I doubt about the effectiveness of EMBOLIZATION as sole method of treatment.Is any member of the community treated by only embolization without following by open surgery or gamma knife?
I am only being treated by embos…as for me I cannot have surgery :(. This is what I ws told but am going back to NY next week to see what they say again. Mare
I have 2 avms and the large one has been treated by embolization only . Acording to my dr its obliterated Good luck !
My husband had an embolization done with no follow-up treatment. The embo was done in 2 stages, 2005 and early 2006, and angiograms show that everything is still as it should be. (He needs angiograms because of clips he has from a previous surgery–you will probably be monitored after your embo by yearly MRIs, which are very easy and safe for you.)
Last time I had an embolization…Did not work Docctor couldnt reached because of the position of the avm…Know Im schedule for gamma knife on feb 2010…Maybe for you will work, good luck…
I was offered open surgery, Gamma Knife emobolization or a combination of all 3! My surgeon opted for embolization & I went with this. So far after 3 years no complaints SO FAR!!
But in your profile, you have mentioned Crainotomy as second part of the treatment.
JH said:
My husband had an embolization done with no follow-up treatment. The embo was done in 2 stages, 2005 and early 2006, and angiograms show that everything is still as it should be. (He needs angiograms because of clips he has from a previous surgery–you will probably be monitored after your embo by yearly MRIs, which are very easy and safe for you.)
In your profile, you have mentioned that your AVM is still active.Is it true?
Thomas said:
I was offered open surgery, Gamma Knife emobolization or a combination of all 3! My surgeon opted for embolization & I went with this. So far after 3 years no complaints SO FAR!!
The craniotomy was the FIRST treatment he ever had, LONG ago, and it didn’t work. It was done in the early 1980s, before the kind of imaging technology that exists today, so it just stopped the bleeding and didn’t remove the AVM. A doctor found the AVM in 2005 and did 2 embos then. Nothing since. So he still has the material from the embolization in his brain now, there are no plans to remove it, and he’s doing fine.
Note: When you look at profiles, be aware that the “How was the AVM treated?” part of the profile does NOT let us put the treatments in order. The “Share your experience” section is where people CAN tell you the order in which their treatments were done.
Alireza said:
But in your profile, you have mentioned Crainotomy as second part of the treatment.
JH said:My husband had an embolization done with no follow-up treatment. The embo was done in 2 stages, 2005 and early 2006, and angiograms show that everything is still as it should be. (He needs angiograms because of clips he has from a previous surgery–you will probably be monitored after your embo by yearly MRIs, which are very easy and safe for you.)
I developed a dura AVM which has now become what the doctor calls a malignant AVM Fistula. I underwent embolization in 2005 I beleive. I undewent another cerebral angiogram in Dec. 2008.
I then underwent another embolization in Feb. 2009.
I began having further headaches and bruit so I underwent another cerebral angiogram in Nov. 2009.
Now the doctor says I need another embolization and wants to do it ASAP. He claims he failed to completely embolize the last time.
I asked the doctor what the prognosis is with the AVM, and he said it was what he calls a malignant AVM fistula and will continue to grow and will need additional embolizations every year or two.
Since I am a retired disabled veteran my medical is covered by the VA which I am very thankfull for. The VA Hospital in Seattle apparently does not have the capability or equipment to treat AVM’s, so I am farmed out to Harborview Medical Center in Seattle. The neurosurgeon is a professor of neurology at the U Of W who seems quiet capable, but I don’t know how many cerebral angiograms and embolizations my old body can take before I make the BIG PCS.
I am 77 years of age and so far I have had six cerebral angiograms and two embolizations. I am becoming very frustrated and fed up with the angiograms which are just as hard on me as the embolizations. I am hesitant to undergo another embolization at this time. So far I have never had a bleed since the AVM was diagnosed and treated quickly.
I do notice there is some verbal skill loss, and I would hate to have a bleed.
My doctor has never mentioned the Gamma Knife or cranialotomy. I don’t know if it’s because of my age or the cost. I do know that Harborview Medical Center has Gamma Knife equipment. so for now I will hold off on the third embolization at least until after the holidays.
