Hiccup...
Well, folks - it's been a while since I wrote. All I can say to prepare you is that you should probably sit down before reading on...
The last few weeks have been a little chaotic. Firstly, I failed my PhD viva. There are a number of reasons, some are my responsibility, some are not. However, this pales in comparison to the news I learnt the following week - I have a benign brain tumour. Maybe another day I'll give you some history, but I'm a bit knackered at the moment, so you get the short-story version!
The tumour is most likely the reason I've lost some of my hearing in the right ear (my complaints about that are why they took the revealing MRI in the first place) and may also account for the headaches I've had for a number of years - it's a slow growing tumour that has been there for some time. In french, it is a neuronome d'acoustique or an acoustic neuroma in english.
The French medical system has been absolutely brilliant - two weeks from request to MRI, for instance - and the doctors would like to get the tumour out as soon as possible. In effect, this means before Christmas. There are a number of different routes for the surgical entrance, with different risks and benefits to each. One of them, for instance, gives the surgeon very good access to the tumour and a high likelihood of complete removal, but involves irreversible and complete hearing loss in the ear. Other risks include facial paralysis, which scares the shit out of me, frankly.
It is also (apparently) likely that I will have some balance problems afterwards (though I've developed some in the last week that are not very pleasant) but these can be remedied through physiotherapy - reeducation of the brain teaching it to use the single remaining vestibular system in place of two of them, and use of the eyes and foot pressure to compensate.
The raw numbers: acoustic neuromas are found in about 10% of 'normal' autopsies - people who have died from other causes. They are too small to have caused any effects. Neuromas large enough to cause symptoms are found in only 1 in 100 000 people. They range in size, and what I have (28mm diameter) is typically termed 'large' but not 'enormous' - most surgeons are not perturbed by the size of mine. The operation involves two surgeons, an ENT (ear, nose & throat) to expose the cranial cavity, and a neurosurgeon to remove the tumour. Time on the table seems to range from 5 to 10 hours. Hospital stay is about 10 days (in France), and post-op recovery requires about two months off work. A 'good' surgeon is generally measured by the number of tumours they remove each year, and their personal complication rate (hearing loss, facial paralysis, infection, etc.). The figures I've heard from a number of friends put the big centres at about one neuroma removal per week as a 'good' figure - less than once/month is inadequate. The massive units (Los Angeles House Unit, for instance) are doing several per week. But given the incidence rate, you really have to be in big centre.
It's still not clear to me if I should have the operation in Grenoble (1-2/month, complication rate as yet unknown) or go somewhere else (London, Paris?). The convenience of being here is far greater, but in 5 years I'm not sure convenience will outweigh a poor outcome.
In combination with all this, I'm now having trouble getting the life insurance required to buy our house. I'm still in progress on this one, but things aren't looking great - if worst comes to worst, we'll have to pull out and find somewhere else to live, which is not a prospect we'd relish at this point. Burn that bridge later though.
Sorry give you all such a downer - and thanks for the emails you've sent - they've been great!
The last few weeks have been a little chaotic. Firstly, I failed my PhD viva. There are a number of reasons, some are my responsibility, some are not. However, this pales in comparison to the news I learnt the following week - I have a benign brain tumour. Maybe another day I'll give you some history, but I'm a bit knackered at the moment, so you get the short-story version!
The tumour is most likely the reason I've lost some of my hearing in the right ear (my complaints about that are why they took the revealing MRI in the first place) and may also account for the headaches I've had for a number of years - it's a slow growing tumour that has been there for some time. In french, it is a neuronome d'acoustique or an acoustic neuroma in english.
The French medical system has been absolutely brilliant - two weeks from request to MRI, for instance - and the doctors would like to get the tumour out as soon as possible. In effect, this means before Christmas. There are a number of different routes for the surgical entrance, with different risks and benefits to each. One of them, for instance, gives the surgeon very good access to the tumour and a high likelihood of complete removal, but involves irreversible and complete hearing loss in the ear. Other risks include facial paralysis, which scares the shit out of me, frankly.
It is also (apparently) likely that I will have some balance problems afterwards (though I've developed some in the last week that are not very pleasant) but these can be remedied through physiotherapy - reeducation of the brain teaching it to use the single remaining vestibular system in place of two of them, and use of the eyes and foot pressure to compensate.
The raw numbers: acoustic neuromas are found in about 10% of 'normal' autopsies - people who have died from other causes. They are too small to have caused any effects. Neuromas large enough to cause symptoms are found in only 1 in 100 000 people. They range in size, and what I have (28mm diameter) is typically termed 'large' but not 'enormous' - most surgeons are not perturbed by the size of mine. The operation involves two surgeons, an ENT (ear, nose & throat) to expose the cranial cavity, and a neurosurgeon to remove the tumour. Time on the table seems to range from 5 to 10 hours. Hospital stay is about 10 days (in France), and post-op recovery requires about two months off work. A 'good' surgeon is generally measured by the number of tumours they remove each year, and their personal complication rate (hearing loss, facial paralysis, infection, etc.). The figures I've heard from a number of friends put the big centres at about one neuroma removal per week as a 'good' figure - less than once/month is inadequate. The massive units (Los Angeles House Unit, for instance) are doing several per week. But given the incidence rate, you really have to be in big centre.
It's still not clear to me if I should have the operation in Grenoble (1-2/month, complication rate as yet unknown) or go somewhere else (London, Paris?). The convenience of being here is far greater, but in 5 years I'm not sure convenience will outweigh a poor outcome.
In combination with all this, I'm now having trouble getting the life insurance required to buy our house. I'm still in progress on this one, but things aren't looking great - if worst comes to worst, we'll have to pull out and find somewhere else to live, which is not a prospect we'd relish at this point. Burn that bridge later though.
Sorry give you all such a downer - and thanks for the emails you've sent - they've been great!
posted by Kirstin Jeffrey Johnson at 3:19 pm
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