I am new to this site and they just found my avm. I was wondering if most people get them treated by embolization and then surgery or other ways. I am meeting with my neurosurgeon in a couple of weeks and they said I will be most likely having an embo and then surgery the following day is that normal porocedure?Also what is the recovery like after surgery?Thank you so much for any info I am a little overwhelmed.
I did a search on here for you…
http://www.avmsurvivors.org/main/search/search?q=Embolization+and+surgery
Yikes 116 pages popped up. From what I read on here…every recovery is different because every AVM is different.
It is normal to be overwhelmed. My best advice…make certain your surgeon has a ton of experience in dealing with AVMs!
Hi there, From what I understand from my neuro smaller avm's are often more likely to cause troubles so are best to be treated. My avm is 3cm and on my left parietal lobe, it is inoperable and I am due to have stereotactic radiosurgery soon. Sorry unsure about embo as it was not given as an option for me, as for feeling overwhelmed, most of us here have felt like that at some stage, it is not a nice feeling knowing there is something wrong with your brain! On the upside, it is fixable!! Best of luck to you :))
Welcome...i to also had my AVM located on the front right hand side of my brain and had no choice but to have it removed. Its a long journey to recovery but its hard to say until a neuro gives you all the info upon consultation. Wish you the best of luck and God bless....keep us posted!
gotta agree....mine was small and after 1 month i found out i had it....i had a bleed! :(
Welcome Kinder,
You are only a couple of long golf shots away from Stanford, which is one of the top AVM places in the country!
They is seldom 'one' preferred treatment for an AVM as they all seem enough different to warrant different treatment routines.
Normally (I think), if they do an embo, they wait a week or so to do followon embos, but its possible they only wait one day to do surgery. For us, recovery from an embo was being very tired on Day 2, mainly due to not getting an rest in ICU with all the noise/commotion. We usually slept all Day 2 afternoon and part of Day 3. Then 1/2 day venture out on Day 4. Day 5 and on--normal activity.
Recovery from surgery was slower. Normally, not a lot of pain, other than headache. Plan on resting every day for a long time, and don't push yourself.
Hope this helps.
Ron, KS
Welcome to the site Kinder. I know you must be feeling overwhelmed. Like Ron said, there are often several different options for treatment. Definitely consider getting several opinions from several neurosurgeons. My AVM bled before I knew I had it which caused lots of permanent damage. My surgeon believes he would have been able to remove the AVM successfully without much damage, because of where mine was located. If your surgeons feel confident they can successfully remove your AVM I would opt for that route. Ultimately no one can make that decision but you. The most important thing is feeling confident in your team of doctors. Best of luck to you!
I echo, Ron...Stanford is so close! :) (thumbs up!)
http://neurosurgery.stanford.edu/patient_care/cerebrovascular.html
Thoughts and prayers are with you.Let the journey of healing begin. Sounds like you have a neurosurgeon that nows this disease..This website will support you day in and day out. So much information.Blessing to you..and understand healing takes time, support, patience..
Crazy to see that size and location :) My 10 year old daughter is 4 weeks and 4 days post op from her craniotomy to remove her AVM that was the same size and location as yours!! She's doing GREAT!!! Please email me if you want to chat at all. Take care!
Thank you so much for ur email. Did they have to remove it or was it your choice? What has the recovery been like. Do they usually have the consult and do surgery pretty close after?
Thank you so much for your kind and helpful email. I am scared but I feel somewhat blessed they found it so like you said Ithe best choice would be to take it out. Is that what most people do if it is possible to take out?
Thank you. It is amazing how supportive you all are.
Hi tawnya, Thank you for your nice message. I wasn’t sure if this was your email. I’m happy to hear your daughter is doing good I am pretty scared but I am grateful that they found it before a bleed. Would you recommend still having it removed if it hasn’t bled or given me problems? What’s the recovery like
Hey hey..I had crani for my large AVM 5 months ago - it was the best decision I ever made. Due to the complexity and the many blood-sufficient feeders for important brain-tissue, I couldnt even have an embo. directly after the surgery i struggled a lot with my decision,coz i had some issues- more psychically then physically - but now 5 months later I am doing great, I feel almost like before, some things are even better and I am so happy that its gone...- so talk a lot to ur neurologist and neurosurgeons and stay strong hunny, u´re a survivor. Take care, things will improve.
Hi
I found out last year I have a Left Temporal 3cm AVM and have the choice of doing nothing, Gamma knife or Surgery and am in the process of deciding but as I currently have very little side effects I may leave alone.Whatever I decide the thought that it could bleed is always there which is a scary thought.#
Take Care
Daniella
I'm also facing a similar question w/ regards to treatments. I have a 1cm avm in my right frontal lobe, and I've been considering whether I should just leave it alone and try alternative methods. I'd prefer non-invasive treatments, as I've had surgery before for another condition and recovering & physical therapy were challenging - and that was before I had my kids.
Kinder,
Your situation sounds not terribly different from what I went through in late 2009 and early 2010, a right temporal lobe AVM of about 3 cm found incidentally, no symptoms (then or ever). Found it late November, sought opinions in December, had three embolizations in Jan. and Feb., and then a successful craniotomy to wrap it up in early March. I chronicled the whole adventure here: http://www.brucebarry.net/avm/, and through that you can get a sense of how the whole thing went from diagnosis to recovery. I agree with the other person who replied to say get a neurosurgeon who has done lots of these. Is it normal to have surgery a day after embo? My experience from seeking opinions from multiple docs was that some like to wait longer than others. The guy who did mine preferred to wait at least a week or two following the final embo to do the surgery. Best of luck to you ... this ordeal is manageable. Hang in there and take the time to make good decisions.
Thank you so much for your info and your blogs it was very helpful! Was it your choice to have it operated on and embos rather than to just monitor it. I feel like I just want it dealt with and over but I am just curious. 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?
Thank you so much for your info and your blogs it was very helpful! Was it your choice to have it operated on and embos rather than to just monitor it. I feel like I just want it dealt with and over but I am just curious. 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?