Hello all! My name is April and I am new to this group. I experienced a hemorrhagic stroke in January. An AVM was found in my left occipital lobe affecting my right central field of vision. My neurosurgeon rates my AVM between 2 and 3 on the Spetzler-Martin scale because it is shallow in the brain, around 2.5-3cm, but in area controlling my right field of vision. He is suggesting embolization followed by a craniotomy. I went and got an opinion of a radiology oncologist. He, too, is leaning towards embolization and craniotomy because it will be a cure. However, neither doctor ruled out gamma knife as a possible treatment. My concerns: with craniotomy I fear loosing more of my vision. My small vision loss from my stroke causes me to concentrate more when reading and driving. However, I am uncertain about results and/or side effects with gamma knife. At this point my radiology oncologist is getting the exact size of my AVM from my neurosurgeon in order to give me the most accurate statistics of efficacy. The size of 2.5-3 cm is the size of my hematoma, not the size of my AVM. While I understand everyone and every AVM is different, your thoughts and experiences will be much appreciated!
Hi April.
The problem with Gamma Knife is that you will not see any results till at least 3 years after it has been given. So in the 3 years you may suffer another bleed or even different complications. By doing the procedure you are potentially stopping any further risk to yourself.
Welcome to our community April! The craniotomy vs. gamma knife is a fairly common question/dilemma and one I went through. I ultimately went with gamma based on my neuro surgeon’s recommendation due to location of my AVM. It is left temporal, but on the inside edge. Ultimately it was less chance of side effects with gamma. The exact words were that he would have to “mash through a fair bit of brain” to get to it…Had it been easier to access I’m confident I would have gone craniotomy to get rid of it immediately.
I’m now 17 months post gamma knife and have my next appointment in November, time has flown by but I do have the risk of a re-bleed in my mind. Omar is right in the waiting. That is certainly something I would prefer to not experience again. Its a tough decision but one that you need to be comfortable with when considering all facts, pros and cons. Take Care, John.
Yes that is one of my concerns with gamma knife.
I am concerned that I will not have peace of mind with gamma knife, worrying of another bleed or it not being successful and then I need a craniotomy anyway. It is nice to get feedback, though! Thank you for your expressions! Are you experiencing any side affects from the gamma knife?
I’m not having significant side effects. I had some headaches about 6 to 8 months and found I was getting more tired than usual. Now I wouldn’t call it headaches that I’m taking medication for but have some odd feelings in the head. Like mild headaches, just feel different, this is since gamma but reducing as well. I do have some mild aphasia however I believe that is a side effect of the bleed and actually find that is still improving. So limited effects since gamma, most of mine are as a result of the bleed.
I’m not sure that answers your question? I’ll call them mild effects of gamma, the more severe were certainly from the bleed ad still subsiding. I sound like a politician for goodness sake! The best I can answer though. John.
I understand, it makes sense what you are saying.
April, with my AVM the only option wad Gamma Knife. But for your info, I really experienced little or no side affects from the Gamma Knife treatment, additionally at my sixth month checkup from the Gamma Knife treatment and subsequent MRI they could not find any trace of the AVM. I was totally amazed and thankful. So you consideration of Gamma Life treatment is very good. Talk more with your Radiation Oncologist and ask for everything he/she knows about the possible benefits of Gamma Knife against all other options.
Hi April,
Welcome to the site and this wonderful community!
I too have an AVM located deep in my left occipital lobe. It was originally 4cm and graded at a 4 on the on the Spetzler-Martin scale. It was a very rare aggressive case where I was getting brain damage pretreatment without a rupture or stroke or intervention. The flow was very high and the vessels around the AVM were unstable.
I had an embolisation 26/01/18 - no other options were given to me since a craniotomy would leave me in best case scenario with total right vision loss and waiting for GK was too risky and unlikely to be sucessessful. During my embolisation I had a small stroke causing me to lose most of right side vision perminetly in both eyes making me unable to drive - some upper right vision aswell as most of my central vision is intact.
They reduced it to less than 1cm and didn’t touch the remaining AVM which is deeply set in the area that controls my right central vision - basically all I have left in my right visual field.
I am awaiting another angiogram in August for the specialists to use to decide on the lowest risk solution. Since my AVM is smaller now and a lower bleed risk, they seem to be leaning towards GK with 60-70% predicted success and 5% risk of sight loss based on my post embolisation angiogram scans. Potentially I may have another embolisation instead of GK but it will be a higher risk op than my last embo. I can definently relate on the fear of sight loss and adapting to changed sight.
I would also ask your specialists opinions are on both GK and on this potential option: To first have the embolisation and then see how much this reduces the AVM and reduces the flow by. Then find out based on the now embolised AVM what the predicted risks and success rates are associated with gamma knife and craniotomy. Embolisation tends to be used as a pre-treatment to craniotomy and GK from what I have read - with faster results than GK and usually lower risk than craniotomy.
