I incidentally discivered my AVM 6 months ago, and i finally got courage to schedule craniotomy. It ia due next tuesday or wednesday, and as you can all imagine im pretty scared and my anxiousness is going through the roof.
My AVM is located in right temporal lobe - Sylvian fissure, size around 3x4.5cm. My neurosurgeon told me i will most likely need about 1.5-2 years to fully recover from surgery, and he mentions speech difficulties and left side mobility as likely to be temporarily affected.
That sounds super scary, especially since i have a toddler (as a single mom) waiting for me at home.
Has anyone had similar situation, how your recovery went? Any advice of how to prepare for everything mentally
Anything you share will be highly appreciated
(please pardon my english, it is not my native language)
Your English is perfect, by the way
We all recognise any kind of brain surgery as among the most frightening prospect any of us might face. I had an embolisation procedure done back in 2017 and you sign a piece of paper reflecting on that something like a 5% chance of “death or something bad happening” I think it said. Well, there’s nothing unfrightening about that. Very frightening.
However, I got through nicely. I think the main thing is that fear of the unknown. I’m not good with pain and I was bothered a lot about that but the drugs were very good and certainly an embolisation was both more impactful than I imagined it would be and yet more easy to get through than I imagined it would be. Overall, mine was good. It took about 2 years for me to feel back to normal, so I think giving you that feedback at the start is very honest.
Are you having a combination of embolisation and craniotomy? I know your profile was talking about embolisation earlier in the year.
I’ve no doubt at all that a craniotomy is a big deal but there are many here who have gone through the same and come out the other side well.
Sending you the most remarkable Christmas wishes!
Thank you for your wishes
Yes you are right, firstly i was supposed to go for embo. But i wanted to be sure that im choosing the right option (and doctor) so i went for second opinion. Then i found my NS, who is supposed to be best NS for treating AVMs in Serbia. And he told me that embo is a bad idea for my AVM since it is very high-flow.
Honestly, i went through hell in my decision proces, since basically every doctor said different things. So frustrating and unnerving.
Every specialist likes to praise his way of surgery… Making it even harder to decide
In the end i went for cranio option. But ofc its not comforting to realise by reading posts at this forum and elswere on the internet that most of the craniotomies are done after or in some kind of combination with embolization.
So hard to find similar story
I think it is fair to say that craniotomies are often done standalone. And if the high flow nature of your AVM makes it difficult to do a pre-emptive embolisation, then it makes sense not to increase your risk by doing both. The only reason for doing a pre-emptive embolisation is to reduce the overall risk to you, not increase it. So I think you can be comfortable that the advice you’ve been given hangs together.
Hi @Mylen, welcome to the community.
I would say your decision process is spot on with many of our own. Like you, I learned about my un ruptured AVM incidentally, and very thankful for that.
Going through learning our condition, treatment options and recovery is stressful, tiresome, and frankly scary. We find bravery first out of necessity, and later, I think out of conviction.
I had craniotomy on a grade 2-3 AVM (never had a grade definition) June 2022. Cerebellum, mid right region. My surgery was performed @ Cleveland Clinic Ohio, I live in Guatemala. Surgery went according to plans, and as my Dr said, “when you wake up you won’t have it anymore, recovery will be tough, but in time you will get there”.
My recovery was tough, but not in a horrible way. It just took time, and a lot of physical therapy. Because it was in the cerebellum, I lost all of my equilibrium and balance. 3-4 months after surgery I begun to feel much better. And I would say it took more months to feel almost there, I think it is always an ongoing process.
I would say that having options is always important, and at some point we take the best decision we can with what Dr we feel comfortable with. And then we trust that decision, that process and hope and pray for the best.
I wish the very best and I am here if you have any questions.
I like those words your doctor told you, i will try to remember them.
You sound good and that you are recovering well. That is always amazing to hear. I hope you get back to your 100%, if you are not already.
How long did you wait for surgery? How did you feel prior to it? My NS tells me i mustnt be in a state of fear because hormonal imbalance caused by anxiety is not good thing for recovery process and can add to a risk of developing epilepsy. I really dont want that, but i find it hard not to be afraid. Or simply impossible. I started trembling in my sleep from fear again…
Once the decision was made with surgery, about 1 week. But I went several months prior to that with diagnosis.
If I may suggest, once a decision with treatment is made, there is not much we as patients can do about it. Waiting is had of course. I took long walks, sometimes with my wife, sometimes by my self.
At the time I read an article about David Goggins, who is a former navy seal and a Ultra Marathoner. It resonated with me that you can prepare the best you can, and days before a race you just go on autopilot mindset. Meaning in my case, I just tried to block all negative thoughts by jumping to a new thought as quick as possible. And tried to be positive about outcomes.
You are already very brave, remember that.
I decided to try to keep busy with a project. An empty mind soon fills with worry, so keeping busy – ideally with something you need to actually think about – I think is a good idea.
And know that they will look after you in hospital: nobody expects people to be ok with brain surgery, so they will simply lead you through the day. I think my wife was worse than me because she had the whole day in hospital with nothing to do. I was under anaesthetic for hours so got through everything much easier than her.
The other way I looked upon hospital was like a warm beach holiday (ok, I know I’m crazy) but it is never cold in hospital and I’d be lying around all day with people bringing me food and drink. A few days where there was nothing to do but get looked after royally with some excellent drugs! (Not that I usually try drugs on holiday!)
Keep busy. It’s definitely not an easy time and the anticipation is just as likely to be worse than the reality.
Very best wishes,
Hi @Mylen !
I had my craniotomy done in July this year, my AVF was located on the left side. The first 3 weeks post surgery were awful due to bad headache and fatigue. It is almost 5 months now since cranio and I feel much much better. I have headaches from time to time but they are tolerable, I still can’t feel the incision area, it’s still numb, I have some stabbing pain ocassionally. But overall I’m feeling fine. I suggest to get a lot of pillows ))) upon return back home, in my case I had problems trying to find the better position to sleep and asked my husband to buy like 4-5 additional pillows to feel comfortable. You will be just fine, stay positive, listen to healing music. It is scary but it is necessary, it has to be removed as it is like a bomb in your head.
I wish you all the best, text me if you want to know more or you have any questions!
Advice ahead of an op? This may sound negative but I think it can help to assume the worst, write care plans for your kid, plan what would happen to them and you so that you can concentrate on your recovery.
It’s going to take all your energy and reserves to get through this which other people have managed.
Welcome @Mylen to the family… I had my right frontal AVM removed in 2011 & they did tell me many things that could be affected due to surgery, but luckily it was limited & I pretty much got through it all ok.
It’s not an easy surgery to go through & recovery can be slow, but at the end of the day you can be AVM free & slowly get life back to normal.
Please keep us posted on your journey to recovery… God bless!