Hello again!
I think you are still wondering too about Sadie’s experience. Her whole story is www.caringbridge.com/sadiesherbondy. Or just go to caring bridge and search her. If you have any more questions, please send me another message. I know you are scared. Take a deep breath, you are going to be okay 
The pain is bad some days after surgery. Some embo’s are more troublesome while others are easy. But you will do great!!!
<<Was it your choice to have it operated on and embos rather than to just monitor it?>>
That's a complex question but yes it was of course my choice whether or not to undergo treatment. The neurosurgery world has rough ways of estimating the chances that an AVM with no prior symptoms or bleeds will cause trouble in the future, and at my age at the time of diagnosis that calculation worked out to roughly 50-50. The younger you are the more likely it is that problem will occur. In my case I sought four opinions from different neurosurgeons at different institutions, and all favored intervention (although one did allow that doing nothing was at least in theory an option.)
<<Were you in a lot of pain after the embos or surgery. Could you drive and do some of your normal activities during the six weeks? Also did you need someone to be with you every moment the first few days?>>
Embos and the actual (craniotomy) surgery very different things. Embos when they go as expected aren't much of a problem. Since they are snaking a catheter through femoral artery (from one's leg) there is a very small incision there that one has to be careful of for a few days, but the bigger hassle is that it typically involves general anesthesia (though docs differ on that) and a few hours of general anesthesia makes some people wobbly for a day or two or three. With an embo they typically keep you overnight in a neuro ICU for observation, but for each of my three embos I was home in time for lunch the next day.
The actual surgery (craniotomy) is a lot more involved - longer procedure and while I was home two days later, the act of doing one of these certainly puts one out of action (work or play) for at least a few weeks. Honestly, though, pain wasn't a major deal (and meds were good) though I think different people have different experiences there. You certainly would benefit from having someone around after these procedures, especially the surgery.
Hope this is helpful.
Hi again so I had my appointment with my neuro surgeon and she gave me all the options and said it is my choice. I am even more confused because she said it is not a high risk lesion and it drains superficially whatever that means. She said my surgery is elective since I have not yet had a bleed. It is so hard whether or not to treat it but I feel like I found it for a reason and do not want to take a chance of it bleeding and causing worse damage. All of your opinions from surgeons said to take it out because of the chance of yours bleeding? I wonder if yours was more at risk? I belong to kaiser and I have heard that they do more preventive than surgery. I am scheduled to get a functional mri to see if my speech is on that side since I am left handed before they do my surgery if I choose to. I have considered gettign a second opinion from Ucsf but my friend works there and showed the chief my scans and had said it would be an ideal place for surgery so part of me feels like I will hear the same thing if I consult with him. Any thoughts. You are so helpful since I know your hadn't bled and you still had it treated and you seem to be doing great which gives me hope.
Same situation with son we chose embo with surgery 2ndhe’s week home he went to wal
Mart with me doc okd lol but as a mom 2-3monthsthat is where i began to see significant
Recovery since 08. He is in college he graduates dec. Thank God
Knowing you ate not alone is the greatest feeling!
Hello Kinder, welcome to this great site. Decisions, decisions, decisions....what a pain they are!! As Trish said, you are the only one who can make the decision....if you feel confident in your surgeon, listen to the options and ask his advice. I didn't have a choice as I had small bleeds that we had no idea was happening, so I had surgery straight up. Every AVM is different, every recovery is different, so listen to your surgeon & your heart! All my very wishes to you and please keep us posted!
Hello again Kinder!
