Hi my avm was close to the optical nerve but was successfuly embolised and removed by surgery I hope it all turns out well
Hi Helena. My AVM was in my right occipital/parietal lobe. I didn't know I had it before the bleed. I ahd a series of embolizations followed by a craniotormy to remove the entire AVM. For me, another bleed was not just likely, but imminent, my doctors beleived. My neurosurgeon believes he could have successfully removed the AVM with miimal damage. Most of my deficits are the result of the bleed not the crani. I have left homonymous hemianopia, which most likely I would have had without the bleed and just surgery based on the location of the AVM. I have cognitive difficulties, balance problems, short-term memory loss, problems processing visual information (mostly numbers), anxiety, fatigue... The vision loss is challenging but I've learned to better compensate but I will most likely never drive again. Really it's all worth it to me just to know that the AVM is gone and I can't have another bleed. I wish you the best of luck with whichever treatement you choose. I recommend getting at least on other opinion, if not more. Just feel confident in your doctor(s), You want to choose one that is experienced with treating AVM.
Hi Helena, my husband had a 1.1 x 0.7 cm on his right parietal lobe. We choose Cyberknife which is alternatively known as Gamma Knife from Johns Hopkins for his treatment. He hasn't had any major side effects except for the migraines that he's been constantly getting weekly since the treatment, but nothing that Tylenol has been able to reduce. I guess each case is different, not sure how much radiation they are planning on treating you with, but with my husbands case, we were assured that there won't be any radiation damage with the dosage they treated him with. Good luck on your journey!
Hi Helena
My avm was same place/side as yours and was 5cm (or 5inches I forget but it was v large). I had it removed via four embolisations and then s craniotomy 5 years ago this June when I was 33. Mine hadn’t bled luckily but I was told it was at a high risk of bleeding due to size and my age. Apparently the risk of a bleed increases as we get older. I had to have it removed - no choice given - and it was too big for gk. I had headaches and a few other symptoms prior to it being removed but nothing huge. I was told not to get stressed or raise my blood pressure. No caffeine, alcohol etc. the craniotomy removed it fully and thankfully it’s gone now however I did have a SAH during the surgery as it was so long (15 hours). That ash cause severe weakness on my left side which when I woke up I couldn’t move at all or for some months. I still have it now although I’ve worked to improve it and it’s better than it was. Hope this helps. Lots of luck X
Thanks for your reply Charlie. I am glad that you were able to have your AVM treated.
I also suffer from fatigue and had 50% vision loss on the left side of both eyes from one of the embolisations but I think it was worth it all in all to have it removed - I could actually hear the blood pumping through it in my right ear.
Thanks Trish for your reply. I have seen multiple neurologists and neurosurgeons since I was 18 months old. The general consensus amongst my doctors has been to leave it alone.I like to be as informed as possible and keep my options open if there is ever an emerging need to do something.
Thanks for your reply Carla. My understanding is that The Gamma Knife and The CyberKnife are two different forms of radiation treatment. I am glad that your husband only has migraines after his radiation.
Thanks for your reply Erin. My understanding of bleeding is that the cumulative effect over the years is what causes the risk of bleeding to be high. Thanks for sharing the detailed information. I hope that your left-sided weakness improves. I know how frustrating it is to want your body to do a certain thing and it is not able to do it.
I hate that you suffer from fatigue and the vision loss Erin.
Hi Helena, you're welcome. From what we were told by Johns Hopkins is that Gamma Knife vs. Cyber Knife was the brand difference. Gamma Knife was the 'older brand' and everyone is mostly offering Cyber Knife now but you'll see hear staff saying Gamma Knife out of habit.
Here is a good website about the three types of radiation treatments available:
M.Hopkins medicine.org/health library/conditions/radiology/radio surgery_85,P08476. I do not know why it shows spaces but they are none in address.
I have a right parietal AVM. It was about 5-6 cm. Size, shape, and location were not conducive to having embolization or a craniotomy. I've had 4 Gamma Knife treatments (June 2011, December 2011, June 2012, June 2014). I have my next checkup in about a month.
I had 2 aneurysms associated with the AVM. I had a craniotomy to clip them in July 2011.
The summer I had the crani, I had some concentration issues, and I had fatigue for about a year. However, after my initial diagnosis and treatment plan, I've taken very little time off work since I was able to get most of my treatment during my summer breaks. I've had to cancel going to a few summer professional development workshops and a took a couple of days off when I had GK in December, but that's pretty much it.
I had migraines before treatment, so that's not new. I typically have migraines for a week or so after a GK treatment. Except for when things get really stressful, the migraines seem to be fewer and less severe than before treatment.
Thanks for your reply A Collins. I am glad that you are having fewer migraines. I appreciate the details.
Hi Helena,
Every avm is unique wherever it is located! There is therefore no standard answer to your questions.
The best way to find out exactly which area your avm is located and how treatment could possible result in any defects is by doing an fMRI.
In my case the avm is large > 5 cm, right parietal lobe, covering the whole sensorimotor area. My functional MR showed that it was/is very close or less than 1 mm from eloquent areas, controlling movements, arm and leg, left side. I had an hemorrhage during embolization in an attempt to make it small enough for radiation. Because of the complications I was temporarily paralysed. It also caused additional epilepsy.
Today, after rehabilitation, I am up and running!!
Unfortunately, in my case there is no treatment options left, neither surgery, embo, gamma or proton (because of the size and area) The outcome for me would most likely result in permanent left sided paralysis.
That said, all this can not be translated to your avm and treatment options!
From my personal experience, today I would consider the potential risk of serious complications with treatment (no return nerve damage in functional areas) versus the risk of a hemorrhage in the future, which can be less damaging and often (with rehabilitation) reversable.
Think twice is my advice, and get a fMRI before you make any final decision for what is the best option for you.Hanne
Thanks for your reply Hanne. It gives me something to think about. I thought that a fmri was only done if you were seriously thinking about brain surgery. I will talk to my neurologist and neurosurgeon about it. I thought that there would be similarities among AVMs that were similar. Each brain reacts differently and there appears to be no way of knowing what would occur until something actually happens. I believe that I will continue to just monitor my symptoms and the structure of the vessels by CTA and angiogram for possible aneurysms. I truly appreciate everyone’s replies and perspectives. I wish you all the best.
My AVM was "large" ... I had 2 Onyx Embolization treatments followed by surgical removal of the AVM. The only "defect" I suffered was from the significant bleed in April 2007. 3 years ago, my neurologist declared that there was no sign of any abnormality in my cranium. Like is good!
Thanks Lisa for your reply. I am glad that your treatment went well.
My wife have AVM in Right Parietal temporo occipital lobe, Dr says its big and its dimension is 4.7 x 2.9 x 3.3. She had radio surgery(cyberknife- very low dose) 2 yrs back at John Hopkins and last week follow up showed no change in size. There were no major side affects with the radio surgery, she was back to normal in a day
We were asked to wait until something happens(bleed) or radio surgery shows some affect on it. Dr thinks its too big and deep inside, so surgery will have more affects than what she have now. My wife occasionally gets some head aches and blurred vision. She had visual field on top left corners in both eyes.
Thanks for your reply Goud. I hate that the CyberKnife has not produced any changes. I have read that it might take up to 5 years to see changes depending on the AVMs characteristics. I wish your wife and you the best. Many hugs to both of you.