Hi Miss Lisa here,
I am a new member. I found out I had an AVM 6 months after having a brain bleed in my cerebellum. II spent 3 days in the hospital last August after being home sick for 3 days unable to get out of bed. They admitted me for low sodium. After being discharged, I contacted my primary doctor and requested an MRI. That’s when the brain bleed was discovered. Then in early Feb found out it was an AVM in mid cerebellum. I can’t say I’d been feeling well before all this happened. I’ve had headaches with weather changes most of my life, fibromyalgia pain, digestive issues. For the most part, I eat whole foods (not processed), avoid sugar and caffeine. I haven’t cut out gluten. I continue to work from home but even that is difficult at times as I suffer from migraines. As a result of my brain bleed, I have issues with my balance (walking) and some motion sickness at times. My AVM is small. My doctor recommended radiosurgery. I believe it’s the gamma knife. Supposed to be the one time treatment with the helmet. I had a hard time enduring the angiogram. The catheter hurt my arm and all the flashing lights were hard to handle. I’m sensitive to light, temperature changes, chemicals, foods. Just having reading glasses on causes a tension headache. Right now I have dry eyes. With the humidity and hot weather, I’ve been getting headaches or migraines about every day. I have migraine prescription meds which help. I’ve held off on the radiosurgery. I don’t think I want to have it. Has anyone decided not to have this treatment? With 2-4% chance of a re-bleed vs side effects which may happen I think I’d rather not. I have an online meeting with my doctor tomorrow. I figure it doesn’t hurt to get more info. I’m at my one year anniversary. I’d appreciate feedback on pros and cons of this treatment. Thanks for the support and for making the website available.
Hi Miss Lisa here,
Welcome Miss Lisa and hopefully we can pass along some of our experiences that you can consider in your decision making process. First I’ll say it is difficult to make the right decision, and we only know if it is right after the fact. I like to say I was completely at peace with my decision to have gamma knife, it turned out to be the right one for me. This was about two years later when I had no further bleed and really limited side effects.
You will see many of us encourage a second opinion, no two of us are the same, but we do share a lot of things in common. The recommendation for me was to get my AVM removed, lower risk with gamma than craniotomy due to location and access to the AVM, my neuro folks recommended I not leave it be, it was close to a very problematic(eloquent) area should further bleeds occur. The thought was the treatment was far less risk than a second bleed.
Make sure you do your research, get the opinions and make a decision you are comfortable with, and hopefully we can help you. A ton of sharing people with vast experience on our site and a wide variety of experiences. Take Care, John.
Thank you so much for your response and for putting this website out there. I hope to here from you all soon!
Hi Lisa! I don’t know how much my experience correlates with your situation but I’ll give you some background and how my medical team proceeded. I had an AVM hemorrhage in the spring of 2019. 6 months later during my cranioplasty (prosthetic implant surgery) they discovered another AVM on the other side of my head, consequently embolized 95-98%. About a year to 18 months after that, the original malformation was growing back.
I opted for gamma knife to re-shut it down.
I tried to return to work the day after and I was sent home , presumably I looked unwell. After I got good rest, the only real side effect I have experienced was how fatigued I was immediately after i think.
Thanks for sharing your experience. I was sick but didn’t remember having a headache. I was at my computer working and felt weak. I had vomiting and diarrhea. I just thought I was sick. I was one week away from flying to Boston after not seeing family and friends for 3 years. Needless to say that got cancelled. The hospital didn’t know I had the brain bleed. We all thought maybe it was something I ate and caused my sodium level to drop. My speech was slurred but I thought it was a reaction to citrus drink I had for electrolytes. I never drink those sugary drinks or artificial chemicals. One of the doctors did a spot check for a stroke and said I looked okay Crazy stuff! I gets bouts of fatigue now that sometimes come on sudden. I’m lucky because I have a low stress job working from home so if I need to rest it not much of a problem. My co-workers are understanding. Like you say, we are all different. I honestly think I was under so much stress between my mother in law being ill and her family doing everything to keep her alive, plus some family issues on my side, getting ready for my long awaited trip and planning work coverage while on vacation. Too much for my brain apparently! :Life doesn’t always go as you plan. I spoke with the neurosurgeon this morning and think I might go for it. I’m hoping to get more feedback from this group.
Hi Miss Lisa,
I had Gamma Knife procedure in London (Mr Kitchen) two years ago Sep 2020 for AVM in Cerebellum right side unruptured so no brain bleed for me. Basically I worked on the percentages of having a bleed against the risk % of having a bleed due to the treatment, for me it was worth the small risk of having the treatment. I admit the angiogram and procedure is uncomfortable, the worse bit is having the head frame fitted but I had local anesthetic in scalp which helps. So on the day I had head frame fitted then had MRI then had angiogram then a break of about two hours while they calculated the dose and time period for treatment then I had the gamma knife treatment for approx 55 mins(boring, listening to radio in the machine which isn’t as claustrophobic as MRI scanner as its just the head that sits in the machine. Anyway for me the upshot now is my AVM not showing on MRI anymore which is quite early as they didn’t expect results until 4 years and its only been two years so far. Anyway I need to have angiogram to confirm which I am waiting for. My symptoms I still have and in fact the medics say probably not directly related to AVM so we are still looking for cause of my symptoms - we think now problem with blood flow in head - venous stenosis or similar. ANyway my advise or opinion is get as much info from the medics as possible and gauge the risks of leaving it alone versus have gamma knife. If my AVM gone then my risk of bleeding is normal. Good luck and I hope make the right decision for you
Imo you’re fortunate to have an option. I never knew i had an Avm until it ruptured.
Do you want to be in hospital for a year and relearn how to walk and talk?
Eventually I had surgery to remove my Avm and hate the scars but 30 years later I don’t have hospital appointments so it was successfully treated . If your doc suggests treatment I’d take it so that you can move on with life.
Sadly being in the Avm club is bad for many of us.
I can relate with an AVM @ Cerebellum as that was my case. Although I had both options GK and Craniotomy, I had a Craniotomy given that 3 small aneurysms were found in my grade 3 AVM. I do not wish to convey a recommendation, I will say that at the time of my diagnosis I was 44 years. I was advised by Cleveland Clinic that AVMs in lower part of the brain have been found to bleed at a 6% probability, and that it is an accumulative probability through time. So at 44 years I was very glad not to have bleed.
The good news is you have options that you should evaluate.
All the best
Welcome to the family & sorry to hear about your diagnosis.
One thing that we can’t do here is decide what’s best for anyone… these are tough times & only the individual experiencing this can decide… but we can offer our thoughts and experiences through our own AVM struggles.
I noticed you mentioned the low percentage rate of a bleed but not sure if you have been made aware that number increases annually from what I’ve been told by medical experts… so 1-2% this year means 2-4% next year and so on.
I suffered a bleed 1 month after finding out I had an AVM and had no option but to have surgery… I was given the 1-2% chance and didn’t even last a month… not saying this will happen to you but just want to make you aware… the medical experts are the best ppl to determine what options are best for you and second, third opinions are options for you also.
Please keep in mind you survived a brain bleed this time but there’s never any guarantee with the next one and may come out much worse… sorry if I’ve worried you I just felt it’s important to know… God bless!