorry it’s taken till the beginning of June to answer them all.  Things have been very busy on the Shunt Donation Project-front (which actually has developed into so much more than just shunt donation) and I shall update this in a separate post next week. As I got so many questions, many were repeated so I have divided the questions and answers into categories so you can hopefully find the answers you need quickly rather than scrolling through a sea of mixed-up topics.  I have not published any names (confidentiality is key!) and I have answered them honestly (if I don’t know the answer, I won’t try and answer it…although in a couple of cases I have sought expert outside advice – in the form of neurosurgeons!).  I hope you find them all to be helpful!

Shunt Worries

‘What are the symptoms when a shunt fails? Will I have enough time to react and go to the hospital to get treated?’
Shunt failure is the big, dark, spectre which seems to hover over all us shuntees at one point or another! It’s normal to worry about it but I’d guard against becoming obsessive about it as that can be very hard on you…I had my period of that about four years into having a shunt and I had to work hard to stop going into complete panic at the slightest hint of raised pressure. To be honest, in my experience when something has been wrong with my shunt..whether it’s overdraining, blocked or infected..I’ve known straight away. You just feel ‘wrong’. You will probably feel pressure in your head of some sort (this can indicate either low or high pressure as they can often feel very similar), your headaches may well worsen and you may get dizzy. But this can also mean you’re just on the wrong pressure and may need a shunt setting adjustment, not that anything is wrong with the shunt. Of course, you can feel headachey and dizzy if you get a heavy cold or virus too but with a proper shunt malfunction, the symptoms can come on pretty quickly. Uncontrollable vomiting is another common symptom with a blocked shunt and your vision may also be affected; my last malfunction made the vision in one of my eyes go very blurry. These symptoms are usually associated with shunt blockages or overdraining.  With an infection, believe me you’ll know about it! I used to ask my surgeon ‘so does it feel like ‘flu?’, before I had my first and he said it does but it’s more a ‘head flu’ and far more severe…he also said I would just know. And I did. When I got my first infection, I knew right away that I didn’t have ‘flu!  I had never felt so ill.  I had a temperature, my head was raging and my shunt tract was red along my neck; I literally couldn’t move and if felt like the whole of the problem was inside my head – which it kind of was as the CSF was infected!  I think you are right to be concerned about how much time you have to get assessed as waiting times in A&E are notoriously long. But they do tend to move a lot faster when you tell them you’ve got a shunt. If you are really suspecting a shunt malfunction, tell the doctor/ambulance staff that. Be direct and they will no doubt get you into the scanner quickly. If in doubt, go and see your doctor or call the secretary of your neurosurgeon and ask to have a quick chat with him/her. They usually never mind! It’s fine to be wrong and have your mind put at rest.  But as I said, don’t panic yourself into a state over it. You may well have no problems at all. Bear in mind that people tend to post about issues they’re concerned about on here as they are looking for advice or just to sound off but there are a great many people with shunts who just trundle along quite happily! Hopefully you’ll be one of those!

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’.
Yes it’s normal…and usually caused by scar tissue.  Scar tissue forms naturally after our body’s tissue is damaged.  The external scars we see, but the internal scars we don’t.  Bruising and scarring goes on under the skin as well as above!  It is fibrous tissue made of collagen which is produced to replace the injured skin.  The downside is that being fibrous, it isn’t flexible and can feel not only tight, stretched and uncomfortable but can also cause a considerable amount of pain if a nerve gets squeezed or pinched by it during it’s formation.  I’ve had scar tissue pain around my shunt valve, especially on my last shunt which was operated on over 15 times before it was replaced.  The skin around the valve became so thin it eventually broke down altogether and you could see the shunt valve itself through a little hole in the skin!  (NOT normal though so don’t worry about that!).  I couldn’t touch the area.  It was a sharp, stabbing pain which would come and go (the cold especially brought it on) and I couldn’t lie on it.  I went to my neurosurgeon, Mr Watkins, and he put me on some medication ….I can’t actually remember what it was now but it helped considerably with the pain.  It’s a complicated problem because operating to remove the scar tissue will only produce scar tissue!  If you have sharp, stabbing or throbbing pain anywhere surrounding your shunt, go and see your surgeon.