I started the treatment with embolizations but after some complications i had 4-5 open surgeries.But i think if you firts start with open surgery you have 50-50 possibilities and as i can see gamma knife has many many side effects
Dewey I’m not so sure that its the procedure as much as its the the dr doing it. My first embolization
took 12 hours after a 3 hr angio the day before . All of my hair fell out my scalp was burned so bad I couldn’t lay my head down and that was after I was in the ICU for two and a half days. The next embolization took four and half hours and that included my angio 3 hrs in recovery and I could have whent home I felt so good different dr and hospital I hate to say this but some of these dr should be Truck drivers no no maybe lawn care Gordon
Dewey M Reynolds said:
I developed a dura AVM which has now become what the doctor calls a malignant AVM Fistula. I underwent embolization in 2005 I beleive. I undewent another cerebral angiogram in Dec. 2008.
I then underwent another embolization in Feb. 2009.
I began having further headaches and bruit so I underwent another cerebral angiogram in Nov. 2009.
Now the doctor says I need another embolization and wants to do it ASAP. He claims he failed to completely embolize the last time.
I asked the doctor what the prognosis is with the AVM, and he said it was what he calls a malignant AVM fistula and will continue to grow and will need additional embolizations every year or two.
Since I am a retired disabled veteran my medical is covered by the VA which I am very thankfull for. The VA Hospital in Seattle apparently does not have the capability or equipment to treat AVM’s, so I am farmed out to Harborview Medical Center in Seattle. The neurosurgeon is a professor of neurology at the U Of W who seems quiet capable, but I don’t know how many cerebral angiograms and embolizations my old body can take before I make the BIG PCS.
I am 77 years of age and so far I have had six cerebral angiograms and two embolizations. I am becoming very frustrated and fed up with the angiograms which are just as hard on me as the embolizations. I am hesitant to undergo another embolization at this time. So far I have never had a bleed since the AVM was diagnosed and treated quickly.
I do notice there is some verbal skill loss, and I would hate to have a bleed.
My doctor has never mentioned the Gamma Knife or cranialotomy. I don’t know if it’s because of my age or the cost. I do know that Harborview Medical Center has Gamma Knife equipment. so for now I will hold off on the third embolization at least until after the holidays.
Gordon:
That is a lot of difference. How did they end up burning your scalp? I certainly stick with the second doctor.
Gordon D said:
Dewey I’m not so sure that its the procedure as much as its the the dr doing it. My first embolization
took 12 hours after a 3 hr angio the day before . All of my hair fell out my scalp was burned so bad I couldn’t lay my head down and that was after I was in the ICU for two and a half days. The next embolization took four and half hours and that included my angio 3 hrs in recovery and I could have whent home I felt so good different dr and hospital I hate to say this but some of these dr should be Truck drivers no no maybe lawn care Gordon
Dewey M Reynolds said:I developed a dura AVM which has now become what the doctor calls a malignant AVM Fistula. I underwent embolization in 2005 I beleive. I undewent another cerebral angiogram in Dec. 2008.
I then underwent another embolization in Feb. 2009.
I began having further headaches and bruit so I underwent another cerebral angiogram in Nov. 2009.
Now the doctor says I need another embolization and wants to do it ASAP. He claims he failed to completely embolize the last time.
I asked the doctor what the prognosis is with the AVM, and he said it was what he calls a malignant AVM fistula and will continue to grow and will need additional embolizations every year or two.
Since I am a retired disabled veteran my medical is covered by the VA which I am very thankfull for. The VA Hospital in Seattle apparently does not have the capability or equipment to treat AVM’s, so I am farmed out to Harborview Medical Center in Seattle. The neurosurgeon is a professor of neurology at the U Of W who seems quiet capable, but I don’t know how many cerebral angiograms and embolizations my old body can take before I make the BIG PCS.
I am 77 years of age and so far I have had six cerebral angiograms and two embolizations. I am becoming very frustrated and fed up with the angiograms which are just as hard on me as the embolizations. I am hesitant to undergo another embolization at this time. So far I have never had a bleed since the AVM was diagnosed and treated quickly.
I do notice there is some verbal skill loss, and I would hate to have a bleed.
