I have just joined the site after watching for a while. I have an AVM above my left eye, that has never caused me any issues. It was an accidental finding after having a bout of Vertigo. The biggest issue it has caused me is worry really.
Now that the procedure is booked in I'm not too worried about it, but I am a little apprehensive about the immediate aftermath, especially the scaring. I will be in hospital from the Wednesday to the Friday, but fully intend to go back to work the following week. So I have lots of questions about how the next few weeks are likely to be.
- I haven't told most of the people at work and also have to have quite a few face to face meetings, how visible is the scaring likely to be?
- Is it likely that I will feel up to going back to work three days after the GK procedure?
- Roughly how long did it take for you to feel normal again?
I have had an angiogram before, so I am guessing that will be the most unpleasant part.
Thanks in advance.
I think those questions are best answered by your doctor as different experiences may vary by person to person. My experience with Gamma Knife for my brain AVM has been that, as you said, the angio is the most unpleasant part (unpleasant but not painful...I dont remember it being painful at all). For the Gamma Knife itself they gave me some tranquilizer or something of the sort so I was not 100% present but I do remember that I just felt what I can describe as a really shallow warmth in the head. For me it was almost like getting an MRI with the difference that it laster longer. Of course each individual case is different and each experience may be different. Now, as to your questions: 1. The only scars that I had afterwards were the dots where the gamma knife helmet is attached (very small dots: two in the front and two in the back of the head I think). Those once again were not painful at all, but you could see tiny red dots. Those disappeared in about a week give or take...I really didnt pay much attention to them because they were so insignificant. 2. I had to take care of myself the day of the Gamma Knife (mainly because of the Angio I think). The very next day I was up and running (actually not quiet running...more like cruising on my wheelchair). 3. Refer to my answer to #2.
So I do think the angio is the most unpleasant part...bear in mind I was semi-concious though...
Hope this helps! Be sure to ask those EXACT questions to your doctors!
Best of luck!
Thank you very much Drey. I've been trying to decide on whether to tell people within my company, my bosses know and the guy who has to sit opposite me, but I've been quite quiet about it all really.
This is your decision to make so I cannot really make a recommendation as it is very personal...I can tell you what I did though...I only told those who I thought HAD to know (my boss and those who work directly with me a lot so that they can take prompt action if anything happens). I figured nobody else needed to know.
I had a lot of swelling around my eyes from the lidocaine they use when they put the frame on so I took a week off of work so that I could “look normal” again before going back to work. And also recooperate from the pain. (It’s a long day and it was hard for me). I would suggest telling your boss just to give them a heads up and allow you time to heal afterwards! Best of luck!
Thank you for your story Amanda, I haven't booked that much time off work, so perhaps I'll just have to do some half days. I figured getting back to my normal as soon as possible would be good for me, but I really don't know what to expect. I'm unsure if I have been too optimistic.
I would make sure you at least have 3-4 days just for the swelling. It can be pretty severe. My eyes barely opened. It took about 4 days for it to start going down. As far as scars… They just look like acne scars. I still have black dots. But if you didn’t know what they were you would never know. The biggest thing is definetly the swelling!
I've had the procedure and I feel fine. The frame fitting was incredibly intense, but bearable after 10 minutes, once the local anesthetic had taken effect. I didn't take a "chill pill" and the actual day was smooth. As expected the Angiogram and the lie down were the worst parts of the day.
In terms of the scaring, my left had forehead is a small scar. The right hand forehead wept on the day, but not by the next day and has a raised scab, which I am hoping will drop off soon - it's ugly more than anything else.
Best of luck to anyone else going through the same procedure. Happy to answer any questions about GammaKnife or the stay in Sheffield. I was very well looked after by both the ward staff and the Stereotactic department and had someone with me at every step of the way all day.