Positive feed back

Hello, I am Chelsea and I was 26 last March when I discovered I had AVM. My case is in the right lower occipital lobe. Really scared and almost feel like I have the worst location possible…but will only know after I see medical researchers hopefully soon. I was in denial about all this till yesterday when I had another neurologist diagnose me. I never quit drinking with my friends, I quit keppra because my.family said I was “crazy”…and Ive been blessed not to have anything occur since my seizure last march. I used to be so healthy and active and now I’m afraid. Afraid I’ll have to drop out of school for whatever has to happen, afraid I’ll get a stroke like others and lose some functional ability or worse, afraid I’ll have to watch my blood pressure/physical activity the rest of my life. I just want supportive stories if possible. And by supportive… I mean you didn’t bleed ever again after treated and what recovery was like. And is it common to remain on meds for life? I really hope not… Are you safe from this reoccurring?

Hi Chelsea…welcome and rest assure that you are at the right place for support. Everyone’s case is different however the success stories are inspirational…I was 30 when I found out I had an AVM so we are close in age. It changed my life forever and still after 4+yrs after my surgery I still worry at times, which is human nature.

My only advice is to becareful with alcohol and medication, especially associated to seizures. This experience will make you a better person and you will appreciate everyday the way everyone should…don’t be scared just be positive and have faith that you will be okay and life will continue no matter what…it’s how you approach it and live it which will determine your future…as I read your post I see a lot of concerns I had when I found out I had my AVM and so far I have not seen anyone here have a bleed after successful AVM removal.

Keep us posted on your journey cause I can assure you there are ppl here who have gone through similar issues…God bless!

Hi Chelsea
Mine was in same place as many are on here its defo not the worst location I was actually told was one of the easiest places to treat so imagine a good chance of cure for you.
All the best and let me know how you get on…By the way you have a great name its my favourite football team here in the uk (-:

Take Care

Hi Chelsea, I was 28 when my AVM was found, the week I delivered my son! I of course was very scared. The neurologist sent me to Boston,MA to see DR's there because it was 25 years ago and the hospitals there were much more up to date, state-of-the-art. I had AVM embolized then surgery planned to remove it. The DR called the day before surgery to tell me I was a candidate for laser surgery instead. While still VERY scary, I had it done successfully. No meds, no problems and recently an angiogram to check that everything is good. So I can say not to worry but it's human nature. Stay positive and just know there are many of us who have been through so much but you have to have faith in all the new technology. Please keep us posted.

Thank you for all the nice comments. I’m glad this forum is active and friendly.

Adrian, you say it changed your life forever… As in how? And yeah you’re right, I’m not going to drink anymore really. I never really would get more than buzzed before but now I just want to be careful. As for my meds… Idk. I’m sure the research specialists will want me to go on them and then I will.

Thank you Daven, that’s good news. Yeah haha blah :stuck_out_tongue: I don’t follow soccer. Are you doing ok since your treatment?

That is probably the scariest position possible but so encouraging that you survived and had state of the art medical treatment. I hope I have the same in Seattle… Thank you for the kind words of support.

I’m fearful that they may send me home and do nothing… But yes I will keep an update. The worst is almost not knowing…

Chelsea…it changed my outlook on life…I changed for the better as a person and appreciate the small things in life we take for granted…I was lucky to come out of surgery ok but the whole ordeal made me a better person.

God bless!

A fellow Blues supporter…good to see buddy…God bless!

That’s good to know. That makes me happy…

Hi Chelsea! Welcome to this beautiful community.
I had a right occipital pole AVM, near the midpoint between left and right hemispheres. I had a seizure earlier this year, in February, when they found the AVM. I’m 29, and like you, was very healthy, no previous health issues, and I was dead scared and worried of the unknown. I was worried about how my life would change and how I would cope with a vision loss.
I finally made the decision to get it removed. I had a craniotomy 6 weeks ago. All went beautifully. I am recovering well, everything is back to normal. I am in the recovery process now, I just get tired more quickly but that’s improving everyday. I just had a follow up angiogram this morning, and it is confirmed, the AVM has been completely removed!
The doctor said to me that the occipital lobe is probably the “best” spot for an AVM (sorry not the best choice of words there).
I am on Keppra (I don’t suffer any side effects) and my neurologist believes I’ll be on it long term. I don’t mind though, because I don’t have any adverse effects to it.

