Howll
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I use the term results loosely because this is an absolute shambles. Apologies in advance for what's probably going to be a lengthy post.
So I received a letter today, after having an EEG on the 31st May, and being told my results would be with me within two weeks.
The letter reads:
"The recent EEG of 31st May showed a normal background but with some transient slow and sharp activity over the right fronto-temporal leads and a single more generalised slow activity.
We will review as previously planned"
So, that means absolutely nothing to me, apart from I'm guessing the seizures start in the right frontal lobe. That's fine, except when I went for my initial appointment with my epileptologist, he did some "reaction tests" and diagnosed me on the spot with LEFT frontal lobe epilepsy. I thought that was odd without any tests.
So, in April I had an MRi, I've never received the results for them despite again being told they'd be two weeks. So upon receiving this letter I mustered up the courage to phone the office (please note this is a big deal for me, I have severe anxiety surrounding anything medical so even a phonecall to a hospital sets me off)
I speak with the nurse who told me someone had sent me a letter, they hadn't. She gave me a brief rundown of the results over the phone, she basically told me there was possible evidence of a previous bleed on my right frontal lobe and possibly somewhere else too, that was it. She did say there was nothing to worry about, but with how blaise they've been I'm not so sure. She just asked me where I had my last MRI many years ago so they could compare.
I've said before how I was diagnosed with a rare condition called lymphohemangiomas when I was 18 months old. This condition is so rare they were considering sending me to China as a child to see a specialist because there wasn't one in the UK. It's basically a condition where the lymph nodes swell and form blood/fluid filled cysts. Many people have them in their joints, or externally, mine are behind my eye and at the base of my skull.
This caused some issues when I was a kid, but I got the "all clear" when I was in my early teens and they simply said I'd likely "grow out of it". This never happened however it didn't really effect my life, so I put it on the back burner. After I first had a seizure when I was 15, my Mum did mention this but it was brushed off, every hospital visit it's brushed off, the epileptologist brushed it off. Can they not see that this is the likely cause of these seizures?! I've had no other head injury, this is the only viable explanation. It usually flares up when I have bacterial infections, which is when I'm more prone to seizures and what I was suffering with when I had my last grand mal, but apparently that isn't evidence enough.
I am SICK of being shunned by doctors, sure they may not know what my condition is, it's rare, I get it. BUT surely they could source someone who may be able to help me? It's been a long time since I was 2, I'm sure there are doctors in the UK now. Every single time I go to a doctor my anxiety is brought into it, I'm just being neurotic etc. They don't think that experiences with medical staff is what's caused this anxiety in the first place, huh? I honestly feel invisible whenever I go into an appointment, and I've come to the realisation that doctors certainly do not always know best.
This has however made me realise that there isn't much I'm going to be able to do about it, and at least I've more of an idea of what caused it.
Sorry for the rant but I needed to get it out there. I'm just frustrated and feeling a bit hopeless.
So I received a letter today, after having an EEG on the 31st May, and being told my results would be with me within two weeks.
The letter reads:
"The recent EEG of 31st May showed a normal background but with some transient slow and sharp activity over the right fronto-temporal leads and a single more generalised slow activity.
We will review as previously planned"
So, that means absolutely nothing to me, apart from I'm guessing the seizures start in the right frontal lobe. That's fine, except when I went for my initial appointment with my epileptologist, he did some "reaction tests" and diagnosed me on the spot with LEFT frontal lobe epilepsy. I thought that was odd without any tests.
So, in April I had an MRi, I've never received the results for them despite again being told they'd be two weeks. So upon receiving this letter I mustered up the courage to phone the office (please note this is a big deal for me, I have severe anxiety surrounding anything medical so even a phonecall to a hospital sets me off)
I speak with the nurse who told me someone had sent me a letter, they hadn't. She gave me a brief rundown of the results over the phone, she basically told me there was possible evidence of a previous bleed on my right frontal lobe and possibly somewhere else too, that was it. She did say there was nothing to worry about, but with how blaise they've been I'm not so sure. She just asked me where I had my last MRI many years ago so they could compare.
I've said before how I was diagnosed with a rare condition called lymphohemangiomas when I was 18 months old. This condition is so rare they were considering sending me to China as a child to see a specialist because there wasn't one in the UK. It's basically a condition where the lymph nodes swell and form blood/fluid filled cysts. Many people have them in their joints, or externally, mine are behind my eye and at the base of my skull.
This caused some issues when I was a kid, but I got the "all clear" when I was in my early teens and they simply said I'd likely "grow out of it". This never happened however it didn't really effect my life, so I put it on the back burner. After I first had a seizure when I was 15, my Mum did mention this but it was brushed off, every hospital visit it's brushed off, the epileptologist brushed it off. Can they not see that this is the likely cause of these seizures?! I've had no other head injury, this is the only viable explanation. It usually flares up when I have bacterial infections, which is when I'm more prone to seizures and what I was suffering with when I had my last grand mal, but apparently that isn't evidence enough.
I am SICK of being shunned by doctors, sure they may not know what my condition is, it's rare, I get it. BUT surely they could source someone who may be able to help me? It's been a long time since I was 2, I'm sure there are doctors in the UK now. Every single time I go to a doctor my anxiety is brought into it, I'm just being neurotic etc. They don't think that experiences with medical staff is what's caused this anxiety in the first place, huh? I honestly feel invisible whenever I go into an appointment, and I've come to the realisation that doctors certainly do not always know best.
This has however made me realise that there isn't much I'm going to be able to do about it, and at least I've more of an idea of what caused it.
Sorry for the rant but I needed to get it out there. I'm just frustrated and feeling a bit hopeless.
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