Hi everyone
On January 5th I have a brain aneurysm ruptured which my aneurysm was clipped and everything went well I am recovering very well however my recent angiogram shows an Avm that could rupture and my new doctor has mention another surgery. I am terrified of the outcome and to think that I have to start all over again gets me so depressed.
Ohh Elsie, I completely understand and empathise with your situation. I’ve needed to ‘start all over again’ a few times. Now I say a few times, but none of them have been the same in recovery time nor symptoms, so trying to compare is impossible. Short of the (no pun intended, but) mind blowing headaches, each has had it’s own unique recovery.
This may sound cold, but that is not my intent. As patients it is impossible for us to look at these things clinically, we always put emotions into the equations, it’s natural. But if we can think a bit outside of ourselves I’ve found it a bit easier to consider.
For example, what are the options? Operate or not? Let’s face it, they don’t recommend surgery unless they seriously consider it as necessary.
What are the risks of operating? Your surgeon should discuss these with you prior and will vary depending on location and severity.
What are the risks of not operating? A rupture. Results? Bad to very bad.
There really, honestly, is no ‘upside’ to any scenario but the reality is we have very little to no control over any of it. From here it’s all up to the dr’s and that loss of control was/is something I have a real battle with every time. If someone’s in control of me, it’s me. But when it comes to surgery I have to relinquish that control and I HATE IT, but I have to accept it, I have no choice in the matter. And for me, personally, that is one of my biggest stumbling blocks.
My only suggestion here is do not be crossing that bridge until you have surgery confirmed as necessary, but once confirmed it truly is all outside of your control.
And that is the cold, hard reality of it all.
Merl from the Moderator Support Team
I no the feeling. After my first surgery thought everything was going to be fine but kept having small seizures. The doctors did more MRI scans and found another AVM from the first ruptured bleed. So ended up having 3 more surgeries done. It was a long recovery but I’ve gone over 10 years without having a seizure.
Elsie,
So I want to encourage you that an AVM is not the same as an aneurysm and there are different treatment options for an AVM, if you are lucky.
A craniotomy (open surgery) is the most obvious but I can guess you’ve had that sort of surgery and that’s why you’re bothered about it.
Another route is an embolization, using glue or coils, accessed by inserting a very fine tube in the same way as an angiogram.
The final way people are treated for an AVM is by radiosurgery … zapping it with radiation from outside.
In general, it is the size, complexity and location of the AVM that drives how many choices you have but unless your doctor is clear that only a craniotomy is appropriate, I’d say ask about an embolization or radiotherapy. Sometimes, neurosurgeons specialise a bit too much and you may do well to get an opinion from an interventional radiologist if the neuro is not familiar with those options.
Hoping you all the best,
Richard
Thank you so much for the great advice!
Thank you for the advice!
wow…the best of luck to you.