I have an AVM which ruptured in August and experienced an acute hemorrhage in the left posterior cingulate/left occipital lobe. As a result, I suffer from short term memory loss, some visual disturbances and spatial disorientation. I am having gamma knife surgery this week and am concerned about another bleed as a result of the surgery. Though it is listed as a potential risk, I have not seen it reported here as a side effect that anyone has listed. I realize that it is possible to have another bleed after the surgery because it can take several years for the AVM to be obliterated from gamma knife surgery. But does the gamma knife itself cause further risk of bleeds?
Hi Kvonhahn: Welcome to the group! I’ve had 2 rounds of Gamma Knife Radiation (GKR) for the AM in my Cerebellum, which ruptured 6 years ago. I had some of the same symptoms as you: vision problems, short term memory loss, dizziness, vertigo and balance problems (which I still have to a degree). I cannot handle flashing lights and I cannot be in a dark space. I have not had another bleed and I have never had a seizure. I am not on any medication, except for Tylenol when needed. All-in-all, I’m dam good! I can’t dance anymore because of the dizziness, but I rock out in my chair! I am truly blessed because I know how bad it could be. Gamma Knife is a long 3-year process. It can’t be rushed. You just have to sit back, be patient and let it slowly “marinate” for 3- years. So far GKR has greatly reduced the size of my AVM. Should I decide to have that 3rd and final treatment, it may be completely obliterated. But for now, I’m good with where God has put me. I wish you P&P (Prayer & Patience).
I can’t think of a reason for a bleed from the op; only as you say that it takes a long time to actually heal up.
I had gamma knife in 2016. My understanding is the risk post gamma does not elevate compared to untreated. The ratios are a little different if you have had a bleed or not in respect to risk. As time passes the risk is decreased as the flow is lessened and continues to decrease until obliteration is achieved. Again, I’m no expert but that was my understanding. The time lag between treatment, or treatments, and the hopeful obliteration is also hugely variable and dependant on many factors. I was 27 months with one treatment, which is quite good. Mine was quite small. Take care, John.
I have read many studies and also have the Radiosurgical Atlas (I forget the correct name but it is quite a tome!). I did a lot of research prior to my gamma knife, and took some opinions and have not read or heard anywhere that SRS increases the risk of a bleed. Bleeding was not listed as a risk factor of my SRS treatment. I have seen that one study proposed that bleed risks MAY decrease after SRS but that study was not considered entirely reliable, so it’s probably fair to say that there is no reliable evidence of either an increased or decreased risk. Of course, you have the time elapsed between the SRS and obliteration, but that is not an increase in risk.
Hope this helps
I’m so glad you asked this question because my neurologist is communicating with a top neurologist at the National (QC) as to whether my Gamma Knife is something we can go ahead with, and I’m awaiting further info as well as a date for the treatment. The issue is that my two AVMs are ‘eloquent’ (lovely word that disguises the meaning!) - they are very close to important parts of my brain…
So I think everyone will have different results that are specific to their particular AVMs…as I did read on this site that somebody had the other side of there brain negatively affected by their treatment…making me a bit nervous…but I also realise that we are all unique! Our decisions are hard ones to make…good luck x
Thank you Jonny. I would not be worrying about the Gamma knife except there seem to be a lot of folk on this group who had a negative experience after having this treatment - it just makes me wonder if I should be reading this site because to seems to make any decision making much harder…and I wonder if, perhaps, not having the gamma knife might be a better option.
I found this site to be by turns really helpful and really frightening when I first joined. It is definitely something to consider how much you read when it starts to not help. Ideally, we are all here to help but I completely understand that it can cut both ways. Just use us as you find best
Thank you all for your responses!
I did go in for my GKS as planned on October 30th at Swedish Cherry Hill in Seattle. They placed the head frame on my head and did another CT scan and an angiogram. After the angiogram, the radio- oncology surgeon, Dr. Loiselle called off the the GK surgery. This is the same hospital and radio-oncology surgeon and neurosurgeon (Dr. Patel) I had when I had the bleed in August and they identified the AVM with a CT scan and angiogram.
The radio-oncologist immediately scheduled for me to have a more detailed MRI and an appointment with Dr. Henson, the neuro-oncologist and brain tumor specialist. It was a nerve wracking 5 days, but when I returned they all agreed that though rare, they believe my AVM has disappeared through spontaneous regression. They think that there is a chance I may have seizures from any scarring, though I haven’t to date. They also say it may reform. But at this point, I am AVM free and do not need to return for 6 months. Words cannot express how fortunate I feel. I am sharing this outcome to give others hope for healthy outcomes.
If you read the literature, there are less than 100 documented cases of spontaneous regressions of AVMs worldwide. Typically they occur in diffuse AVMs with a single draining vein, both features that mine had. The remaining symptoms I have are as a result of the stroke: short term memory loss, spatial disorientation and some visual sensitivities to bright lights. I can now focus on rehab and living my life. I am very grateful. I have not seen other posts relating to spontaneous regression of AVMs.
That is fabulous! I’m sure we have a couple of other members who’ve had their AVM disappear, though I’m not sure I remember who. Good luck! Will they offer you occasional scans to check that all still looks ok?
Very best wishes,
Thanks, Richard. My first scan is in 6 months and we will see if anything has changed for future treatment. I am grateful for these 6 months now.
Main thing is to put it behind you.
Great news Kristin, certainly hoping for the best in 6 months! The brain is a confusing beast at the best of times. Take Care, John.