‘Hey! Have you ever have a cyst like “thing” going on right by the abdominal scar of a vp shunt?’
I haven’t personally had this but I know a few who have. A couple of them needed to have antibiotics, one had to have it drained and removed and another one just kept an eye on it and no action was needed.  Internal cysts can sometimes be caused by fluid build-up of CSF in the abdomen although this is pretty rare (known a pseudocyst).  They can form after multiple revisions or infections and can get pretty large, causing stomach distention and pain.  These are rare, however, and more commonly happen in younger patients.  Usually cysts on top of the skin contain fluid or semi-solid material and can result from infection.  Skin which has been operated on can become lumpy and bumpy; I have a couple of very ‘textured’ scars on my stomach!  But if you have a cyst, it’s best to get it checked out.  If you feel generally unwell  in addition, it could be a developing infection.  Keep an eye on it and if it’s bothering you, go to the doctor.

‘So this noise I’m hearing behind my ear where my shunt is…IS it my shunt?  Does it mean something’s wrong? It’s starting to worry me!’.
Don’t worry.  It’s very, very, very likely to be your shunt valve working!  When the shunt opens to drain fluid, it can cause a sound very alike to buzzing; it just means that the mechanisms are shifting to allow fluid to drain.  My shunt buzzes a heck of a lot but as Mr Watkins once said to me; ‘it should be a reassuring sound, because it shows that everything is working’.  Well, yes it’s reassuring but depending on how close the valve is to your actual ear, it can also become as annoying as hell!  By the way, if your shunt doesn’t make any noise, please don’t worry.  Some don’t.  My first shunt gurgled sometime but no buzzing happened…which is why when my new shunt was put in, I freaked out a little.  If you feel physically unwell when the buzzing is going on, you may need to check everything is working okay.  But if you feel fine and it’s just the noise that’s bothering you….well unfortunately there’s nothing you can do because even if you put your fingers in your ears, you’ll still hear it!

‘It’s been a couple of months since my shunt surgery (I had a programmable put in) and I still feel awful.  I can’t get comfortable and I was hoping I’d feel better than this.  Does it mean the shunt isn’t working?  What should I do?’.
I got a lot of questions along these lines. And I feel your pain.  Make no mistake, if somebody cuts open your head, drills through your skull, burrows a tube into your brain, all the way under your skin, down your body, into your abdomen and starts syphoning brain fluid out of it and then staples you up, you’re going to feel pretty crap.  For quite a long time.  Even if you previously had high pressure, it doesn’t necessarily mean you’re going to feel miraculously better once that high pressure starts to be relieved. Your brain may struggle to adjust to lower pressure.  You can get vertigo, tinnitus, nausea and horrible head pressure feelings and this can go on for a few months.  The key is to a) have patience and b) don’t be afraid to go to your surgeon if you really cannot cope with it.  It could be that you need your shunt adjusted again.  There is a window immediately after your surgery where you just have to rest, recover and take all the painkillers they give you…and even then it’s not pleasant.  But after about six to eight weeks, if you’re still feeling really bad, it’s probably time to see your surgeon to discuss what happens next.  It took me a year to recover from my second shunt infection which resulted in a full shunt revision and new pressure settings.  My body just couldn’t settle.  But I got there.  And so will you (and very likely in far less time than a whole year!).  Keep communicating with your surgeon and persevere.

‘What do you do when you feel bad all the time…it seems to be one thing after the other with me and I don’t like bothering my surgeon!  Should I only contact them when it’s really, really bad?!’
I got a few similar questions to this!  I really feel for you all because for ten years I was that patient too…I had one thing after another going wrong with me and I literally spent most of my thirties being ill, having surgery or recovering from it.  To give you a better idea, in 2008 the only month that I wasn’t in hospital was September.  For over ten years I had brain surgery on average once every seven months, which when you factor in the recover time, is a long time spent feeling bad!  Neurosurgeons are there to help you.  That’s why (and I know I bang on about this) finding one you can communicate with, who listens to you and who takes you seriously is CRUCIAL.  Mr Watkins is not my first surgeon; he’s my third.  I count my blessings I found him but it took four years of gruelling treatment and uncertainty before I decided enough was enough and that I really needed a different surgeon.  You will get to know your head very, very well if you have hydro!  Listen to it.  And take heed of those ‘gut feelings’ because believe me, they’re often spot-on!  You can feel pretty grotty with shunts without there being anything seriously wrong; it could be the weather, the fact you’re dehydrated or you may need a simple pressure adjustment.  But if you are feeling rough and it’s not getting better, call your surgeon’s secretary.  Make that appointment.  If it’s nothing, your mind will be put at rest but at least your surgeon is also learning triggers which are not good for you; it will help them build up a better profile of your individual situation and of what works for you.  You don’t need to go running to A&E with every little twinge, but if you’re really not feeling good, ACT.  The sooner you’re investigated, the sooner you can get the right treatment and your mind can be put at rest.  As Mr W said to me when I first met him and apologised for turning up in the hospital AGAIN, ‘I’d rather you were here so we can get to the bottom of this than at home steadily getting worse and me not knowing about it’.  True words, spoken by the sort of surgeon you should have or be seeking to have!

