I go for my surgery (craniotomy) on Thursday for my unruptered right frontal lobe 2.5cm AVM.
Is there anything anyone wish they knew before they had surgery about the experience or anything they feel it would be useful for me to know? Even for the recovery period?
Also anything I should take in with me in my hospital bag apart from essentials?
I feel fairly calm at the moment which is surprising myself! But I am suddenly thinking - i dont really know a whole lot about the surgery…
I just want it gone- i am concerned how i will feel once I wake up after them going into my brain…
I am so worried to say bye to my children on the morning of surgery i sometimes wonder if i should have gone for gamma knife!
I haven’t found anyone that’s has their treatment in Southampton UK yet… anyone?
It sounds like you’re keeping it together pretty well! Keep it up! I know @Rich2 is in Southampton and I think he has had a number of rounds of treatment (many years ago) but don’t know if those were in Southampton or further afield.
Hi natalie, yes hi richard, i had a Craniotomy many years ago; too remove pressure on a bleed. many, many years ago. I already had a proper stroke/avm, apparently my head swelled like a balloon.
So i would have different reasons for mine - can i ask, why you must have a Craniotomy when it is unruptered? They feel theres too much pressure?
They gave me three options to renove my AVM either gamma, surgery or do nothing…
The gamma scares me as you have to wait 3 years to find out if it has gone and in that time that can rupture… if I got side effects from the treatment I would panic thinking I am having a stroke- I have three children so I need to be here for them…
Leaving it was not an option for me…
So it was either I took smaller risk but over 2 to 3 years or I took all my risk upfront on one day. I chose to take all my risk up front as my life would be on hold for years with gamma xxx
Which Doctor please? Ive had a review with Mr Diederik Bulters the other day, very nice chat and certainly knows his stuff.
Ive had GK twice as my bleed was way, way too deep. My first one was 2004, second 2008. Since then, ive had 90% removed. I had no problems, altho my GK was in london.
Indeed you just have to way the risks, and make your best judgment from what the doctors say. From both Cranioromy and GK - i had no real problems at all. My Craniotomy in southampton was from Mr Owen Sparrow, altho hes retired now (2 years ago). The Craniotomy i had made no damage - just my bleed left me without speech. But i had no problems from Craniotomy at all. Just a rather mental scar that i can show off to people!
I am having Bulters- so i do hope he knows his stuff Haha!!
I am confident with him an he’s very patient with me… he’s also said he will make my scar as small as possible as i love my hair!!!
What has he suggested for your next step? I assume your speech is back? Xx
Nothing for me now - he said that the small bumps i have are almost nothing. ie, no dead specific areas through the vein anymore. So he said theres no point going any further, so im happy with that. My speech, comes and goes - i can blag through it. I work in office, i can manage to get through it (graphic/web designer). Can never record numbers on the phone tho lol I managed to get…85%. But each bleed is unique, so they are always different in variation!
My hair/scar, just grows over it. So it just disappeared…used to have a crew cut, as said it was one cool scar always better to be on the side, not across the line i suppose. I have a “normal” hair, maybe 1 inch over, u dont see the scar at all.
i wish you the very best. The southampton team have a great set up.
I had my operation on to remove an AVM on my right frontal lobe.
I had a seven hour operation. I spent a few hours in recovery and a night for observation only in ICU.
I was discharged 5 days later, and i have had no issues whats so ever.
This is thebest choice by you to have to operation. I have young children, ( both under 5), and this was for them.
Nothing more than your essentials is needed.
Being calm is the best way, there is nothing to worry about.
If you want you can pm me and I can give you a break down of everything.
Hiya Natalie,
I have been wondering how you have been getting on. Everything is gonna be fine. Before you know it you’ll be awake seeing your beautiful children avm free. Don’t worry about how your gonna feel after surgery I was in no pain at all. First thing I remembered was the time 15.40 to be exact looking at the clock thinking yes I can still use my brain, then I moved my left hand as this was a possible deficit and then I asked the nurse where my partner was. I even texted my sister and mum so they knew I was fine. Dont be alarmed if you hear strange noises in your head this is all normal, the only way I can explain it is like having Rice Krispies inside your head going snap crackle and pop lol, but it’s painless. I wish you all the best for Thursday and look forward to hearing you say everything went good and that you are now avm free!!! Don’t hesitate to message if your worried about any weird symptoms, I’m sure your gonna have a smooth recovery. Just get plenty of rest and enjoy everyone pampering you !!! Xx
Hey! @Amanda13
Thank you for replying- pops in your head- i havent heard that before, doesn’t sound too pleasant Haha!
On your profile it says you had gamma, how come you had gamma and surgery? Where was your AVM? Xxx
I was not allowed to walk for 2 days. My surgery was on a Thursday, I spentThursday night in ICU, then on Sat was move to a high monitoring ward. It was on Saturday afternoon I took my first steps unaided.
Your face will swell from all the fluid release, but it will go down and go away. You will also get a black eye, but again, that will all go away.
The only uncomfortable part for me was undergoing another Cerebral Angiogram on the Monday.
I don’t like the Angiogram. It is not painful. Just an uncomfortable experience.
Don’t be worried, this is the start of a new life. you will be fine, but also grateful for life.
I had a major bleed on my second stroke - as said that apparently went like a balloon, after 4 days they decided i had to release pressure - craniotomy. So i have that curvey scar, right across from ear to top of forehead.
Then after that, to remove the AVM, my option was only GK as the AVM was way, way too deep.
Agree the Angiogram is not that enjoyable. But they numb the procedure now. Will be done soon.
Hello Natalie,
I’m guessing you’re recovering now and hopefully on the ward recovering. A few things, rest and patience and a good playlist or podcasts. Something you can shut your eyes and rest to that distracts you from the sounds of the ward. If these sounds get too much or your neighbours are a bit intense see if you can move beds, there is no harm in asking, also some patients with different or similar conditions with different treatments will be recovering near you or have different needs that can be a bit tough to listen to. Everyone has different pain thresholds so try to be kind to them and kind to yourself. If you are in pain yourself, say, don’t try to be a hero and tough it out. If there is one time in life where you can say I need a bit more than that, this is the time. Always make sure you get food and a supply of food, you won’t always feel like eating at meal times guaranteed- make sure you make your meal requests or tell a relative what you would have if you’re not awake. I did a bit of reading before and took ginger nuts (biscuits - gluten free) with me and 100% virgin coconut oil in sachets, I still carry this. If I feel a bit weird this seems to help out, the science of it is amino acids related. The ginger nuts are the anti sickness qualities of ginger- and a bit of sugar. Coffee also, make sure if you like it you get your dose. Helps with many things. Also got meals, if you like it salmon and avocados , again amino acids and bananas all good brain foods!! And above all plenty of water!! Staying hydrated keeps one kind of headache at least at bay! I hope you’re doing well,
Laura
Depending on the hospital procedures they will also ask you three questions when they do checks:
Who are you
Date of birth
The day that day
Or
Where you are
This gets pretty annoying, but it’s all for you, no one is trying to catch you out it’s all about the care and careing process and guiding you through your recovery. I heard a lot of people getting frustrated by these questions. Just do it and do your best and stay calm. All things will be well and all manner of things will be well.
i sometimes wonder if i should have gone for gamma knife!
always better to be on the side, not across the line i suppose. I have a “normal” hair, maybe 1 inch over, u dont see the scar at all.