It is definitely not an easy road, and not an easy decision to make. But as one of the members here made me realise, I’d rather live with some visual deficit, than the alternative.

Good luck Chelsea, don’t hesitate to ask if I can be of any more help. Xxx

How is that the best location for an avm if you lost your vision? How much did you lose? Are you able to still work? Will I still be able to be a dental assistant? Congratulations on getting your avm removed, that’s great. But why if it’s removed, must you remain on keppra? And have you had another seizure since?

Also how long do you think your recovery will be?

Hi Chelsea. Welcome to the group. My AVM was also in my right occipital (and parietal) lobes. Unfortunately, I did have a major bleed. I was treated with a series of embolizations and then a craniotomy to remove the AVM. I am indeed cured, at least of the AVM. It is completely gone and will never come back. My bleed did leave me with some major deficits I live a very full life. Like Adrian, it changed my life forever but I am very happy and healthy. I've never had a seizure so I don't have to take medication but before you quit yours be sure to check with your neurologist. I would highly recommend getting at least one other opinion, more if possible. Best wishes and feel free to ask any questions.

Hello Chelsea. I had my AVM discovered after one seizure in 1975. At that time, I was living in Indiana and no local neurosurgeon would operate. I ended up going to the Mayo Clinic in Minnesota and my AVM (right parietal lobe) was "successfully removed" in September, 1975. I was 16 years old, so my parents made all the tough decisions. a few months after the surgery, I began having seizures. I was confused, because I thought the purpose of the operation was to stop seizures from ever occurring again. I was taking anticonvulsant (anti seizure) medicines at the time, and the dose was adjusted. I was home schooled for the semester following my first surgery (which was ludicrous, looking back. The reason given was to "keep me from having a seizure at school"). While the surgery was successful in removing the AVM, the surgery left me with some scar tissue inside my brain (from removing the AVM) which was the reason I had seizures after surgery. Eighteen months later I had the AVM recur, but this is EXTREMELY RARE, and the second AVM was removed in 1977 (I turned 18 in the ICU). I finished HS, completed a Bachelor's and Master's Degree at college. I have always lived alone and I have worked alone for years. In 1992 I had a small AVM "in the area of previous surgery" and this was successfully removed, though it was elective (I could not live with this "small" thing in my head but it posed little danger medically). again, this is EXTREMELY EXTREMELY RARE, this 2nd "recurrence..."
Some people never have seizures before or after surgery, some people only have them before, and some of us have them before and after. No one will know until after surgery is performed. I had sporadic Seizures for about five years after surgery, then very rare was it that I had a seizure. My last seizure was over 10 years ago. I take no medicine now, and i'm 56. I have a bias for surgical removal of AVMs, because I had excellent surgeons and surgery "Makes Sense" to me - they open my skull, clip the "feeder vessels" to the AVM, take the AVM out, sew me back up. With surgery, the doctors are able to see everything. I would recommend you get a 2nd Surgical opinion before deciding what treatment to go forward with. You would be surprised at how different you will feel when you have a confident, competent, well-respected neurosurgeon taking care of you. Despite all the worries of my limitations, I really had none after surgery except those put on me by overly cautious doctors.

Hi Chelsea,
I did not lose any vision. My vision is completely intact.

I am not a doctor and every case is different but my understanding and from my experience, I think what the doctors mean by the best location, is that, although you may have some peripheral vision loss, vision would be the only affected sense. Compared to the other lobes, which control more than one function. e.g. the frontal lobe is associated with motor movements, cognition, reasoning, planning… the parietal lobe is associated with touch, processing feelings, memory… the temporal lobe is associated with hearing, speech, memory etc.