‘Does the weather really affect heads?  Because I seem to feel worse every time it rains!  I don’t think my surgeon would buy that though!’
YEEESSSSSSSSS weather affects us! And don’t let the doctors tell you otherwise.  Think about it.  How many non-shunted people have you heard complaining of headaches when it gets stormy?  Quite a few, I would imagine.  If you throw a shunt into the mix, it’s a little more complex.  I used to suffer a lot with weather changes but when I got my Miethke shunt, it kind of put a stop to it all.  Sometimes if it’s extremely wet and windy, I can feel it.  And I generally don’t like seasonal changes (Summer to Autumn or Winter to Spring).  But I know a lot of shunted folk who really do suffer.  It can be a good idea to keep a diary of when you feel really bad and make a note of what the weather is doing that day; you may start to see a pattern.  If you can, make a note of the weather forecasts and try to plan ahead a bit, so if we’re entering a spell of really bad weather (or whatever type of weather which is your trigger) maybe reduce your plans for those days.  Take it easy a bit, have the painkillers on hand and see how you go.  On the plus side, if you do discover a pattern related to the weather, it can be a relief in itself to know it’s not the shunt playing up!

Lifestyle

‘Any words of precaution or advice re long distance flying – problems encountered at security gates etc?’.
Generally people with shunts can fly.  I know many who do.  I choose not to, primarily because I have become so pressure-sensitive over the last fifteen years that even driving up into the local hills can affect my head badly if the weather is wet.  I encounter pressure issues just standing upright at the moment, so I don’t think that flying thousands of feet into the air would be the best idea for me. I also don’t relish the thought that if I do get ill on the flight to wherever it is I’m going, I’ve then also got to get home!  I think you have to be the judge of whether you fly or not…and I would always run it by your surgeon, especially if you planning on a long-haul flight.  Some people are absolutely fine with it but some are not. A friend of mine had to fly to South Africa and after a bad initial flight (she became quite unwell on the plane and wasn’t good for some days afterwards), her surgeon gave her medication to take before, during and after the flights.  And even though she didn’t feel great, she got through the consecutive flights a whole lot better, so medication may be a possibility if you’re worried. You can always start off with a short hour-long flight first to see how you go before going for a long-haul. Regarding the metal detectors, I would say carry a shunt card (you can get them if you’re in the UK from Shine Charity).  That way you can avoid going through and they ‘wand’ you instead (but you have to instruct them not to wand over your shunt valve!).  Some shunt models these days no longer use magnets – mine doesn’t – but to be on the safe side, I’d walk around the detectors instead of through them!

