this is because I am scheduled for radio surgery on April 30. My avm is located deep in the brain where surgery is not an option and an embolization was attempted. It was decided it was in my best interest to do the radio surgery.
I am struggling with all this stuff. I believe radio surgery is quite effective, however, it just takes time. The doctors say my AVM is very small (it has bled once). hopefully the small size means it will be dealt with/obilterated much sooner(?)
Hi Jim,
Small is better when it comes to GK, well that’s what all the doctors say. My doctor doesn’t recommend GK for me because my avm is too large, it’s 4cm. They believe it is better to get mine with surgery because it is not deep in the brain, but it is in the back so it is in an unusual place. Messing with my brain is scary, I’m struggling too, I’m also being positive and praying everyday that I get back to myself after surgery as fast as humanly possible so I can live the life that I’m meant to live.
I don’t worry as much as I use to, before making the decision to have it taken care of, I was more worried. A lot of people helped me here. I think that your doctors are making the best decision for you according to everything that doctors have said to me and what I have read. GK is the way to go for your situation. I wanted GK because it is less invasive, but it is not recommended for me. Try and relax, I know that it is hard, but it is the best thing for us.
Hello Ameenah. Thanks taking the time to respond to my message. I have good days and bad days with this avmm thing-I guess we all do. I guess I feel like I am running out of patience(!?) sometimes. I find this website very helpful. Thanks again.
I hope you are doing well since your surgery.I would like to hear how everything went with your radiosurgery. I am on deck for embolization & radiosurgery next month. Mine is not small and it is deep in the brain, which has made it inoperable until recently. Any words on your experience would be great (weakness, subsequent seizures, bleeding, etc).
I have been treated for a small AVM deep in the brain. It was discovered after a number of MRIs and angiograms. (I have some double vision (among other things) as a result of the avm. This is why they continued to look further). Anyway, this all happened over 2 years ago.
In my case, surgery was not an option. They then tried to embolize it, but felt it was too risky. Embolization - as you know - is much more immediate than radio surgery, which is why they tried this first. Because the embolization was not a success, radio surgery was the only other option.
Personally, I found radio surgery is really incredible. It is non invasive, reducing the chances of complications. The only problem is that it takes a very long time before they know if it has worked. I spent 12hrs in the hospital the day of the radio surgery. Most of the time was spent getting the necessary images to calculate the radio surgery. I had an angiogram, CT scan and an MRI before the radio surgery-which took only about 20min.
I had the surgery using the Novalis machine here in Calgary, Alberta, Canada. Check it out at http://www.albertaradiosurgery.ca/ All the doctors have been awesome throughout this whole process.
You may hear stories about the Halo you have to wear but its not that big of a deal. Doctors realize the potential anxiety of patients regarding this stuff and you should get the proper freezing-kind of like going to the dentist.
This may be the long answer, but I got very anxious about the whole process for nothing. Having said that, I still struggle with anxiety, however it has nothing to do with the radio surgery but more to do with living with an avm.
Thanks Jim for talking about the halo, I was very nervous about that, I told the doctor that everyone says it hurts so bad. The doctor tends to agree with you, you just have to have the right thing for the pain.
I know what you mean about good days and bad days. They can be good or bad physically or mentally.
Physically speaking, very hot and humid or rainy days are not good for me.
Hi Jim, I just found this webside, is great, my situation is similar to yours, I did not have any option for surgery but i did have the GK las summer, all went great, I just remember little of pain for the Halo, but other than that the pain was less than when it bleed, However a year have past and I am not feeling 100% myself, the neurosurgeon says every situation and body respond different, but my numbness and loss of control in my right side are getting rellly bad with the pass of the days, so today againts my wishes I started steroids for 2 weeks first to see how it goes, I would love to hear about your daily symptoms, it is a nervebreaker but I would like to hear from others to see how are doing with the gk, as you may feel sometimes, I am scare, I am sorry for my writing and grammar, I am writing with my left is easier but look horrible… good luck!
I too feel a little numbness on the right side (of my torso). This is a little frustrating but I have just learned to live with it. I am mostly frustrated with my slight double vision. (There are portions of my vision where that were really affected by the AVM). I understand the GK takes time to do its thing-so patience is important. I have also been told that the human body is incredibly resilient, so that, over time, it can heal itself to some degree-regardless of the situation.
I believe we all have to be positive-but there are times when this can be very difficult-you just have to hang in there. Do what you can with what you have.
Jim, thank you for taking the time to answer, tthis site is incredible, i feel I’m alone anymore, however, 3rd day in steroids and the only simptom so far is sleeping problems, so hopefully, that would be the only one, once again good luck …
Jim said:
Hello Gina,
I too feel a little numbness on the right side (of my torso). This is a little frustrating but I have just learned to live with it. I am mostly frustrated with my slight double vision. (There are portions of my vision where that were really affected by the AVM). I understand the GK takes time to do its thing-so patience is important. I have also been told that the human body is incredibly resilient, so that, over time, it can heal itself to some degree-regardless of the situation.
I believe we all have to be positive-but there are times when this can be very difficult-you just have to hang in there. Do what you can with what you have.
Did you have this surgery and how did it come out?
I am also interested if radio surgery is a good option. I have 3 cm but is in a deep part of my brain which is also in an eloquent area. Regular surery is not an option. I have never had a bleed and yet with this surgery I am told there is a risk of bleed. I also never have seizures so not sure if I should have this procedure or not. UCLA would be where it would most likely be done. Also if there is chance it will still be there and possibly bleed and cause strokes or seizures. Not sure if I should just leave it and hope it never bleeds. Please pray I make the right decision. Any info. / success stories with radio surgery ? Without bleeds, seizures or strokes?