Depending on the area in the occipital lobe, I suppose, I am not sure if you would go “blind”, which was my concern and my greatest fear. In my case, my surgeon had predicted that there would be a chance of losing vision to the left side of things (left homonymous hemianopia) which means that both my eyes would see to the right, but not the left. I am a speech pathologist and audiologist, and I was worried about my work too. I spoke to a neuro-ophthalmologist, a neurosurgeon and my boss, and we all agreed that there would be ways around it, should I have a hemianopia. The neuro-ophthalmologist and neurosurgeon said that young people adapt really quickly and find strategies to get around the hemianopia. They didn’t think it would impact on my work if we could make a few modifications in the clinic. So my boss said we would be able to rearrange the clinic, make my office more adaptable, e.g. move the equipment to the right of the desk so I can see it, and increase the font on paperwork etc.

The purpose of removing the AVM, I was told, was not to stop the seizures. It was to prevent the AVM from rupturing and bleeding, which would cause more damage to the brain than just vision. The risk of the AVM rupturing is around 3% every year. So I would have a 90% chance of a rupture over the next 30 years (when I am 60). I remember saying to my doctor, but it is only 3%!! He said the problem with statistics is that it depends on which side of the fence you look at it from. From a scientific point of view, yes, 3 in a 100 patients having a bleed is great stats. But from a patient point of view, what if I were one of these 3 people… then it wouldn’t be great stats for me…

Removing the AVM can cause scar tissue, and because they have removed some brain tissue, it can cause a short circuit in the brain signals (which causes seizures). This is why my doctor is cautious about weaning me off the medications just yet. He said that if I decide to become pregnant, we will look at maybe reducing the dosage of Keppra, in terms of controlling pregnancy complications, and if after 5 years I have been seizure free, we could start weaning me off it.

I have not had a seizure since my operation in July. I am going back to work on 14 September and I feel ready for it :slight_smile:

Sorry for the very long response. Hope it helps.

PS I agree with Trish, it might be worth getting a second opinion to help you with your decision.

Ahh I see what you mean not by vision loss. Yeah I am pretty worried about that and all possible outcomes… Losing vision in the left side actually is really terrifying for me to think about but yeah I would rather that than lose function in my legs or arms. But that’s really encouraging that you are recovering quickly and without any major problems.
Yeah I think about the statistics too… And I had a seizure already from my AVM so I feel like a ticking time bomb for a bleed now and it scares me.
Yeah I’m actually lined up to see a neurosurgeon, another neurologist who may refer me to another team of epilitoligists and radiologists ect. I actually have my first appointment Wednesday…and my grandma flew in from Arizona. I’m grateful for everything I have…

Also I hope and pray you remain seizure free. Seizures are so scary… Its kept me away from the gym because mine occurred there

I said I didn’t want stories of a second bleed after surgery. Its good for me to know the possible outcomes but I’m really tired of crying every day and I only asked for one thing.

Second bleed, second or third avms no, I would really appreciate NOT hearing about that. However, you are very brave to get through all those surgeries and I’m glad you’ve been avm free and seizure free for that long

As the member mentioned Chelsea it is very rare and you will also need to consider the years they underwent surgery and the fact they were also young…as you see they were 16 when it first happened in 1975 and A LOT of new technology is out there now…you will be fine just be strong…God bless!

Yes, I cried for months, constantly being scared about losing my left vision. It took me a long time to come to terms with it, and accept that it could be a potential complication. I personally, could not decide on doing anything about the AVM, until I was fully prepared to deal with any potential consequences. I think you are doing the right thing by seeing all these specialists so that you know what you are up against. Ask them lots of questions so that you can make an informed decision.

I know what you mean about the ticking time bomb feeling! That’s exactly how I felt after having 2 seizures. One of my seizures was after a gym session as well, so I have kept away from the gym, like you. I have been able to slowly get back into it now, after the operation.

Thank you for your prayers :slight_smile: I’m thinking about you and I can relate to your fears. Alkyl the best for Wednesday. It’s great to have your grandmother coming, it will be lovely for you.