{As ever with the Chronic Life series, I must point out that I’m not a doctor or medical expert, just a patient like any other. My thoughts and feelings are just that; medical advice should be sought from your specialist.}
Getting new additional diagnoses when you’ve lived with Migraine for most of your life is a strange and disorienting thing. Finding myself dealing with Neurosurgeons and having a hole drilled in my head to assess the pressure in there (see my ICP Monitoring post here) has been a dizzying experience both literally and figuratively.
Since the MRI I had back in January 2016, I’ve had to get to grips with two diagnoses that were completely new to me. The MRI itself showed that I have a Chiari Malformation Type 1 (click here for a brief explanation of what this type of Chiari is). I had no clue what that meant so had to spend some time finding reliable sources of information to educate myself before meeting with my Neurosurgeon…it’s now September and I feel like I’ve been to the surgeon’s clinic, the surgical ward and MRI department so often that the particular part of West London has become a familiar stamping ground for me & my husband. Fortunately it’s quite a pretty square so we’ve managed to do a little outdoors coffee drinking, in a busy part of London yet surrounded by trees, before/after appointments; you’ve got to take your little relaxing moments wherever you can find them when living this Chronic Life!
The next step was meeting with my Neurosurgeon. He recommended that I have ICP Monitoring rather than going straight for the decompression surgery that is the treatment (but sadly not a cure) for Chiari. He wanted to know what the pressure inside my head was like.
As it turns out this was a good call on his part, as the pressure is high. Having analysed the readings from the monitoring procedure, the Neurosurgical team believe that what they’re seeing on my results is high pressure that isn’t being caused by the Chiari but is a problem in it’s own right. This raised pressure (the term they’re using for it is Benign Intracranial Hypertension or IIH) needs to be addressed, as the team have advised me that leaving it as it is would pose a risk to my sight, memory and cognitive function. They expect that addressing the pressure will be of benefit in terms of the daily pain, but how much remains to be seen. It will also cut down some of the risk involved in the decompression surgery in the future, should I decide to have it.
Here’s the part that’s a little scary for me – they have strongly recommended that I have a shunt placed in my brain to drain the excess CSF fluid down to my tummy. The hospital I’m seen at it is well known for excellent standards of Neurosurgical care and I know that my surgeon does far more complicated surgeries than this but still, I’m a little anxious at the prospect of brain surgery (I was proud of myself for getting through the ICP monitoring!). The shunt procedure has risks attached and is something I’ll live with for the rest of my life, so I’m learning as much about it as I can while I’m on the waiting list.
(Me with the pressure bolt monitoring thing attached)
But lurking behind all this in my mind are other questions – how long have the Chiari and IIH been there? If I didn’t have a history of Chronic Migraine in my own life and in the family, would these disorders have been picked up sooner? SHOULD they have been picked up sooner, despite my Migraine?
I realise that it would probably be wise to put these questions aside, as definitive answers to them are very unlikely to be forthcoming! But still, I think they are entitled to exist and talking them out with my family and blogging about them may help me to process them. I can’t prove anything in relation to these questions, but here’s what I think/feel: I think that my long standing Migraine diagnosis caused the people treating me to attribute ALL neurological symptoms to Migraine. The specialist I had for over a decade was well-respected with good cause and often went beyond the call of duty to support me and my family, so I don’t feel angry that these conditions weren’t picked up – indeed, I believe that the Chiari may have been less of a problem at that time as my condition has deteriorated since the birth of my daughter (her delivery was hard and I suspect worsened the Chiari, though I can’t prove it). As for the pressure – was my pressure high 5 years ago, 10 years ago, 15 years ago? Does the steady and devastating increase in debilitating daily pain & symptoms over recent years mean that my pressure has been climbing during time period?
These questions have the potential to be the kind that circle around in your head at night but never really get answered. One thing I do firmly believe is this – it is well worth discussing with your specialist such tests as an MRI and if need be an LP to check for neurological abnormalities or pressure problems, if you’re living with Migraine that fails to respond to treatment or worsens compared to what you’re used to. Of course most of the time the outcome will be results that are all clear, but I feel that my newer diagnoses were masked by the Migraine. My specialists and I have no doubt that I personally do in fact have Migraine that I’ve inherited genetically but it is not unheard of for people with Chiari, for example, to be misdiagnosed as having Migraine and/or Fibromyalgia (check out the Mayfield Clinic Website for more details on Chiari symptoms). Of course, there may well be many others out there who, like me, have Migraine AND another neurological condition. I’m left feeling that I should have asked for tests back when my condition first deteriorated to the point where I had to stop teaching and became largely housebound (as I still am).
Having gotten all that off my chest, it’s time to go back to my research on what to expect from life with a VP shunt.
Wishing you good luck and happy days,
Kindra x
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Posts you might enjoy:
Everybody’s An Expert On Migraine.
Migraine and Coping With Hospital Stays.
Making Medical Appointments Work For You.