My doctor has never mentioned the Gamma Knife or cranialotomy. I don’t know if it’s because of my age or the cost. I do know that Harborview Medical Center has Gamma Knife equipment. so for now I will hold off on the third embolization at least until after the holidays.
Dewey Long story short I was in a hospital for 5 days with a visual seizure after 100s of tests and an angio they found the AVM, but could not treat it there . So they shipped me off to another hospital where
i spent another day and a half in the seizure till they dropped my blood pressure and I came out of the seizure Thats when they performed the embolization that took about 12hr with glue…that sounds funny gluuuuuuuuuuuuuuuuuuuuuuue lol. I was under the x-ray that long and exposed to the radiation that results in my scalp being burnt and I lost my hair and I didn’t have much to loose lol . I guess I was that doctor’s Mt Everest, I know how he felt My Andrea doria I hope I’m not telling something that will scare somebody because this was just my experience and I know from reading others, we’re all different. Gordon Oh by the way nice fish
It really sounds like they put you through the wringer. I can’t beleive it took 12 hours for an embolization. My first embolization only lasted about two hours and an overnight stay in the hospital. The second embolization was about three hours since it had progressed further into the brain. That also included an overnight stay in the hospital.
Of course I have not had a seizure or a bleed, and hope and pray I never do.
The last time I talked to my doctor he didn’t sound very encouraging. He said the AVM was classed as malignant, neaning it would continue to grow and would need more embolizations in the future. He said the last embolization was very difficult, but didn’t explain why, other than to say it had progressed further into the brain.
I guess I am fortunate being 77 years of age, since I don’t have as long to put up with it as most people. My AVM was caused by head trauma while I was in the military, but it took a long time to make itself known.
That fish was smaller than the one I caught a few minutes after the photo was made. It was 50 lbs but my son’s camera got wet and wouldn’t work, so I never got a photo of the largest salmon I ever caught.
My prayers go with you Gordon.
Gordon D said:
Dewey Long story short I was in a hospital for 5 days with a visual seizure after 100s of tests and an angio they found the AVM, but could not treat it there . So they shipped me off to another hospital where
i spent another day and a half in the seizure till they dropped my blood pressure and I came out of the seizure Thats when they performed the embolization that took about 12hr with glue…that sounds funny gluuuuuuuuuuuuuuuuuuuuuuue lol. I was under the x-ray that long and exposed to the radiation that results in my scalp being burnt and I lost my hair and I didn’t have much to loose lol . I guess I was that doctor’s Mt Everest, I know how he felt My Andrea doria I hope I’m not telling something that will scare somebody because this was just my experience and I know from reading others, we’re all different. Gordon Oh by the way nice fish
Dear Mare
I have no news from you since following message.Did you take more embolization or open surgery?
What is your avm situation now?
Is it completely treated?
Any complication?
Please update me about yourself.
Mare said:
I am only being treated by embos...as for me I cannot have surgery :(. This is what I ws told but am going back to NY next week to see what they say again. Mare
Dear Gordon
By just Embolization or embo & Gammaknife together?
Gordon D said:
I have 2 avms and the large one has been treated by embolization only . Acording to my dr its obliterated Good luck !
Dear Thomas
Is still your AVM active?
Thomas said:
I was offered open surgery, Gamma Knife emobolization or a combination of all 3! My surgeon opted for embolization & I went with this. So far after 3 years no complaints SO FAR!!
Hello
How is your husband?
Why Dr could not remove the avm in the first operation(open surgery)?
Any complication now?
Is it now fully occluded by embo?
JH said:
My husband had an embolization done with no follow-up treatment. The embo was done in 2 stages, 2005 and early 2006, and angiograms show that everything is still as it should be. (He needs angiograms because of clips he has from a previous surgery--you will probably be monitored after your embo by yearly MRIs, which are very easy and safe for you.)
Hi Alireza,
The only treatment option for my spinal cord AVM is embolization, because it is intramedullary - within the cord, almost in the middle, but anterior and to the right a little bit.
My neurosurgeons and neurologists have said that attempting surgery would most likely make me a quad. They have also said that if the AVM were to bleed again, they might have to do surgery, but by embolizing, as many times as I need it, we will hopefully be able to avoid the need for surgery. Obviously we want to avoid that at all costs, if possible.