survived brain surgery - found it from ct headscan after years of headaches
im free after a embolization and brain surgery. this happened to me a year ago wen i was 11
Good luck to you, Rachel. I am avm free after having brain surgery when I was 9. It sounds like things are going well for you so far. I’m sure you’ll come through it all just fine. 
I will keep you in my thoughts.
I am AVM free after brain surgery
Congratulations and I hope things continue to go well for you. I am going to be embolized in Dec. Can you tell me about your personal experience with the process. Any cognitive deficits or issues with Strength, side effects, etc. Did you discuss the option of only embolizing (no radiation)? My thoughts are with you…
Caroline
Yep, I’m AVM-free after having brain surgery 12 years ago, but it was a close call!
I have been AVM free for the last nine years. I had emergency brain surgery, I did not have to make that decision, since I was pregnant with my daughter. I hope and pray that things will look better for you.
In Gods Hands
Kelli
Can anyone tell me about their embolizations specifically? What drug they put you on just after the embol, what side effects you experienced in the neuro ICU and just after the procedure? Did you have to have someone watch after you when you got out of the hospital and how long were you out of work. Any prolonged side effects…etc.
I had 2 embolizations - 1st in May end and 2nd in mid July. May procedure was uneventful. They gave me Decadron (Steroid) to minimize brain swelling. I wan normal in 2 days. 2nd procedure resulted in more brain swelling causing stroke and weakness on left side of my body, double vision. After 4 1/2 months of physical therapy, I have regained 90% of my balance and muscle strength, but fine motor movement in left hand is still not there yet. Numbness on lips and in mouth is still improving, so I have hope for more recovery! As you must have realized, each case is different, so it is impossible to draw a general conclusion. I will be going thru cyberknife treatment in 2 weeks, that could have its own complications!
Caroline Niblock said:
Can anyone tell me about their embolizations specifically? What drug they put you on just after the embol, what side effects you experienced in the neuro ICU and just after the procedure? Did you have to have someone watch after you when you got out of the hospital and how long were you out of work. Any prolonged side effects…etc.
Hi I had my 1st embolization in Feb 09, they glued 50% using onyx, glue i spent 2 nights in intensive care and then a day in ward and then went home. A week later my hair fell out due to the radiation from the X-ray machine as i was under it for 6 hours.I suffered a big braing haemorhhage in July 09, and required a craniotomy, this was 4 weeks before my 2nd embo was to take place. I finally had my 2nd embolization in Sept 09, they glued 20% and I suffered a SAH, Subharachonid haemorrhage, I am okay though, I have my next embolization and angio tomorrow morning, 4th December. Hope this helps
Caroline Niblock said:
Can anyone tell me about their embolizations specifically? What drug they put you on just after the embol, what side effects you experienced in the neuro ICU and just after the procedure? Did you have to have someone watch after you when you got out of the hospital and how long were you out of work. Any prolonged side effects…etc.
Thank you for the information Manny. I am sorry to hear of your stroke. I wish you all the best. This information helps. Have a great Holiday! Caroline
Manny Patel said:
I had 2 embolizations - 1st in May end and 2nd in mid July. May procedure was uneventful. They gave me Decadron (Steroid) to minimize brain swelling. I wan normal in 2 days. 2nd procedure resulted in more brain swelling causing stroke and weakness on left side of my body, double vision. After 4 1/2 months of physical therapy, I have regained 90% of my balance and muscle strength, but fine motor movement in left hand is still not there yet. Numbness on lips and in mouth is still improving, so I have hope for more recovery! As you must have realized, each case is different, so it is impossible to draw a general conclusion. I will be going thru cyberknife treatment in 2 weeks, that could have its own complications!
Caroline Niblock said:Can anyone tell me about their embolizations specifically? What drug they put you on just after the embol, what side effects you experienced in the neuro ICU and just after the procedure? Did you have to have someone watch after you when you got out of the hospital and how long were you out of work. Any prolonged side effects…etc.
I had two embo’s…one last Dec, one in Jan 09. I had no side effects and everything went smooth! 
Caroline Niblock said:
Thank you for the information Manny. I am sorry to hear of your stroke. I wish you all the best. This information helps. Have a great Holiday! Caroline
Manny Patel said:I had 2 embolizations - 1st in May end and 2nd in mid July. May procedure was uneventful. They gave me Decadron (Steroid) to minimize brain swelling. I wan normal in 2 days. 2nd procedure resulted in more brain swelling causing stroke and weakness on left side of my body, double vision. After 4 1/2 months of physical therapy, I have regained 90% of my balance and muscle strength, but fine motor movement in left hand is still not there yet. Numbness on lips and in mouth is still improving, so I have hope for more recovery! As you must have realized, each case is different, so it is impossible to draw a general conclusion. I will be going thru cyberknife treatment in 2 weeks, that could have its own complications!
Caroline Niblock said:Can anyone tell me about their embolizations specifically? What drug they put you on just after the embol, what side effects you experienced in the neuro ICU and just after the procedure? Did you have to have someone watch after you when you got out of the hospital and how long were you out of work. Any prolonged side effects…etc.
Hey Rachel
Im a eleven year suvivor, AVM free after it, they went in on mine and clipped out the clot and was laid up in icu for 45 days, came through a surgery that was predicted to take 13 hours in nine and sitting up in icu, i had mine operated in Dallas Women and Children because of my family being from there and my mom’s research on team of surgens that were willing to do the surgery. Im sorry to hear that its gotten that bad, and my prayers are with u.
i HAD A CRANIOTOMY. aCCORDING TO THE ANGIOGRAM SHORTLY AFTER THE SURGERY, THE avm IS COMPLETELY GONE. tHEN, LAST WEEK, MY NEUROSURGREON DECIDES TO LET ME KNOW THAT THE FIRST ANGIO IS UNRELIABLE DUE TO SWELLING AFTER THE SURGERY AND THEY WON’T KNOW FOR SURE IF ITS ALL GONE UNTIL i HAVE ANOTHER ANGIO A YEAR AFTER THE SURGERY
That’s awesome that you don’t have to go through having a craniotomy or anything. I had mostly all embolizations and radiation too, but part of my AVM was really really big and in a hard-to-get-to spot (my brain stem), and in the END I was AVM free, but not before having two hemorrhages. But seriously, if I hadn’t had the radiation beforehand, I probably wouldn’t have lived.
My spinal cord AVM was obliterated with an embolization (yay!), but I still have the spinal cord aneurysm that was embolized at the same time.
I have a lot of deficits from the AVM rupture though that have never gone away, and became a little worse with the embolization.
I have had two embolizations and two gamma-knifes, My avm was 6cm It has been dramatically reduced but not 100% gone, I think i will just have to live with the nidius.
My husband had surgery to remove the AVM. When he had his car accident they said they found a black spot on his brain but did not know what it was. Then four years later it ruptured. The thing is the removal of the AVM disrupted his motor skills on the left side. So maybe the slower procedure is better. He’s lucky to be alive and they wouldn’t have operated if he hadn’t been in good health. He use to walk the Brooklyn Bridge at lunch time. I’d like more information from survivors of AVM’s on whether he will regain more of his motor skills.