Hi all, it’s been a while since I last came on the forum, January 23 I think, I was waiting my craniotomy to remove my AVM, since then the ops been cancelled a further 3 times. So my first surgery was supposed to be August 22, here we are and I’ve just been given a further date 14th August 23! I just hope they keep this one.
I feel as if I have a ticking time bomb in my head and I want the operation before I become another emergency. I had a bleed in 2019 in my brain and I was lucky to survive that. A second one I might be pushing my luck… the consultant said it’s not a matter of if, only when I have a further bleed?
It’s around 3 to 6 months recovery and I have my own business, you can imagine the planning to keep it all going whilst I’m off.
Anyway if you’re waiting an operation I hope it comes sooner and they keep the date for you . Stay safe and keep smiling. Paul
I am unsure what an AVM is, although I live in the US and we often use different terminology for the same things. Evidently, I am prone to aneurysms…I currently have two being watched on a regular basis, and have had webbing put on one, and another that bled, but fixed itself (Who knew that could happen?). Those are the brain aneurysms, but I have also had them elsewhere in my Aortic System. I only mention to let you know I have also had some brain surgeries, and may be having more. I can’t imagine being put off. It is hard enough accepting and preparing oneself, to have to do it over and over again is truly heartbreaking. I have only been put off once, for an emergency, and only for short hours (less than 24). I have not had a brain surgery that has taken so long to recover from. They have been able to go through my wrist for both, although I did get the free shave treatment, just in case they needed to go through above the thigh. LOL. I am so glad they don’t pre-prep my head in case they decide to go that route!!!
I hope that your craniotomy will go just as well as my surgeries have gone, and that you heal very quickly from it. I did read what it was. I will also tell you this is what they would have done if they had been unable to go through an artery to my aneurysms. My own Neurosurgeon told me this is the easiest way for them to get to the right place to repair with less chance of running into issues, such as poor placement of stents or webbing that would cause further surgery, so I am very happy to share that with you. I hope the info helps you in some way. I will keep you in my prayers.
Thank you so much for your kind words, AVM or arteriovenous malformation is an entanglement of veins and arteries, you are born with them mostly, but quite rare to have one in the brain, like an aneurism they can weaken and bleed but the only way to deal with them fully is going through the skull, it’s micro surgery so unable to do using a stent through the arm, leg or groin, for some they can be treated like this but not mine as it’s around 20mm diameter, luckily it’s in the right frontal lobe and is reasonably easy access? If you know what you’re doing of course .
I’m hoping they can manage yours for you so that you have no further episodes. They offered me radiotherapy where they blast the AVM with rays but this has risks and can take 3 years to find out if it’s worked and all that time you can have another bleed, then if it’s not worked they need to operate anyway. I’d rather take the risk of the op to start with.
Thank you for your prayers it means a lot. I’ll send you healing too.
Please keep in touch to let us know how you are doing, pre- and post- surgery. I did look up AVM as well and am very happy to report most people have 100 percent recovery. That is great news, but still doesn’t make the stress any less beforehand. I will also tell you, being a little bald in this heat has some advantages, although my hair has grown back now, much thicker than before it all fell out. I do try to look for the good parts and find it helps, but I would never expect one to be constantly upbeat…that is just an avoidance issue. Sounds like you have done your homework to make the best choices. I don’t know what you rely on for strength…for me it is faith. and sometimes anger, lol. Whatever works for you, I hope you hold it close to you.
Yes the success rate is very good and I have no doubt I will recover in good time, I’m ex forces do my hairs always short thankfully but the bald bit will be different . My strength comes from my beliefs too, also I study Reiki healing which helps but my main strength is my wonderful family.
I’m a little concerned only I’ve just come down with a chest infection and I’m just hoping it clears up quickly as it will delay my op otherwise.
I’ve had a lot of issues over the past 15 years including not being able to walk between 2010 /2014 plus lots more but in this time I invented a material called Sealwise, www.sealwise.co.uk I’ve built a business around it since, this has also been a great driver for me too, I believe that stars shine brightest in the darkest times you just have to look for them.
That’s very kind of you, Southmead hospital Bristol UK have just called and said the same and as long as I don’t need steroids I should be fine as long as it clears quickly. X
I hope your op. happens as soon as possible / ie this time round
I was in Southmead for 3 weeks after my stroke, last September
You’ve been through a lot… not walking for 4 years is a big deal
You’re a brave soul. You deserve a lucky break
Thank you Roland, I believe in just keep getting back up, it gets hard sometimes but I’m hoping the op happens so I can move forward. I hope you’re keeping well, 3 weeks in SM, I’ve done that myself and it’s a long 3 weeks.
Well at last I had my brain operation, in fact I ended up having 2 but they got all the AVM out. They removed a much bigger part of my skull than I thought with around 80 stitches, which are being removed today. I came through the operations really well and although I’m absolutely shattered and fatigued at the moment I’m expecting a speedy recovery over the next few months.
that scar is going to be a very impressive conversation starter - if that’s a thing
Youve clearly been through a lot. It’s also wonderful to hear about these sorts of services available through the NHS. Such a large complex organisation makes it easy to find examples where the service struggles. It’s also uplifting to hear of and see examples where it must be equal to anywhere in the world?
Wonderful news! Here is to a speedy and full recovery!
If it were just a hairstyle, I am certain there would be many NFL and NBA players trying to sport a new trend. My sister did not quite understand my sense of humor when I told her I was going to get a wedding dress with a cropped top for Halloween, and sit in my rolling walker at the door to pass out candy to the kids. Frankenstein’s bride, with all the abdominal scars, or I suppose I could have just had my grandson color between all the scars with different colored markers and been a patchwork quilt.
You look awesome, and I hope you will be feeling as well as you look soon!
Many thanks to everyone, I did offer to hire myself out for Halloween to my children but they thought I’d scare the grandchildren too much🤣. I’ve had my stitches out so looking a bit more normal now, it’s just the pain inside my head now. I finally understand it’s a slow recovery and lots of rest.
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. My strength comes from my beliefs too, also I study Reiki healing which helps but my main strength is my wonderful family.
