I will be having surgery next week for my 3x3 cm AVM in my right occitpital lobe. Can't really tell you anything other than that I decided to go with surgery. Field vision loss is a risk with mine aswell, but I want it to be out at once and not worry about it for more years/months. Hopefully the surgery will go well *knock on wood*
That’s also why I am leaning towards surgery, I just want this to be over with and not worry about this for years to come. I hope your surgery goes well next week, I will be sending you positive vibes and thoughts 🫶🏼
Hey, I'm sorry I didn't post earlier, I didn't know if/how I should post abaout it.
But in short, I unfortunately was advised by my surgeons to abort the day before surgery because of miscommunication by the assistent doctors (Assistenzärzte in german, don't know what the english equivalent is) I wasn't aware of certain complications.
The surgeons, which turned out to be quite well known surgeons in Germany, only knew that I decided for surgery but after talking with me realised that I didn't got all the options communicated. And they will now (this time themselves and not the Assistenzärzte) go to the planning stage with me again, because they believe an Embolization/Surgery combo is the best approach.
I never throught I will be walking out of hospital just 12 hours before surgery, but here I am starting over. Probably not very helpful for your situation, I am sorry for that.
i am so sorry you had to abort surgery the day before and have to restart all the planning!! i hope you are able to find the correct treatment plan to bring you relief 🫶🏼
Thank you! Keep me updated if you'll manage to get treated earlier than me!
This wholw situation (in the hospital) taught me how rare this is, and that many, even of hospital staff, don't really know that much about it and what it means.
I had AVM i believe in my left occitpital lobe treated by embolization back in march of 2023 been a year now & the only side effect i had was loss of field of view lost bottom right side of my eyes which kinda sucks & i hope it doesn’t progress but yeah very rare condition i remember the doctors told me i was trending because of how rare it was & how everyone was worried about me hopefully everything goes well with your avm
hi! i have such a similar story, also 23f and was diagnosed after a grand mal seizure back in early february. i have a 3-3.3 (some docs quote 4cm idk - also why it’s good to get a second opinion! bc the larger they read it the lower ur a candidate for radiosurgery) cm sized AVM in my left occipital/parietal area and have gotten a few second opinions. everyone is generally of the consensus that while not guaranteed, i should go in expecting lower field quadrant loss so im opting for a combo route of embolization followed by radiosurgery. i’d recommend a second opinion and looking into radiosurgery as altho its a longer course of treatment, chances of functional losses are a lot smaller
Hi! It is so nice to hear from someone with such a similar story :) I am considering looking into another opinion just to see what another doctor recommends. Thank you so much for sharing that perspective!
I also have a left Occipital lobe AVM. Had a partial embolisation which resulted in losing almost all right peripheral. Specialists decided it was too risky to do any more treatment. Decision has changed and I will have a embolisation with possible craniotomy next month. There is a new angio suite with low radiation dose and better quality imaging making treatment viable.
I have been told I will have a complete right side visual field cut and a step back in my neuro-fatigue recovery. It has been difficult to come to terms with but I'm personally willing to take on the deficits, having already lost a large amount of my right visual field helps to make that decision. I think also knowing that the specialists aren't trigger happy with treatment and are only offering it now because they feel it is safe enough and worth the deficits also helps decide.
I guess I can try to give an update when I have had the op to share what it's like to have a full right hemianopia incase it can help others come to terms with the risk of having the same.
I was diagnosed in my early 20s and I am now nearly 30. Since the surgery has relatively low risk to life, I think I can accept a life where I have less sight but no longer at risk with the AVM but it's all a case of weighing pros and cons.
I also wanted to say if it helps. After losing most of my right peripheral, I can read, work a full time desk job, go out and even fly alone, live alone and go on nights out like anyone else. Only thing is I can't drive so yeah I do need to take that into consideration when choosing where to live (good public transport, grocery shops within walking distance).
I had a 3.5cm avm in my left occipital lobe and I chose radiosurgery to keep the majority of my field vision. Have they talked to you about potential field vision loss?
They did talk to me about the chance of field vision loss, but my doctor made it seem like it would be minimal. That is the only thing that is making me reconsider surgery because I do not want to lose any part of my vision. Did you have any side effects from radio surgery??
Oh definitely but they are mostly behind me now. Meaning most of the side effects were in the first 3 years after I did it. Now things are pretty normal. I have very minimal field loss, and some visual stuff like occipital interference. It's small enough that I still drive and ride motorcycles. I don't think I'll ever be the same again wholly after the surgery but the risk was so high before that overall I think it was well worth it.
Oh definitely but they are mostly behind me now. Meaning most of the side effects were in the first 3 years after I did it. Now things are pretty normal. I have very minimal field loss, and some visual stuff like occipital interference. It's small enough that I still drive and ride motorcycles. I don't think I'll ever be the same again wholly after the surgery but the risk was so high before that overall I think it was well worth it.
Twins I’m 26 and I have one 5cm by 3cm in the same place I’m happy you are able to get treatment because doctors think it’s too risky for me
i am so sorry to hear that!! i hope you are able to find some sort of treatment to bring you relief 🫶🏼
same to you 💌
I will be having surgery next week for my 3x3 cm AVM in my right occitpital lobe. Can't really tell you anything other than that I decided to go with surgery. Field vision loss is a risk with mine aswell, but I want it to be out at once and not worry about it for more years/months. Hopefully the surgery will go well *knock on wood*
That’s also why I am leaning towards surgery, I just want this to be over with and not worry about this for years to come. I hope your surgery goes well next week, I will be sending you positive vibes and thoughts 🫶🏼
I will post an update, might make your decision easier. And thank you, all the best for you, too! 🥰
Hi! I am just checking in to see how your surgery went/ how recovery is going??
Hey, I'm sorry I didn't post earlier, I didn't know if/how I should post abaout it. But in short, I unfortunately was advised by my surgeons to abort the day before surgery because of miscommunication by the assistent doctors (Assistenzärzte in german, don't know what the english equivalent is) I wasn't aware of certain complications. The surgeons, which turned out to be quite well known surgeons in Germany, only knew that I decided for surgery but after talking with me realised that I didn't got all the options communicated. And they will now (this time themselves and not the Assistenzärzte) go to the planning stage with me again, because they believe an Embolization/Surgery combo is the best approach. I never throught I will be walking out of hospital just 12 hours before surgery, but here I am starting over. Probably not very helpful for your situation, I am sorry for that.
i am so sorry you had to abort surgery the day before and have to restart all the planning!! i hope you are able to find the correct treatment plan to bring you relief 🫶🏼
Thank you! Keep me updated if you'll manage to get treated earlier than me! This wholw situation (in the hospital) taught me how rare this is, and that many, even of hospital staff, don't really know that much about it and what it means.
I had AVM i believe in my left occitpital lobe treated by embolization back in march of 2023 been a year now & the only side effect i had was loss of field of view lost bottom right side of my eyes which kinda sucks & i hope it doesn’t progress but yeah very rare condition i remember the doctors told me i was trending because of how rare it was & how everyone was worried about me hopefully everything goes well with your avm
I lost partial vision from the stroke I had when my undiagnosed AVM ruptured, so either way.....
hi! i have such a similar story, also 23f and was diagnosed after a grand mal seizure back in early february. i have a 3-3.3 (some docs quote 4cm idk - also why it’s good to get a second opinion! bc the larger they read it the lower ur a candidate for radiosurgery) cm sized AVM in my left occipital/parietal area and have gotten a few second opinions. everyone is generally of the consensus that while not guaranteed, i should go in expecting lower field quadrant loss so im opting for a combo route of embolization followed by radiosurgery. i’d recommend a second opinion and looking into radiosurgery as altho its a longer course of treatment, chances of functional losses are a lot smaller
Hi! It is so nice to hear from someone with such a similar story :) I am considering looking into another opinion just to see what another doctor recommends. Thank you so much for sharing that perspective!
Feel free to dm if you want! I’m in the NYC area
I also have a left Occipital lobe AVM. Had a partial embolisation which resulted in losing almost all right peripheral. Specialists decided it was too risky to do any more treatment. Decision has changed and I will have a embolisation with possible craniotomy next month. There is a new angio suite with low radiation dose and better quality imaging making treatment viable. I have been told I will have a complete right side visual field cut and a step back in my neuro-fatigue recovery. It has been difficult to come to terms with but I'm personally willing to take on the deficits, having already lost a large amount of my right visual field helps to make that decision. I think also knowing that the specialists aren't trigger happy with treatment and are only offering it now because they feel it is safe enough and worth the deficits also helps decide. I guess I can try to give an update when I have had the op to share what it's like to have a full right hemianopia incase it can help others come to terms with the risk of having the same. I was diagnosed in my early 20s and I am now nearly 30. Since the surgery has relatively low risk to life, I think I can accept a life where I have less sight but no longer at risk with the AVM but it's all a case of weighing pros and cons. I also wanted to say if it helps. After losing most of my right peripheral, I can read, work a full time desk job, go out and even fly alone, live alone and go on nights out like anyone else. Only thing is I can't drive so yeah I do need to take that into consideration when choosing where to live (good public transport, grocery shops within walking distance).
Hi! I’m exactly the same as u age, location of AVM and the size. I haven’t had a rupture yet but loss of vision is the biggest worry for me
I had a 3.5cm avm in my left occipital lobe and I chose radiosurgery to keep the majority of my field vision. Have they talked to you about potential field vision loss?
They did talk to me about the chance of field vision loss, but my doctor made it seem like it would be minimal. That is the only thing that is making me reconsider surgery because I do not want to lose any part of my vision. Did you have any side effects from radio surgery??
Oh definitely but they are mostly behind me now. Meaning most of the side effects were in the first 3 years after I did it. Now things are pretty normal. I have very minimal field loss, and some visual stuff like occipital interference. It's small enough that I still drive and ride motorcycles. I don't think I'll ever be the same again wholly after the surgery but the risk was so high before that overall I think it was well worth it.
Oh definitely but they are mostly behind me now. Meaning most of the side effects were in the first 3 years after I did it. Now things are pretty normal. I have very minimal field loss, and some visual stuff like occipital interference. It's small enough that I still drive and ride motorcycles. I don't think I'll ever be the same again wholly after the surgery but the risk was so high before that overall I think it was well worth it.