There's no way no know if mine was "more at risk" than yours because there are many factors that determine whether one of these things ruptures and bleeds, and a lot of them are unknowable. The formula one finds in the neurosurgery research literature estimating odds of rupture is based purely on the person's age. I'm going to quote you a few sentences that explains this from a key neurosurgery textbook: "The patient's age is most important in determining the cumulative risk of AVM rupture during the remainder of the patient's life expectancy. Assuming an annual hemorrhage rate of 2 to 4% and an average life expectancy of 70 years, the cumulative risk (in percentage) of AVM rupture may be estimated by the following formula: 105 minus the patient's age in years" (Controversies in Neurological Surgery: Neurovascular Diseases, 2006, page 119). What this means, in simple terms, is that if you assume there is a 2-4% chance it'll blow in each given year, then subtracting your age from 105 gives a rough estimate of chances it will ever blow in the years remaining in a normal life span of 70 years. The younger you are, the more years left, which means more chances it will rupture, so higher % chance of rupture. In my case the formula produced a number around 50 -- a 50% chance it would rupture and a 50% chance it wouldn't if I just left it alone. I don't consider those good odds! ... so I chose surgery.
And keep in mind this formula is really rough and takes into account only age. It doesn't take into account the many other factors docs use to evaluate AVMs. For instance, it is common for neurosurgeons to rate AVMs on what is called the Spetzler-Martin (S-M) scale, which takes into account three factors. First factor: size of AVM (1 point if it's less than 3 cm, 2 points if it's 3-6 cm, and 3 points of it's more than 6 cm). Second factor: it the drainage from it "superficial" (0 points) or "deep" (1 point). Third factor: is it's location in a "noneloquent" area (0 points, isn't near key brain functions) or "eloquent" (1 point - is near key functions). You add up the points to get your AVM's total Spetzler-Martin grade, from 1 to 5. This scale as I understand it isn't used to predict rupture or bleeding specifically; instead it is used to assess the extent to which surgery is indicated and more likely to be successful. It is apparently "easier" to successfully operate and remove AVMs that are smaller, superficially draining, and noneloquent, so those are the features that have lower scores (lower total S-M score is "better" you might say).
Based on what you have written it appears your AVM's S-M score might be 1 point for size (<3 cm) + 0 points for "superficial" + ? points (either 0 or 1) for the eloquent/noneloquent thing. You said you are getting a functional MRI to see if speech is on same side as AVM. I had exactly same issue (though a different test for it). If your speech is not on same side then I'm guessing they would say that your AVM is noneloquent. In any event your S-M grade totals to either 1 or 2 (out of 5), and the standard neurosurgery wisdom seems to be that AVMs with a total grade of 3 or less is a good candidate for surgery in terms of the odds it can be safely and successfully done.
I'm sure this is far more detail than you might think you want or need, but it is important to understand this thing and how the docs think about it. In deciding whether to treat it a person should be thinking about the odds it will cause trouble (repture/bleed) if left untreated, and the likelihood that treating (surgery) will be safe and successful. The age formula gets at the first of these, and the S-M grading scale is more related to the second. All of this info is what the docs use to think about these things (plus many other things like the general health of the patient, her occupation, other factors).
But when all is said and done, you still are left to make a decision based on estimates and odds and uncertainties. Let me quote you another sentence from that neurosurgery textbook section on AVMs that really sums it up: "There is no magic formula to dictate to a physician and surgeon how to proceed in managing a patient." It goes on to point out that surgery for AVMs with total S-M grades of 1, 2 or 3 "by experienced surgeons carries high cure rates and low complication rates." In other words, it tends to go quite well when someone has an AVM with an S-M grade of 3 or less. But of course like everything else in life, good odds are not certainties.
Hopefully this information (take the time to understand it) will help you see why your surgeon is telling you that the surgery is 'elective' and that it's your decision.
If I have one piece of advice for you, it is GET A SECOND OPINION. Absolutely. I strongly urge that you don't skip this step. You said you aren't sure you want or need to because "part of me feels like I will hear the same thing if I consult with him." DO IT ANYWAY. A different surgeon (who should -- or really MUST be in a different hospital or institution than the first one) who tells you the same thing is giving you very important information.
