Michael, thank you so much for the reply, and I’m so sorry that you still have the AVM, albeit it sounds like it is vastly reduced in size. Mine is also 3.5cm so it’s encouraging to hear of your progress. I imagine that a second dose of GKS will easily finish yours off, and with such a small target area you will hopefully have a very low incremental radiation risk. All the best and do please keep us informed of your progress.
My next scan is scheduled for Nov 23, 2 years after my last scan and 4.5 years after treatment. Having seen little progress at the 2.5 year scan I just have to hope for a similar trajectory to yours!
I go in today for my 2nd gamma knife procedure. Overall I feel fine, but it is 3:30am and I’m not sleeping so I’m on Wikipedia reading about Cobalt ionization, AVMs, the development of gamma knife in Sweden. My alarm will wake me at 5:30 so I better get back to bed.
All the best for your GK today. I hope it will be less stressful this time around knowing what is entailed!
I haven’t had a scan since Nov21, and my neuro has now scheduled one for Nov 23, which will be a two year gap. Sheffield had suggested annual monitoring but I guess the NHS is very clogged up and at least by Nov I will have had a full 4.5 years since treatment so hopefully will see some progress. Meanwhile I’m sitting here by the pool in 20C in Southern Portugal with the family so I really can’t complain! Life is good.
Let us know how you get on today and what your treating radiologist says about your chance of success. Seems like it is almost a done deal!
Best regards,
Jonny
How did your gamma knife go? I hope it went well and you are feeling OK .
I hope you don’t mind me asking you some questions for when you are feeling better.
How long do they expect it to take to get rid of this time? What are the risks involved until it is gone? I’m so scared of having to go through the first 18months again.
You are so brave and you will feel amazing when it has finally gone. Well done you.
Take care. Gill.
I feel fine. I still have a bit of a headache, 5 days out, but only when I put pressure on my head. If I’m just walking, sitting, etc, it’s fine. I think that’s from the compression of the four pins. The top of my head is still tingly, but again, only when I touch it. I was out shoveling snow today.
I was on the gamma knife table for 60 minutes, at the hospital for 8.5 hours. They tried to do the cranial angiogram through my radial artery on my right wrist, but apparently my arteries are unlike 98% of the people, so they had to stop mid-procedure and flip to the femoral artery. I’ll have to read the medical records to see what the deal is. Something about the angle of the artery where they could not drive the catheter to the aorta then up the carotid artery.
I asked the surgeon if I was a greater risk until the artery has a chance to heal. He said I’m actually more safe than had I not done it because the gamma knife creates a sticky type substance in the artery which decreases the chance of a bleed. I imagine the same situation exists for you.
I go back to the doctor 4 weeks after the surgery, then he wants to do an MRI four months from the procedure. I know it takes months to years to heal.
This was a 6 mm AVM. I asked if a bleed risk was less if the AVM was small, but he said, “no, small ones are more likely to bleed.” I don’t know why.
Again, this is by my cerebellum and brainstem, so not a good place to mess around, which is why I went with gamma knife, but I think regardless of the location, also given hindsight, I’d do gamma knife again.
Hi Michael, I’m so pleased the gamma knife went well and that you’re feeling OK. It must have been scary when they couldn’t get through the wrist though. Please becareful shovelling snow now!
That’s interesting about being safer having gamma knife.
I don’t know how long to give it before I go for gamma knife again. It’s been nearly 5 years and if its still there at 5 years should I wait for 6 years and risk it bleeding or get on with it and have it done again with all the risks involved. I just can’t decide as I don’t know if anyone’s has actually gone after 5 years.
Anyway you’ve been such an amazing help thank you and I’m so excited for you that yours will soon be gone. Take care. Gill
Hey Michael, how are things? I hope you are recovered from your GK treatment.
Gill, they tend to re-treat at 4-5 years as the radiation effect has largely happened after this time. It may just need a small treatment to finish it off. All depends what your surgeon says.
Hi Indigo,
Thanks for your message. My neurosurgeon in London said he has seen gk take up to 6 years so I may try to wait as I’m really not looking forward to doing it all again especially the angiogram as I’ll need 2, one to check it’s gone and if not another one before gk!! I find them so scary ! I’m also dreading the risk of seizures for 18months after gk.
I too hope you are OK Michael. Gill.
