I have a date!!

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Amoobaa

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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 :p

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 :p 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:
 
Big (((hugs))) to you! I am so sad for you that it took a bleed in your brain before someone finally listened to you! I will be thinking of you on your surgery day and during your recovery. Best wishes to you!
 
And here I was ready to cheer on your date with a new guy... :)

I will be rooting for you on the 13th! It must feel terrific to finally understand what's been happening your whole life...and to look forward to a well-behaved brain. I hope you have a terrific Christmas, and a very happy New Year/New Brain!
 
You'll be in my thoughts that day and I hope everything goes well!
Even though it took too long for something to get done I'm glad something is happening now and hopefully things will improve from here on in!
 
Good luck with the surgery & recovery
 
Thank you everyone :) i'm looking forward to writing surgery updates :) its nice to have a place to come to where I can share these things and learn so much from everyone else at the same time. If anyone has any surgery advice, let me know!! And when I'm able to get online post-op I'll be more than happy to share any info that others might find useful :D

Also, out of interest.. I've heard from a few people that seeing a neurologist that specialises in epilepsy is way more helpful than seeing a general neurologist. I'm in the uk and someone said its worth trying to seek an epileptologist (spelling?!) does anyone have any experience with this? I'm keen to get some good support once I'm post-op. the reason being that I have done a little bit of reading (as advised to do by my neurosurgeon) and now I seem to know more than any of the specialists I've spoken to.. Which kinda worries me, cos they often dismiss stuff that feels pretty important to me.

Anyway.. just a thought..

Thanks again everyone :banana:
 
So glad you'll finally have this taken care of.

I had brain surgery for a tumor a few years ago and, though I was told I'd stay in the hospital 3-4 days, they kept me for 10. But I was never in any pain, actually felt pretty well :)

Hugs and well wishes! :rose:
 
Thank you :) yeah they estimated 7-10 days for me.. So im hoping to be out a similar time to when you were discharged :D

Unfortunately I seem to have developed a cold!! I'm so worried they'll cancel it! I'm drinking honey, fresh ginger and lemon with hot water... But when I researched online I see lots of people are told not to take any vitamin c or ibuprofen just prior to their surgery?!? What's that all about? Because I've been doing that! Eek!

My cold isn't bad. Just a bit of a sore throat. Sniffles... Slight cough every now and then. I dont even want to think about having to wait for another date!

I'm due to get the call today to confirm bed availability.. So if there's a bed I'm going in.. But of course I'll have to be honest when I get there, if they ask if I've got a cold or feel unwell. Ggggrrrrrr!

Hope you guys are well :banana:
 
Hello and congrats on your date. really hope all goes well and will say a prayer for you.. don't worry all will go well and you will be fine stay strong

Joe :)
 
...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:

And we're glad you're part of cwe! Will be thinking of you!
 
Also, out of interest.. I've heard from a few people that seeing a neurologist that specialises in epilepsy is way more helpful than seeing a general neurologist. I'm in the uk and someone said its worth trying to seek an epileptologist (spelling?!) does anyone have any experience with this?

I love my epileptologist and dealing with an actual epilepsy center. I highly encourage seeing one!
 
the neurologist that i see is also an epileptologist, very cool dr and knows his stuff i would rcommend you see/find one if you can they seem to know how to get your seizures under conrol and keep them controlled.. they're far better to handle epilepsy then a gp:rock:
 
Unfortunately I seem to have developed a cold!! I'm so worried they'll cancel it!
I'm sorry to say this & hope I am wrong but if you have any sign of a cold no matter how small it is then there is a good chance the surgeons will not operate & will have to postpone the surgery.
I think that it can be to risky to put a patient under the anesthetic if they are sick (eg - cold).
 
Oh no! What a time to catch cold. I hope you are well enough to go ahead with surgery. It would be nerve wracking to have to wait for another time. But I guess your doctors know best about these things. About the ibuprofen, I think that it is related to aspirin, and like aspirin, it can cause blood thinning. I don't have any ideas about vit c. Anyway, take care and good luck!
 
Travelbug is right -- ibuprofen can cause blood thinning, so they don't want you to have it in your system before surgery. Vitamin C supplements can have a diuretic effect -- and diuretics can cause a decrease in blood volume which could in turn cause complications during surgery. A minor concern is that C supplements can sometimes cause an upset stomach on the day of the surgery, particularly if you are fasting the night before.

Hope you feel better soon!
 
Hi all, just to say the surgery went well- it's been a couple of weeks now. To be honest, I think it's been worse for the people around me than it has for me. Physical Pain I can do, but watching other people not coping with the mental pain it triggers in them- that's the hardest bit. I hope you're all doing ok. They say 4-6 weeks rest and a year for full recovery. I'm happy with the results so far, just wish I could make this whole thing easier for my parents. I really, really do x
 
I'm really glad to hear things are going well for you. :) I wish you the best of luck in the coming weeks and months!!
 
There you are Amoobaa, thinking of others and especially your folks...as a parent, I can tell you - just reading your kind/sweet words (to your parents) touches my heart.

"I'm happy with the results so far", gosh, oh thank goodness....may it bring you seizure freedom.

You will be in thoughts and prayers as you recover as will your parents...
 
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