Gamma knife risks swelling and necrosis (healthy brain tissue damage). From what I’ve been told by my neuro-radioligist, the risks of these are believed to be lower when the AVM is smaller. The other cons as others have said is it takes longer to work and there is risk of a bleed whilst waiting until the AVM is totally treated. However GK from what I understand is less invasive and usually no more than a 1 night stay procedure and is usually used for AVMs that are in eloquent locations.
Best of wishes,
Corrine
@Corrine Thank you so much for your reply! How do you manage with your vision loss? Were you able to take some sort of physical therapy to help improve/function? Are you able to read? My husband and I run a small plumbing business of which I work in the office as well as homeschool my 13 and 8 year old kids. My neurosurgeon said worse case scenario with embolization and/or craniotomy I would loose my whole right field of vision.
That is wonderful to hear! What size was your AVM and where was it located?
My AVM waA located between the 3rd and 4th ventricle to deep for any other option but Gamma Knife. All other options were considered to risky (cause to much damage). My AVM was actually pretty small, so Gamma Knife. So continue to study all options, I’m sure you will come to the decision that best suites your needs. Best of luck, please let us know what your decision is.
Sincerely,
Les
Hi April,
I still have my central vision at the moment so I can read and see full faces, I have motion and depth perception. I have met a wonderful lady with total right field loss - she can read however she lost facial recognition, motion and depth perception so she cannot cross roads without aid. She is legally blind but has been able to study her batchelors and masters since losing her sight going onto her PHD and she works also.
Here is my visual field now:
Left eye
Right eye
This is my attempt at showing how I see things from my perspective, a photo I took from google images and have edited:
I manage okay, bump into people and things sometimes but now I able to leave the house independantly and travel independantly. I do feel overwhelmed when there are crowds though but I’ll adapt. I do get tired from too much visual stimulation but I have slowly been working my way up to watching full movies and reading for longer periods of time. I appreciate the vision I have now but I would be lying to you if I said i wasn’t desperate to keep my remaining vision.
The occupational therapist was confident id get on independently back at hospital when she saw how quickly I adapted to compensate for my visual field loss by looking around more and moving my head. I also rely more on motion memory and hearing. I don’t feel I need therapy at the moment but I know im at a point now where I don’t have much more vision to lose before independance would become more challenging.
Before the swelling went down my vision was like this:
Left eye
Right eye
Back then I couldnt see my own right hand feeding me, vision was considerably more limited. I managed to read still but had to shift my eyes alot more.
I definently think its a good idea to ask more about likelyhood of vision loss, and pros and cons of the differant options. It’s good your carefully considering pros and cons associated with each option.
Corrine
Hi April:
I had very few side effects from having Gamma Knife Radiation. I had headaches for about 3-4 days, I felt tired for a week or so and the halo they screwed into my head hurt a lot! However, my AVM is in my Cerebellum and is located in a position that would make surgery quite dangerous because it is located very close to my neck muscles. In a month, I will have my second dose of G.K. and will again have to wait another 3-years to see eradication of this monster. The first dose shrunk my AVM by 50%. It was initially 4cm when it ruptured, and now it’s about 2cm. The waiting is hell, but I’m happy to have had 50% improvement, so it has not been in vain. For me, Prayer & Patience has helped sustain me. Best of luck with whatever procedure you decide on.
@Sharon_D
Thank you for your expressions! Thats comforting to know you don’t have much side affects and you have seen 50% improvement. Do you have certain restrictions to avoid a re-bleed, such as no alcohol, no roller coasters, no high cardio, etc.?
I can relate with adapting to moving my eyes across in order to see more, feeling tired when over stimulated, crowds, etc. My loss of vision is same side but opposite. Instead of peripheral loss it is right central, the middle white spot in your field of vision tests is what I can’t see. Here are google images I’ve marked up to show what I see:
That is also comforting to hear of someone who lost that whole field of vision, considered legally blind, but can still function with everyday life. I have a lot to think about while I wait to find out the exact size of my AVM. Thank you for sharing all of this!
Looks like me and you together have a full visual field eh! Very interesting to see things from your perspective without the central vision - Thank you for sharing too 
Yes it’s good to know even if the “worst case scenario” happened, its certainly not the end of life or being able to do meaningful work ect. Definently is serious though so like you, once I’ve had my angiogram in August I will be ready to ask lots of questions regarding risks and pros and cons.
If you think of any more questions I’m happy to answer what I can!
Let us know how you get on,
Best of wishes,
Corrine
Hi April. I would suggest skipping any thoughts of Gamma Knife. I had mine done in 2012 with really bad long term effects. Not to mention my AVM has grown. If I could go back, I would have done more research. I truly wish you the best with whatever you choose is best for you and that everything turns out really well!!
@Breeze
Hi Breeze, thank you for your candor. I am really sorry to hear you are experiencing long term effects. It seems like those who have had 3-4 treatments experience way more side effects than those who have had just one dose.
Hi April. You’re welcome. I felt I needed to be completely honest with you as I only wish I would’ve found the group at the time of my diagnosis. I have only had one treatment, I just don’t feel comfortable with the doctors here or the procedure. The headaches have ruined my life and can’t even imagine what another would do.
I really hope you have wonderful doctors and lots of loving family and friends, you’re going to need their support! Best wishes to you x