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AVM Survivors Network

Surgery

Hi guys,
Been offered gamma knife treatment for my avm but because of my extreme anxiety I cannot make a decision. I have also been offered a general anaesthetic as I don’t think I could go through with it otherwise. Has anyone else had a general or has words of encouragement. Love to hear from you. Jason.

Jason,

Did you have anxiety problems before you were diagnosed with the AVM? If not, and the anxiety is due to fear of the AVM causing a bleed, anything you could do that might alleviate the anxiety, such as doing the gamma knife, may well be the answer to your prayers. My panic attacks started immediately after my diagnosis. Anxiety lead to more seizures over the years. I couldn’t get a handle on it.

The AVM kept getting bigger over the years. At last, the risk of a bleed outweighed the risk of treatment, so I had 4 treatments with Onyx to embolize the blood vessels. Halfway through the treatment, the seizures started to decrease in frequency very rapidly. As the seizures disappeared,so did a lot of the anxiety. So, going through the treatment, however risky, served to make my life better. There were side effects, and I had a small bleed a couple of months after the last treatment. Without the treatment, I would have certainly had a catastrophic bleed.

Doing the treatment was the best decision I made, even with the small bleed and resulting aphasia.

Take the general, take the Valium before the treatment (or whatever meds will make you peaceful) and be thankful there is a treatment that will help eliminate or shrink the AVM. Good luck and Godspeed. Trust the treatment and the skill of the doctors who will heal you.

Yvonne

Hi Yvonne, Good question.

My anxiety certainly got worse after being diagnosed. Although saying that I was firstly diagnosed in my early twenties and was certainly a more outgoing confident man than I am today. I suffered 3 seizures within 6mths of each other then I had a scan and they found out I had a avm. I was in hospital several weeks later having opted for embolisation. They said it was a dangerous procedure because of the location of my avm and because they had to embolism seven blood vessels with each one could cause a stroke, blindness, being paralysed etc.

I just wanted rid of the damm thing. Do not want time to think of changing my mind. To cut a long story short. They had to stop the op as they said it was much to dangerous to carry on and too many risks where involved. I was so dissapointed as I had built my hopes up only for them to be shattered. So I carried on with my anti epilepsy meds and tried to put it all behind me, easier said than done as I carried on having grandmal seizures over the years.

So as you can imagine it would always raise its ugliest head and I felt like I was back to square one again. Eventually 26yrs later I had gamma knife. I wish I had had the courage to have had it done years ago. I’ve wasted so much time and anxiety and yes fear have got the better of me.

Going for my first year mri in May this year. Consultant said don’t get your hopes up as there is likely to be no or little change.

Thanks for your post and kind words.

Kind regards,

Jason