‘Have you experienced any issues with trying to get a job since you’ve had hydrocephalus?’
Yes I have.  I have worked from home for most of my shunted life, after initially trying to return to my old, full-time, office job and lasting only three months!  Again, it depends on the individual; I know so many people with shunts who have such a complex array of fluctuating symptoms that they don’t work at all and some (but to be honest only a small handful) who work full-time.  It irks me no end with the recent skewed rhetoric of people on benefits being ‘scroungers’ or ‘fraudsters’ which seems to have seeped into the mindset of many in the last couple of years (thanks in part to both the government and the tabloid media).  Because let’s face it, it’s hard enough living day-to-day with a condition like this…being told you can’t do your job any more can absolutely floor you.  We need a purpose to get up every day to feel complete and having no job or opportunity to work can be extremely difficult.  However, there are certainly things you can do to improve your chances of work.  Firstly, think about what you’re good at.  It doesn’t have to be office work.  You might be creative and make amazing collages or artworks, you might be great on the piano or you may love writing.  Could you make any of these work for you from a freelance perspective?  Could you teach piano?  Could you proofread documents for people?  Could you set up a website selling your creative goods?  It may seem farfetched to you at first but anything is possible…even when you’re not well a lot of the time…if you put your mind to it.  Some charities and organisations can give you some great advice and help and despite my frustration at some of the statements issued by the government recently, there are some good resources on the government website; try Scope, Shaw Trust,and help page at gov.com.  By the way, most of the help resources refer to ‘disability’; that seems to be the blanket term for people who are physically disadvantaged either by chronic illness or disability so don’t rule them out if you think the term doesn’t sum your particular situation up very well!

I  set up a business teaching singing from home for many years.  When I was well enough, I worked at stage schools and music studios.  When hospital stays hit, I went back to teaching from home when I recovered.  After a particularly nasty shunt infection in my abdomen which resulted in long-term pain, singing wasn’t as easy so I put the word out there and found some work-from-home opportunities via friends.  It’s amazing what will come your way if you put the intent, thoughts and word out there.  Try working part-time in a shop or office and if it proves to be too hard, don’t despair…sometimes we just need to think outside the box a little.  If you cannot work at all, maybe try volunteering one day a week to get you out of the house and feeling productive.  Maybe do an online course or take up a hobby which truly inspires you.  The most important thing when it comes to working or trying to work with a chronic illness is NEVER FEEL GUILTY.  You have enough on your plate without a guilt trip getting in on the act.  Ignore the ‘get people back to work!’ cries from the DWP; if you really can’t do it, you can’t do it and that is never your fault.  I have received a lot of emails recently from people worried sick about DWP work assessments coming up but I’ll cover that in another post another time (soon, I promise).  Take your time, think about what you’d like to do and see if you can make it happen.

‘I read your post about hangovers not sure if I should actually drink at all and my surgeon never mentions it.  Advice?’
That was the last hangover I’ve had! It truly put me off for life!  My advice is to be sensible; if you have a drink and find that it gives you a headache, limit yourself to that one or don’t drink. If it’s okay, probably you have no need to worry as long as you don’t go binge drinking or do anything silly.  I get a headache from one drink so I don’t often drink at all these days. I had a glass of champagne on Saturday at a friends 40th but I made sure I drank PLENTY of water before and afterwards so it wasn’t too bad.  I just prefer these days to not indulge.  At all!  Bear in mind the dehydration side of things…if you have a shunt you need to drink more (water!) than most anyway on a day-to-day basis, so having dehydration after drinking isn’t a good idea.  Just up your levels of water if you are drinking, watch the amount and be sensible.  And you’ll probably have no problems.  Or hangovers!

‘I’m 17 and love gigs but I can’t stand loud noise since my shunt was revised last year.  I either don’t go, or go and suffer.  The cinema is just as bad.  Is there anything I can do?’
Yep..for the gigs, take earplugs.  I’m serious.  I love my live music too and I can go quite happily if I take my earplugs (foam ones).  Yes it’ll muffle things and the music won’t sound as good but it’s better than missing out altogether.  Regarding the cinema, that’s a little harder as the noise levels go up and down.  Once I went and took cotton wool as well as foam earplugs and the cotton wool was much better!  It protected my ears enough but enabled me to still hear the dialogue.  I have tinnitus in my left ear from my first shunt surgery and ever since then haven’t been able to stand loud noises (thunder, balloons popping, cars backfiring, fireworks – I hate ’em all!!).  So cotton wool and earplugs are my new social friends.

I hope these questions and answers help some of you….don’t forget, you can always ask more! I’m going to address this blog more frequently now the last few months of hectic-ness are over so I’ll get back to you more quickly this time. Have a good rest of the month, y’all!

Ask-Me-Anything February!

28 Jan
Er…how can it ALREADY be February?!

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).

They are, however, REALLY, REALLY MAGIC.

They are, however, REALLY, REALLY MAGIC.

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. question mark 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.

I told you I wasn't wearing them.

I told you I wasn’t wearing them.

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