Medically Overwhelmed

As I have written before, I have suffered with headaches, dizziness and migraines for as long as I can remember.

You can catch a brief re-cap of my journey so far here.

This morning I had an appointment with a neurosurgeon and took my Uncle along with me.  D and I decided it was best for D to stay at home with H so that at least one of us would be able to concentrate, or at least try to concentrate, on what the neurosurgeon had to say.

The neurosurgeon introduced himself to my Uncle and I as a pediatric neurosurgeon.  He could clearly see my brain whirring thinking “Why am I under the care of pediatrics when I am almost thirty years old?” As he went onto explain, many of my conditions are usually picked up in babies or young children.  However, in some cases many symptoms remain dormant well into adulthood, if indeed symptoms ever occur.  The vast majority of diagnosis that occur in adults are usually incidental, that is to say found whilst investigating something else and people can, on the whole merrily continue with their lives.

Of course, me being me, I have to be unique.  Or maybe not quite unique but certainly rare.  It is certainly rare to find a person suffering from hydrocephalus, chiari malformation and a large cyrinx.  The fact that I have all three makes things complicated.

For example, usual treatment of hydrocephalus would be putting a shunt into my brain to ‘flush’ excess fluid away.  Only this isn’t possible due to having had it untreated for so long, one of my ventricles in my brain is almost 10 times the size it should be.  To explain, if it was to happen over a short period of time, weeks, months, overnight, a person would most likely die due to the pressure on the brain.

 As I explained previously, a cyrinx is a fluid filled cavity in the spine, usually caused by undue pressure put on it.  In my case the pressure is caused by the hydrocephalus.  In fact, my cyrinx is so large, it goes all the way down my spine which means it is only protected by approximately 5mm of tissue.  This means that potentially, even "minor" whiplash, could have quite severe consequences for me.  Way to rank up my paranoia over being involved in a road accident hey?!  I now assume that one of my dreams, of doing a bungee jump, won't be happening. I was then asked if I had any children or siblings and whether they have the same features as me.  Such as protruding eyes, eyes set further apart than normal and no bridge on my nose.  And yes they do.  H, my brother and one of my sisters.  My other sister is technically my half-sister, having a different Dad.  The neurosurgeon advised that there are a number of genetic conditions which can cause these features, which may or may not be linked to all of neurological features.  My Uncle then mentioned that my brother temporarily lost his vision a few months ago which was put down to extreme high blood pressure and so he was put on tablets, whereas I have unusually low blood pressure.  With that, it was suggested that I be referred for genetics screening, most likely H and my siblings will then be tested and given MRIs. So what's next? Another MRI as my last one was in May so we need to find out if there have been any chances in the last 6 months, there definitely have been from the MRI last October to the one in May. Genetics screening to find out if all these things are linked and if so whether my siblings and/or H suffer with it. MRIs for H and my siblings as well. It's been a long, hard slog to get to this point and it seems it is by no means over yet, rather just the beginning. I cried earlier today.  Not because of fear or worry.  Rather relief.  Relief that at long last I might actually get the treatment I need.  Relief that actually there may well be hope after all and I won't always panic if I don't have paracetamol or ibuprofen on me.  Relief that I may soon be able to stop worrying if I am going to feel faint or light-headed just by picking H up. Most of all I feel vindicated.  All life I have had people say, or at least insinuate that I am a hypochondriac.  I was in agony during pregnancy and told to get on with it by the people who are meant to love me.  I feel like jumping up and down and shouting "I TOLD YOU ALL THERE WAS SOMETHING WRONG WITH ME!" except I can't physically jump up and down.  Because, y'know, my spine is filled with fluid.

Unusually for me I am not worrying about what the future holds.  I am optimistic actually.  Hopeful that if it is discovered there is something genetically wrong, then H and my siblings can be tested or have the MRI scans for the conditions and be treated without having to fight like I have.  Without having to go through years of being dismissed, without hearing whispers at work.

What is the most overwhelming thing you have gone through?

Thank you for reading.

8 thoughts on “Medically Overwhelmed

  1. Oh wow, you have every right to feel vindicated! I'd be shoving a banner in their faces saying, "I told you so!" as often as possible. I hope that the specialist now gets you the treatment you need.

    Medically overwhelming? The Boy's birth and then 18 months later being told by an (unrelated to his birth) gynaecologist that I was right and he should never have been a vaginal delivery. Vindication right there.

    1. MummyGlitzer

      Vindication feels pretty good but it's also frustrating!

      My referrals are now being highlighted as urgent because my Uncle and the neurosurgeon were so appalled that it has taken so long from my original referral last year (and that there was a six month gap after I moved despite me repeatedly requesting notes to be transferred).

      It sounds like you had a traumatic delivery. Poor you. I think there is a lot to be said for our own instincts.

  2. I'm so glad you are getting some answers, and feeling optimistic about the future. And yes, I'd be saying "I told you so" too. I have problems with lower back pain (sometimes, not all the time) and when it is really bad it is often made worse by people making me feel I'm making a fuss about nothing. So of course I don't want to ask for help, and instead I do things that make it worse. Frustrating. My most overwhelming thing was probably the breastfeeding problems I had with my first son, or perhaps the experience of having him in school and unhappy for a year and a bit before we took him out and started home educating. I don't know which was worse. I can't think about either of them too much, or I wouldn't be able to function.

    1. MummyGlitzer

      That tends to be how I deal with things as well when it all gets too much, I just try not to think about it!

      That must have been really hard, seeing your son unhappy at school, all we really want for our children is for them to be happy isn't it?

  3. Wow. This sounds really scary :-/ but I totally understand the feeling of relief for you now knowing what is wrong. I twill be interesting to hear what the geneticist finds. My son had genetic testing and it took about three months for the cells to be grown and tested but that was for a syndrome the geneticist ad decided he might have so they knew what to look for. There have been a few overwhelming things with my son. All equally overwhelming actually so it's impossible to choose one. seeing him go through open heart surgery at five months old and finding out he is profoundly Deaf in both ears get joint number one position.

    Best of luck with your follow up appointments x
    An Exeter Mum recently posted..Silent Sunday 11th November 2012My Profile

  4. Wow! I don't know even where to begin to digest your news. You knew something wasn't right and all I can say is thank goodness you have pushed and pushed to get some answers, albeit complicated ones. Medically this sounds totally overwhelming but I am assuming (and feel free to hit me if this is wrong), that you will now be getting the support and help that you and H need so this becomes more manageable for you? Big hugs hunny bee xx

  5. Rach I'm going to get you a t-shirt with "I Bloody Told You So!" printed on it! Wow. This all sounds very frightening and overwhelming but I'm so relieved that steps are being taken towards finally getting you the treatment that you need. Big hugs xxx
    Sara recently posted..AftermathMy Profile

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