Brain surgery recovery period / Cavernoma

Are you still looking for answers to your questions? because i had the same thing last year?? 

yes it'll be months before the NHS actually get round to giving me the op.. if you wouldn't mind telling me about you're op n how everything went it would really help.

do you have an email address? be easier as im only a guest on here and i read email everyday, might forget to come on here :)

Hi, i'm just recovering from the same operation with similar side effects.
In March this year the left side of my face started going numb - around my cheek and mouth. It happened a number of times each day and i left this for a couple of months - In May i went to my GP who referred me and after a number of MRI scans / EEG etc i was diagnosed with a mild form of epilepsy secondary to a cavernoma - sounds like what you have?
Started on medication, had to stop driving immediately and was referred to a surgeon and had the surgery at the end of August. I was terrified and didn't want to know too much information before hand.
So to answer your questions:
Recovery - i had the operation on a Tuesday, I was sat up and eating on the Wednesday although still tired, catheter removed Thursday morning and had a shower and washed my hair (it was bliss) and was discharged on the Saturday. Felt scared being discharged as my husband, as lovely as he is knows nothing about brain surgery and at least on the ward you are surrounded by experts BUT they were at the end of the phone and i did phone them.

I felt 'normal' pretty much straight away but did / do get tired although i am now building my strength by going out walking.

i get a bit disorientated walking (didn't before op) which i have been told is normal and is part of the healing while the scarring settles down. It's not too bad and i just take things slowly.

I don't have a dent.The scar is big but 8 weeks down my hair has started to grow around so it's not as obvious, another month or so and it should be covered.
Things going bad - i was terrified - it's a big thing. i had every confidence in my surgeon and he is confident that the operation went well and too his plan. Mine was also on the surface so easy to get to.

I did ask my surgeon on a number of occasions if i would be brain damaged but he kept telling me that the cavernoma is on the mobility part of my brain ie. effecting my face and possibly my arm.

I was told that once cut out that it is then sorted. It won't grow back and is like a birth mark

i'm not soft but i kept getting this overwhelming feeling of wanting to cry and my eyes kept leaking - weird for me. This continued after the operation, which i'm putting down to relief but is slowly stopping.

Driving - still not driving. I was initially told 12 months since your last seizure but my surgeon said 3 months after surgery as the seizures where secondary so i have applied for my licence again to see what happens. I'm hoping it's the 3 months!

I'm really fine now. had my post op MRI this week and was a bit apprehensive but it went well. Due to see the surgeon in a week to see how the operation has gone etc...

You do know you can get a free bus pass?? speak to your local council. If you suffer from seizures / epilepsy you can apply for a NOW card. I use mine most days. I have also applied for a disabled rail card which discounts mine and a friends travel and finally, your prescriptions will also be free - get applying.

Good luck

Hi I'm going through the same thing. My surgery is scheduled for Dec. 4. I'm beyond terrified. I'm nervous about recovery and possible complications.

Hi, thanks for replying! just wondering how long you had to wait to get the op? both of you, whats youre waiting period? ive had this for 3 yers now nd got told the op was last resort but pills arent working, what the hell is up with that! ive had no doctors recomend i get it yet apointment is on the 28th so ill find out then. and let me know about the driving when you find out please!

 

thanks!

Can't answer all your questions but to make you feel better, my son just had this surgery in London, he is completely with it, remembers, knows who he is, can speak, see, seems like his old self just has to recover and rest, can't work for 3 months. They got ALL the cavernoma, said it won't come back, the surgery was done in the IMRI operating theatre and took 12 hours. Keep your spirits up, those Neurosurgeons are a breed of their own and are amazing and fantastic. Hope this helps.

Thanks, im glad you people are replying to this cos i had never even heard of it untill i got it, felt as if i had nobody to give me any info about it. hopefully my appointment in 2 weeks goes well and they say i can have the surgery. Hope you're son gets better soon!

Hi my son also is coming closer to his surgery too.It sounds as if your cavenoma is probably the same place as his,visited to surgeon yesterday,he says its a low risk operation,and cavenoma do not burst they bleed but you dont die from the bleed, infact when they bleed they dont bleed very much at all.My son was told he would be in hospital for about four days and not allowed to drive for 3 months after the operation,hope all goes well for you.

hi, thanks for replying, i was at the doctors 2 weeks ago, and i was told if it did bleed i would most likely collapse and have a high risk of dying. something i got told 2 weeks ago when discussing the surgery however that i was never told before was that there is a 1-2 % chance i can end up paralysed all down my right side!? has anyone els been told this was a risk? and thanks hope youre sons gets it sorted asap! we're a right unlucky bunch arent we haha.

Hey! I'm actually having my surgery in 5 hours. And I can not sleep at all. I have a cavernoma as well and it has been growing. I am 15 years old and it was Christmas yesterday. I am taking this in a positive way but it is very hard for me. I am a sophomore on the varsity team and I really want to get better so I can play. Season starts soon. I am sooo scared. I can't sleep at all. The surgery is supposed to be 5-6 hours and they wanted to get this out ASAP so I have to go to the ICU and at the cottage hospital. All the nurses say that he is a wonderful doctor and that he would get me through this well. I'm scared about my hair and not being the same after this. It feels good to vent out on this because my friends don't quite understand. Yes it is tough. They had also said I would have to go into rehab mine is on the right side. Hopefully nothing bad happens. Taking this one step at a time. I have a lot of support and prayers coming my way. Except i just feel soo sick of its I have had it all my life and it never gave me problems till 7 months ago than a couple months earlier i had gotten a concussion which made it worse. So yes. I just thought I would search up this things side effects and such and it led me here. I will update you guys on what happens on my recovery. My mothers alarm just went off I stayed up all night yikes ill just sleep in the hospital.

thank you for commenting on this, this is my post but I cba logging in, hope you're op went well!!

reply when youre all recovered no rush, were you told about a risk of being paralyzed? maybe its just cos its on my left side or my brain, and I was told an 11 hour op so think yourself lucky haha

 

my email is    

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if you wana talk to someone going thru it as well jst mail me :) plus it would be nice to have some info on how it went

 

take care.

I am having surgery in march. Any information on your surgery and what to expect would be wonderful! Thank you. Kate

Hi Kate, Im the one who asked the questions to start with :) yeah Im still in the middle of finding out about the surgery when/if they give me it. Just waiting on a letter telling me whats happening, what are you're symptoms if you dont mind me asking? keep checking back here now and then to see if there are any replys, i'll post on here when I know more :)