Hello, I’m so glad I found a place where I can read about other people’s success stories that have AVM’s-they seem so rare and i feel so alone in this crazy AVM journey. Long story short, I was diagnosed with 2 dura AVM’s. I’ve had 2 embolizationsonly one was successful and a styloidectomy/jugular vein decompression. My 2nd AVM is requiring a craniotomy in 10 days and I’m a nervous wreck! So scared of dying or ending up in a nursing home. I have 2 new grandbabies that mean the world to me and I want to live so badly! I am 62 and both of my parents died in their early 60’s. It’s so reassuring to read your survival stories and get hope.
Hello and welcome to the group. I can say it’s perfectly normal to be nervous when getting ready for craniotomy. I was at age 10 when I had it done and was very nervous. The only problem you may have is after surgery I was very tiered and slept for 2 days. Best of luck and if any questions just ask.
Hi. It’s great you found us and that you can see stories of successful treatment. I’m lucky that I’ve managed to have my DAVF treated with just an embolization so far (and like you, I don’t fancy a craniotomy). However, you’re going to be in great hands with the best technology and capabilities of the 21st century. If ever there was a time to need this type of surgery, this year must be better than any time past.
Wishing you all the best,
Terrified? I can’t think why (Joke) I certainly was. “What? you’re going to open my skull?..” that’s my brain, that’s what makes me ‘me’. That is terrifying so personally I’d say that’s pretty damn normal BUT the brain has differing functions, the main functions are primarily protected deep within the brain. The dura is around the outside of the brain matter and keeps the cerebral spinal fluid(CFS) around the brain. The CFS has a few roles, one is to help nourish the brain, the other is to cushion the brain from hitting the inside of your skull when you move your head. A bit like a shock absorber. So in order we have the brain, then CFS outside that, then Dura and then skull.
Although my condition is not AVM related, the surgeons have needed to go right to the centre of my brain, to the subarachnoid space, so that’s through all of the outer layers and the grey matter. I won’t say that things are good for me but as they only need to get to the outer layers for your procedure there is less likelihood of lasting impacts. By no means am I minimising your concerns, not at all, any surgery can have risks and more so brain surgery but as it’s not as invasive as some operations you have a better recovery rate. I agree with John_O tiredness may be an issue to be managed for a while but also agree with DickD that you have technology on your side.
Merl from the Moderator Support Team
Thank you for your encouragement!
Hello and welcome. We are all here for you. I had a DAVM too in the right occipital. Embolization done a month before the craniotomy…August 20th will be the 1 year anniversary of my craniotomy. Mine hadn’t ruptured yet but it was big and ready to burst, which would have killed me. I am 57 now so a bit older than most at diagnosis, like you. I had a great surgeon and his staff, was in the hospital only 2 days. Slept almost continuously for 1 1/2 days after surgery, then had to have naps every day for about 2 months afterwards as I found I got tired more easily. My brain was healing so that was normal! No more need for naps now, I am completely back to normal with NO changes in how I was before the surgery except no more optical migraines.
I am sure your outcome will be similar to mine Stellgma. I was scared before I did the research though. Maybe it helped that I had total confidence in my surgeon and his staff and the hospital as I had researched them and the procedure itself so I KNEW what was going to be done to me. Took the mystery and also most of the fear away. But that’s me.
I will be thinking of and praying for you. You have a lot to live for with 2 new grandbabies (congrats BTW).
Keep in touch please.
I know its easier said than done but you just need to stay positive and keep your strength and faith up at all times… As you mentioned there are many, many success stories here and the feelings you have are normal and I have been there myself and can assure you that is exactly the thoughts I had cross my mind, however I am here to tell my story and after 7 years + i will continue to share it with ppl such as yourself so you to can get through this time in your life… I never found this place until after my experience so I had limited knowledge of what AVM’s were etc and felt very lonely… Please keep us posted on how you go and keep in touch… God bless!
I may be of no help since my craniotomy was an emergency one but I don’t even remember any of it. They induced me in a coma to let the swelling go down and was highly medicated and it was done post 2nd ruptured and afterwards they also did embolization since I had 2avms and 4 aneurysms. Just know you’ Probably be very medicated so pain will most likely be nonexistent and you probably won’t remember anything. I don’t even remember waking up from my coma just being transfered to inpatient rehab weeks later. But I completely understand what you are feeling. I was originally going to get a craniotomy but that surgeon backed out last second but I remember being scared out of my mind then… trust your surgeon unless he/she looks unsure
Thank you so much for your encouragement and sharing your experience!
Thank you so much! The kind encouragement and great words of advice are all so helpful in dealing with my upcoming surgery!
I found out I had an AVM almost 40 years ago, and I could not find ANYONE w/an AVM for DECADES! Alone, YES, I remember that feeling. I just pushed forward, moved ahead and live my life quite FINE. Got my AVM fixed well in 1990. ‘Positive thinking’, ALWAYS!
Just had my ABM surgically fixed at Mayo Clinic hospital on Thursday. Went well except for bloodclot. So happy to be alive!
Great to hear it went well! Take care and wishing the best in your recovery, John
I’m glad it went well!
just remember to give your brain some rest because you’ll be tired a lot… and don’t feel guilty about sleeping, your brain will need it! Stay strong, we are all here to support you.
Yeah. Treat yourself well; have others treat you well and get help for anything!
You are a warrior! Telling people you had a massive craniotomy to remove an AVM is the BEST icebreaker ever. I am 23 years old and had mine removed 1 year ago. Hoping you have a speedy recovery!
I am very happy your surgery went well! I agree with the others: sleep when you need to with no apologies, your brain is healing. Tell people when they ask, many don’t know about AVMs so I educate people when they ask me. You would not believe the response I get sometimes when I tell my story. Your scar from the surgery is the mark of a survivor, wear it proudly.
I wish you a smooth, speedy recovery. Enjoy those grandbabies, it’s a great day to be alive!
Thank you!!! I am very grateful to be alive and each day seems to be a little less challenging.
St, look at your SUPPORT here for you! LOVE IT!!