Progress at last?

As you may already know, I have suffered with all sorts of headaches and migraines for as long as I can remember.  As a child I was called a hypochondriac, an attention seeker, despite collapsing once due to the dizziness which often accompanies my headaches.  So it was only in the Summer of 2011 that I finally pushed my GP for a referral for investigations.  At this point I was still employed and so was able to go private and was seen within a week.

Image courtesy of Ambro / 

My original referral was to an ENT specialist as we suspected there were issues with my sinuses.  Within 10 minutes of being in his office, the specialist said it didn't sound like there were issues with my sinuses but requested a CT scan anyway.

My CT scan took place two days later and I received a call at 9pm that night (got to love private medics!) to confirm that my sinuses were clear but that there appeared to be a shadow that the scanning people were concerned about so I was to return the following Tuesday for an MRI scan.

Following the MRI scan I saw a neurologist in Southampton who diagnosed me with hydrocephalus, Chiari type 1 Malformation and a syrinx.  To summarise, I have a lot of excess fluid on my brain,a cerebellar tonsil coming out of my brain pushing into my spinal cord and a fluid filled cavity in my spinal cord.  At this point we did not know the full extent of the syrinx, that is the cavity in my spinal cord.

In the meantime I had been given medication to lessen the migraines which made me feel like a new woman within days.

That was the end of 2011 and then I was made redundant and we moved from Bournemouth to Bristol.

For some reason it took almost FIVE MONTHS for my medical records to move from my GP surgery in Bournemouth to my new one in Bristol.  And despite frequent chasing my hospital records still haven't moved.

Finally in May 2012 I had a second MRI, this time to include the whole of my spinal cord rather than just my brain.  However, it wasn't until October that I was able to see a neurologist to discuss the outcome of that!

I was greeted by the neurologist commenting that I was a highly unusual and complex case and he was sorry for keeping me waiting but this was largely due to him not having a clue and needing to discuss my MRI with a colleague.  This MRI had shown just how big my syrinx is and it is big.  Pretty much most of my spinal cord has this cavity yet I don't display normal symptoms which include numbness or constant pins and needles in the hands.  Along with the hydrocephalus and chiari malformation it was decided that I required an urgent referral to an endoscopic neurosurgeon.  The letter that followed highlighted that, as if I don't have enough wrong, I also appear to have a cyst on my brain!

So I have an appointment to see a neurosurgeon on 12 November. At 9am.  On a day my husband is working and I will have to go with H.  Likely to be a taxi job since it takes an hour or so on the bus and is during school run time so no chance of a lift!

However, 10 months on from my move to Bristol and the hospital STILL do not have my original medical notes.  I have called Southampton General Hospital, Southampton Spire Hospital, Bournemouth Nuffield and Frenchay Hospital several times each over the last 10 months and not one of them seem to want to take responsibility for getting my records to Frenchay so the neurology department can discover whether any of my conditions have progressed at all, which is a very real possibility and the syrinx in particular has the potential to cause permanent nerve damage.

Whilst I understand the thinking that these conditions are congenital and usually discovered by accident, in my case they cause debilitating migraines during which I am incapable of looking after my son properly, much less go to work (in the event I ever find another job).  Telling me "You've lived with it for almost 30 years so far" (the favoured phrase by medics and non-medics alike) is far from helpful.

I hope that at long last I am finally closer to being well and that these migraines may be gone for good!

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4 thoughts on “Progress at last?

  1. Oh my goodness! Poor you! What a complete nightmare. I hope the neurosurgeon says something useful, your notes turn up and they find a solution for you.

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