It can, I know, be frustrating that a surgeon -- an expert with all of this knowledge and experience -- is telling you that you (not an expert with no experience!) have to be the one to make this choice. I found it helpful to ask surgeons directly this question: "If it were you ... if you had my AVM with my features, size, location, and if you were my age and in my general physical condition, would YOU choose to have the surgery?" Not all docs asked this question will 'bite' and respond directly, and there's not much point asking anyone but a neurosurgeon who does AVMs, but you might find that an answer from your neurosurgeon will be helpful.
As before, good luck figuring out next step. Sorry this is so lengthy but it's striking that yours seems quite similar to mine so I wanted to share what I have learned. Learn what you can, and get a second opinion. Hang in there.
Kinder,...
May I invite you to join my group here on the AVM Survivor site,...
http://www.avmsurvivors.org/group/ruptured-avm-brain-bleed-un-treated
We would welcome your comments, discussions, suggestions and your input.
I chose to have surgery to remove my AVM. Having an embolization and surgery wasn't an option for me because of the location of the AVM. I am 3 weeks post op today and doing pretty well. I had some pain but am gradually increasing my activities and energy level is increasing while pain is decreasing. My neurosurgeon explained that having another bleed was a risk for the rest of my life if I didn't have the surgery. I decided on surgery because I knew I couldn't live with that fear and consequences of another bleed. Take Care!!
Welcome to our fmily Kinder and am sorry to hear of your recent AVM diagnosis. While I am not able to help with answers to your questions, I am able to relate to you feeling overwhelmed which is so very normal! I didn't realize I had an AVM until I survived a rupture last February. They did an emergency embolization on me the night of my bleed and was scheduled for surgery 2 weeks later after the brain swelling subsided a bit as a result of my bleed. The good news is that when I went down for my pre-op the day before my scheduled surgery, they were able to tell me that the embo treated 85% of my AVM and the surgery was cancelled - YAYYYY!. They treated the residual 15% of my AVM with a stereotatic radiation procedure called CyberKnife and I am going in for a follow-up angiogram next month to see the current state of this little creature...my hopes are that they will be able to tell me that it has been completely obliterated!!! Hang in there and good luck at your meeting with your doctor and ask as many questions as they come to mind!
/Michele
Hi Kinder...hope you got my reply a few weeks ago...i was forced to have surgery due to a bleed and if the doctors thinks its safe then i would say talk to your loved ones and go for it. Its scary of course but others out there with AVMs dont even have that option at all. So take it by the neck and bring it on...keep us posted & God bless
BB I can't begin to tell you how helpful you have been. It really helps me to understand what this is all about. I know I will get through this and will be helping other people like you are helping me in the future. You are truly an inspiration for many people finding out that they have an avm. I'll keep you updated.
Welcome kinder! I did not know I had an avm until it bled and I had a stroke. I had a craniotomy in may 2010 and would do it again. I still have MRA’s every 6 months as I get panicked when I have bad migraines but overall I have been very fortunate! Feel free to contact me if you have any questions! Thanks, Brooke
I believe that it is a good idea for the operation, I had 7 AVM's removed from my left frontal lobe 6 years ago and I am doing great, if you need support we are all here for you, make sure your doctor is experience and you'll do great, think positive and never give up.
Mine is deep right side temp. lobe. I have surgery 7 hours later! thank god!!! im good went back to work 5 weeks later as a fulltime firfighter. Im praying for the best.
Thank you for your good thoughts.What was the recovery like after surgery in the hopspital and after? Thank you for any information. I have an embo on June 4th and surgery on June 7th. Thats great to hear that your doing great!
hi, i had radiation about five years ago and i hear it works great for many people,it didnt do anything for me,the avm stayed the same size and i just had a very badbleed and had a shunt placed in the brain to my stomach.im about to have my avm removed on the forth, they are going to glue it and three days later go in and remove it,ill be in the hospital for a week after then home! the radiation works greatfor many people, ive seen it do miracles:0 ) but this little booga is a bit tough and didnt work withit ,,so we will glue it and then remove it!,by the grace of god all will go well,just had a major brain bleed this past christmas and i pray i dont bleed with the avm..caroline