Hey everyone 
I finally have a new date for surgery :rock:
As many others here have commented.. Everything often feels so up in the air a lot of the time... So much trial and error.. So I hope you are all having good days.. and as for me and my particular situation, it's good to finally have a date to anchor myself to.
I am having a craniotomy to remove a mass in my right temporal lobe. I have a brain Cavernoma (abnormal mass of blood vessels) and am on keppra for temporal lobe epilepsy. They said they believe I've been having seizures all my life without realising what was happening to me. In my other posts I have talked about my various diagnoses.. Ranging from daydreaming to partial deafness
It wasn't until I had an MRI that I realised there might be something up.. In fact the MRI wasn't even for anything major.. I was only having it because I was complaining of sharp stabbing pains and numb patches of skin.
When the neuro found the Cavernoma he told me to carry on as normal as it wasnt a oroblem, and later ignored my calls when I developed a headache a few months after the scan. I was in the process of getting a new referral to see a new neuro (a neuro that would actually see me, rather than ignore my calls for well over three weeks!!) but the day before I was due to have a telephone consultation with my GP re: new referral, I had a brain bleed. Nice! Thanks mr neuro!!
Anyway, to cut a long story short... Wen i collapsed I was taken by ambulance to a and e.. And luckily I had my scan in my pocket (because I was convinced something was up and considering the neuro kept telling me he didnt need to see me (he thought i was just being anxious for no good reason) i wanted it with me just in case!) when they saw the scan in a and e they realised I hadn't been drinking or taking recreations drugs.. And got me into a scanner very quickly when I came round I found out I'd had a nasty seizure.. And so my E story began.
In hindsight I now realise I've been having partial complex seizures my whole life. That was hard for me to accept at first because I had always been told I was a daydreamer and I needed to try harder.. Or that I wasn't listening. Isn't it incredible how much we can dismiss our own behaviour? I even remember times that I would be walking with my friends in the park and I would suddenly feel like I was on another planet, so dreamy and my whole stomach felt whooooooooshed like when you're in a lift or a roller coaster! And then I would have to sit on a bench and let it pass. Or the times I would start talking weirdly at school and they had to take me to lie down in the first aid room because I couldn't see properly or stand up and I kept saying, 'I feel so weird, it feels like I'm dreaming, like none of this is real'.
I've been doing a lot of thinking and it's only very recently that I've realised all these things were related.. I never realised! I guess if you've had something since you were a toddler, it's just normal to you.. You don't really think about it. It wasn't till the bleed that I had a seizure people recognised.
Anyway, I digress the reason I am writing this new post is because I wanted to tell you guys that I finally have a surgery date. They gave me one when I was hospitalised but then they messed up a load of admin stuff and cancelled it.. Then they messed up more stuff and couldn't give me a new date, then they sent me someone else's blood results!!!!!! And now finally, I have a new date.. I will be admitted on my mums birthday, doh! (12th December) and the op will happen 13th December.
I have no idea what my recovery will be like, because we can't tell the future, but I'm hoping to be out very quickly, within 10 days and hopefully back home before Christmas!!
I will of course get back online whenever i can to see how you all are and to share all your ups and downs and your wealth of information, strength and support.
I also want to thank you all for creating such a beautiful and supportive forum. I am very grateful to be a part of it.
Hope everyone is having a good day and looking forward to Christmas
Amoobaa :banana:
I finally have a new date for surgery :rock:As many others here have commented.. Everything often feels so up in the air a lot of the time... So much trial and error.. So I hope you are all having good days.. and as for me and my particular situation, it's good to finally have a date to anchor myself to.
I am having a craniotomy to remove a mass in my right temporal lobe. I have a brain Cavernoma (abnormal mass of blood vessels) and am on keppra for temporal lobe epilepsy. They said they believe I've been having seizures all my life without realising what was happening to me. In my other posts I have talked about my various diagnoses.. Ranging from daydreaming to partial deafness
It wasn't until I had an MRI that I realised there might be something up.. In fact the MRI wasn't even for anything major.. I was only having it because I was complaining of sharp stabbing pains and numb patches of skin.
When the neuro found the Cavernoma he told me to carry on as normal as it wasnt a oroblem, and later ignored my calls when I developed a headache a few months after the scan. I was in the process of getting a new referral to see a new neuro (a neuro that would actually see me, rather than ignore my calls for well over three weeks!!) but the day before I was due to have a telephone consultation with my GP re: new referral, I had a brain bleed. Nice! Thanks mr neuro!!
Anyway, to cut a long story short... Wen i collapsed I was taken by ambulance to a and e.. And luckily I had my scan in my pocket (because I was convinced something was up and considering the neuro kept telling me he didnt need to see me (he thought i was just being anxious for no good reason) i wanted it with me just in case!) when they saw the scan in a and e they realised I hadn't been drinking or taking recreations drugs.. And got me into a scanner very quickly
when I came round I found out I'd had a nasty seizure.. And so my E story began.In hindsight I now realise I've been having partial complex seizures my whole life. That was hard for me to accept at first because I had always been told I was a daydreamer and I needed to try harder.. Or that I wasn't listening. Isn't it incredible how much we can dismiss our own behaviour? I even remember times that I would be walking with my friends in the park and I would suddenly feel like I was on another planet, so dreamy and my whole stomach felt whooooooooshed like when you're in a lift or a roller coaster! And then I would have to sit on a bench and let it pass. Or the times I would start talking weirdly at school and they had to take me to lie down in the first aid room because I couldn't see properly or stand up and I kept saying, 'I feel so weird, it feels like I'm dreaming, like none of this is real'.
I've been doing a lot of thinking and it's only very recently that I've realised all these things were related.. I never realised! I guess if you've had something since you were a toddler, it's just normal to you.. You don't really think about it. It wasn't till the bleed that I had a seizure people recognised.
Anyway, I digress
the reason I am writing this new post is because I wanted to tell you guys that I finally have a surgery date. They gave me one when I was hospitalised but then they messed up a load of admin stuff and cancelled it.. Then they messed up more stuff and couldn't give me a new date, then they sent me someone else's blood results!!!!!! And now finally, I have a new date.. I will be admitted on my mums birthday, doh! (12th December) and the op will happen 13th December.I have no idea what my recovery will be like, because we can't tell the future, but I'm hoping to be out very quickly, within 10 days and hopefully back home before Christmas!!
I will of course get back online whenever i can to see how you all are and to share all your ups and downs
and your wealth of information, strength and support.I also want to thank you all for creating such a beautiful and supportive forum. I am very grateful to be a part of it.
Hope everyone is having a good day and looking forward to Christmas
Amoobaa :banana:
