Hi everyone, i went to see my neurosurgeon on tuesday and we have decided to go with the embolization i was just wondering whether just that on its own will get rid of my avm or whether i will need any more treatment as my neurosurgeon has not mentioned anything else. My avm is grade 3 4cm x 2cm x 2cm
I think it’s hard to say. If the embos seal it all off, that should do it.
I think most who have been treated with embos also have some followon with either radiation or surgery, once the AVM is smaller following embo.
Ron, Ks
Your AVM is similar in size to what mine was, though not in location as it seems to me that yours is located in the occipital lobe. Have you considered seeking a second opinion just to cover all your bases? I highly recommend doing such. And I do agree with Ron, it seems odd that the embolization treatment is not going to be followed up with radiation or even surgery. Did your doctor give you any %'s for potential loss of vision in one eye, particularly for each treatment option? You should have been given a % range for potential loss of vision for each treatment option available (Embo, Radiation and surgery).
Best wishes going forward!!
Thank, Ray
They are going to embolize my daughter’s AVM the day before surgery. Our Radiologist said that he thinks that he can completely cut off the blood supply to her AVM, but that ONYX hasn’t been around long enough to know how long it will last, and the other embolizing materials they have used don’t have a great track record for complete obliteration for a lifetime. Therefore, even if he is successful in doing so, we would be best to have it removed while we have the opportunity to do so, which is of course what we are doing.
Hi Raymond, my doc said that it is possible i could loose part of my sight in my right eye but did not give any %. i have not gone for a second opinion as of yet as im not sure how to go about it plus its likely to get rid of it quicker if i stick to the neurosurgeon i have at the moment. I do find it strange that the doc has not mentioned anything about radiation etc all he said was that its too big to shrink by radiation
Raymond Downey said:
Your AVM is similar in size to what mine was, though not in location as it seems to me that yours is located in the occipital lobe. Have you considered seeking a second opinion just to cover all your bases? I highly recommend doing such. And I do agree with Ron, it seems odd that the embolization treatment is not going to be followed up with radiation or even surgery. Did your doctor give you any %'s for potential loss of vision in one eye, particularly for each treatment option? You should have been given a % range for potential loss of vision for each treatment option available (Embo, Radiation and surgery).
Best wishes going forward!!
Thank, Ray
Hi susan, i did mention to my doc that i heard that the onyx only lasts for 10 years and he said it would last longer than that.
Susan Troop (Lindsey’s Mom) said:
They are going to embolize my daughter’s AVM the day before surgery. Our Radiologist said that he thinks that he can completely cut off the blood supply to her AVM, but that ONYX hasn’t been around long enough to know how long it will last, and the other embolizing materials they have used don’t have a great track record for complete obliteration for a lifetime. Therefore, even if he is successful in doing so, we would be best to have it removed while we have the opportunity to do so, which is of course what we are doing.
Natalie,
Remember this is a BIG decision you are about to make and one that could have a LONG lasting impact on your daily life for years to come. You must seek out the option that is most beneficial to you given your current circumstances. Whenever we need to make a difficult decision, it’s usually helpful to gather other points of views, you ARE entitled to it. As medical treatments become more sophisticated, it becomes difficult for any one physician to be aware of all the latest medical information available. Second opinions offer reassurance and, most importantly, a peace of mind that a prescribed course of treatment is the best for you. Second opinions may provide a safeguard against unnecessary or inappropriate treatment. Not that its necessarily true in your case, but the embolization treatment of AVM’s has been around since the early 1980’s and it just may be what your doctor is most comfortable performing. You can not be afraid to ask your current doctor to give you the names of other specialists who have a great deal of experience in treating AVM’s. Physicians should not discourage you from obtaining a second opinion. Most people who seek second opinions do end up staying with their original doctor, but talking to another specialist can empower you to make decisions based on fully understanding all of your options. Heck, my original doctor, gave me a list of doctors to seek out a second opinion and agreed to do any follow-up treatment that would be medically necessary…and he did A LOT of follow-up treatment while I battled infection for 8 months!!
I’m assuming you already have all the preliminary medical tests out of the way, most importantly the angiogram. So meeting with another doctor won’t be as time consuming as you believe because you can simply take your angiogram, on a disc, with you for the second doctor to review.
If you do not elect to receive a second opinion, you certainly need to ask your current doctor many more questions. He must explain, to your satisfaction, why he feels the embolization treatment is preferred over another, i.e. Gamma Knife/Cyber knife radiation, or even surgery. You need to feel at ease with his plane of treatment, push and ask questions until you feel comfortable with his plan of treatment. Write down your questions before you meet with the doctor, its an emotionally charged decision, you need to bring in rationality…take a pen and paper. Let your doctor know you would like a ballpark range of %'s for risks associated with this treatment, i.e. vision loss, stroke, or other neurological setbacks. You MUST feel comfortable that the treatment you are to receive IS indeed the best option for you!!!
Thanks, Ray
natalie mills said:
Hi Raymond, my doc said that it is possible i could loose part of my sight in my right eye but did not give any %. i have not gone for a second opinion as of yet as im not sure how to go about it plus its likely to get rid of it quicker if i stick to the neurosurgeon i have at the moment. I do find it strange that the doc has not mentioned anything about radiation etc all he said was that its too big to shrink by radiation
Raymond Downey said:Your AVM is similar in size to what mine was, though not in location as it seems to me that yours is located in the occipital lobe. Have you considered seeking a second opinion just to cover all your bases? I highly recommend doing such. And I do agree with Ron, it seems odd that the embolization treatment is not going to be followed up with radiation or even surgery. Did your doctor give you any %'s for potential loss of vision in one eye, particularly for each treatment option? You should have been given a % range for potential loss of vision for each treatment option available (Embo, Radiation and surgery).
Best wishes going forward!!
Thank, Ray
my 8yo son is going through a 12 series of embos I don’t no the actual size of the avm I herd the doc say it’s a seven on a scale of one to ten he is on # 3 so far every 8 wks he has to have one he has right sided weakness and it hasn’t gotten any better we hope it will his headaches seem to have subsided if you have any questions please contact me I check my email daily;)
Raymond Downey said:
Natalie,
Remember this is a BIG decision you are about to make and one that could have a LONG lasting impact on your daily life for years to come. You must seek out the option that is most beneficial to you given your current circumstances. Whenever we need to make a difficult decision, it’s usually helpful to gather other points of views, you ARE entitled to it. As medical treatments become more sophisticated, it becomes difficult for any one physician to be aware of all the latest medical information available. Second opinions offer reassurance and, most importantly, a peace of mind that a prescribed course of treatment is the best for you. Second opinions may provide a safeguard against unnecessary or inappropriate treatment. Not that its necessarily true in your case, but the embolization treatment of AVM’s has been around since the early 1980’s and it just may be what your doctor is most comfortable performing. You can not be afraid to ask your current doctor to give you the names of other specialists who have a great deal of experience in treating AVM’s. Physicians should not discourage you from obtaining a second opinion. Most people who seek second opinions do end up staying with their original doctor, but talking to another specialist can empower you to make decisions based on fully understanding all of your options. Heck, my original doctor, gave me a list of doctors to seek out a second opinion and agreed to do any follow-up treatment that would be medically necessary…and he did A LOT of follow-up treatment while I battled infection for 8 months!!I’m assuming you already have all the preliminary medical tests out of the way, most importantly the angiogram. So meeting with another doctor won’t be as time consuming as you believe because you can simply take your angiogram, on a disc, with you for the second doctor to review.
If you do not elect to receive a second opinion, you certainly need to ask your current doctor many more questions. He must explain, to your satisfaction, why he feels the embolization treatment is preferred over another, i.e. Gamma Knife/Cyber knife radiation, or even surgery. You need to feel at ease with his plane of treatment, push and ask questions until you feel comfortable with his plan of treatment. Write down your questions before you meet with the doctor, its an emotionally charged decision, you need to bring in rationality…take a pen and paper. Let your doctor know you would like a ballpark range of %'s for risks associated with this treatment, i.e. vision loss, stroke, or other neurological setbacks. You MUST feel comfortable that the treatment you are to receive IS indeed the best option for you!!!
Thanks, Ray
natalie mills said:
Hi Raymond, my doc said that it is possible i could loose part of my sight in my right eye but did not give any %. i have not gone for a second opinion as of yet as im not sure how to go about it plus its likely to get rid of it quicker if i stick to the neurosurgeon i have at the moment. I do find it strange that the doc has not mentioned anything about radiation etc all he said was that its too big to shrink by radiation
Raymond Downey said:Your AVM is similar in size to what mine was, though not in location as it seems to me that yours is located in the occipital lobe. Have you considered seeking a second opinion just to cover all your bases? I highly recommend doing such. And I do agree with Ron, it seems odd that the embolization treatment is not going to be followed up with radiation or even surgery. Did your doctor give you any %'s for potential loss of vision in one eye, particularly for each treatment option? You should have been given a % range for potential loss of vision for each treatment option available (Embo, Radiation and surgery).
Best wishes going forward!!
Thank, Ray