My name is Latarsha. I haven’t posted in a while but that’s because I have been trying to figure out how to deal with my diagnosis. I was diagnosed on 9-20-17 and that date is forever etched in my memory. Sometimes I believe that I would be better off if I had never had the MRI done (my AVM was an incidental finding). I had a consultation with a neuroradiologist shortly after my diagnosis but I declined treatment at that time. I have finally decided to move forward with treatment and have another consultation with a neurosurgeon later this month. The scariest part about my AVM is that it is located in my right occipital lobe and there is a high probability that I may lose a part of my vision if I have brain surgery. I drive a lot as a part of my job and to think that I may lose my ability to provide for my family breaks my heart. Is there anyone who can offer me advice? Anyone have an occipital lobe AVM treated and vision remains intact? I have absolutely no symptoms and I am terrified that should I treat this AVM, I will develop some sort of permanent deficit. Thank you all for taking the time to read my post.
I’m sure I’ve read of people having an op in occipital lobes and not losing vision, but I am equally sure I’ve read of people who have lost some vision. So I think it depends on how big or invasive your AVM is that indicates the risk that some sight may be affected.
Mine is in my dura mater, over my occipital area and I had like migraine aura after my op – scintillating scotomas – but they went away. In the UK, having a dural arteriovenous fistula (my type of AVM) not treated means you can’t drive anyway, so it was definitely worth me getting mine done.
I have some symptoms again, so I am starting the process of going back to see the neuro this week. Rather expect to be banned from driving again until re-treated.
Getting expert advice is the right thing to do.
Very best wishes
I had an occipital / parietal AVM that ruptured and it caused a bunch of problems that almost killed me; yes having the surgery may affect your vision but I think if you do nothing and it ruptures you can have more problems than just some vision loss but you have to do what you’re most comfortable with. everybody’s situation is different so you have to make the choices based on the information from your doctors and do what you think is best for you and your life.
I have loss of my left peripheral vision which makes it so I cannot drive anymore and yes the loss of Independence is probably the hardest thingfor me to deal with, but I’m still alive and with my family and even though things are difficult I’m happy to be alive!
I completely understand those worries. It was a big fear of mine too when I was diagnosed with a left occipital AVM, fear of losing sight.
I have met a fellow occipital lobe AVMer @Shimarlie who didn’t lose sight and still drives, she did have temporary sight loss but it all came back after a few months post embo. I know another occipital AVMer who did lose sight in one eye, I am not sure whether it was due to AVM or treatment (he has undergone many treatments of embolisation and gamma knife) but he still is able to drive here in the UK since his sight in the other eye is perfectly intact.
I have unfortunately a very rare, aggressive “1 in a million AVM” case so needed to undergo an unusually intensive embolisation (rather than the standard several stage reduction process) and did lose alot of right side vision in both eyes and cannot drive. But regardless of this, I have no regrets, surgery in my case saved my life since I was a high fatal rupture risk and was already getting vision loss without treatment. I honestly believe the fear of losing sight was worse than actually having lost it now.
As an engineer, being able to drive to isolated sites is very useful. However I will just have to adapt my life, take on a job closer to a city where public transport is reliable. I have in 5 weeks adapted enough to leave the house independently without aid, building confidence more and more. I admit my remaining right hand side sight: the central right vision is very important and im grateful to have it. But I know another occipital lobe AVMer who had her whole right occipital lobe removed back when treatment wasn’t as advanced as it is now, leaving her legally blind. She is a successful councillor, runs her own personal campaign projects, can still read and write, and has studied a degree, masters and now onto her PHD since losing her vision.
I know the potential of losing your ability to drive must feel terrifying. But if it did happen, you will find another way around it to continue to provide for your family. You may be forced to adapt and make changes if it happened, but you’ll be fine and still have much potential for success.
I was told if I had been a less urgent case I could have had my AVM reduced in slower steps through several embolisations - they believed perminent sight loss would low risk and any sight loss would likely be temporary due to swelling. If your a candidate for embolisation this could be a potential option for you too. Or there are other options too. Every case is differant and its so easy to go into panic mode and think of your fear as worse than it actually would be if it happened.
Not saying sight loss is ideal or that its not something to avoid or that your fears aren’t totally valid (they are valid). but if you get several specialist opinions all agreeing your risk is higher without treatment than with - its important to really think it through and the decision is all yours. They could turn round and say they would rather monitor it - can’t know at this point.
Best of wishes and if you have any further questions always welcome to ask anything.
I had my AVM removed through embolizations and gammaknife and I lost peripheral vision in my left side of both eyes. I knew the risks and I was afraid to lose vision, but i feel better after the treatment. I don’t get migraines anymore. It was worth it to have the treatment. There are worse things in the world than not being able to drive. Good luck to you.
Hi everyone! I had a consultation with my neurosurgeon and we discussed treatment options. She does not believe that surgery is a good option at this time because of the location of my AVM and possible treatments. I am scheduled to have an angiogram next month and a functional MRI in August. She seems to believe that the wait and see approach may work if angiogram does not reveal any associated aneurysms or other complications. I will keep you all posted after the angiogram. I love this support group and I appreciate all of the kind feedback.