Hi, Ive been diagnosed with a AVM Feb 2016, I suffered only from pulsitis tinnitus In my right ear, I had MRI and they discovered a AVM , it’s front lobe , they say it’s grade II which is fine for surgery also it’s superficial and non eloquent, which basically means it’s on the surface of the brain and not deep. I’ve been told it’s easy to get to. I’ve agreed to surgery for treatment, there going to do embolisation first then surgery. It’s too big for radiology, I’m very worried about surgery my pre op is April this year then the other treatments are in May. Any advise on post op, as I’m very worried about it.
Maxine,
Hi. Welcome to the site. I hope you’ll find some people here who can help you understand what this is all about.
The post you replied to is a couple or three years old, so I hope you might get a reply but I’ve moved you out into your own thread, so current members will see your post and contribute.
I’m off for an embolization next week and headed for my pre-op today, so i’ll be able to help with that stage of your treatment.
Best wishes,
Richard
1 Like
Hi Maxine, My AVM was what they classed as superficial also in my right temporal lobe and near the surface also, I wasn’t given a choice in treatments my surgeon just said the best treatment for you is surgery, I had already gone through surgery at that time due to the AVM bleeding causing a brain haemorrhage. So I knew what to expect. My advice for pre op is just know and be totally confident that you WILL be fine !, Post op my advice is sleep and rest as much as you can even if this means sleeping during the day and when people are visiting, Just get as much rest as you can. My AVM removal surgery went great there were complications during the process which meant instead of taking 4 hours it took 10 !, But I was out so didn’t matter to me lol !, This did make my family worry more, And I woke and felt fine after it, was in hospital for 1 week in total and back to work 8 weeks later !. (Desk job so not too bad) I found that everything was easier when I had slept well, rest is key to recovery and hope you have the chance to get as much as I did. Take care and hope everything goes well.
Martin
Pre-op today and embolization operation in about a week. That is me, I am just lucky to have a massive AVM on my left leg quadracept…that my surgeon said might take years of procedures to just manage!
Well, good luck, Rob. Extremity AVMS seem to be rotters to get rid of / manage, so your surgeon is being honest with you but very best wishes for your op next week.
I’m not sure we know what I’ve got, as it feels much more extensive to me than the last time we took pictures of it in September, so I might be in for a longer haul, too.
What can we do but stick together? There is strength in many fine strands, bound together. We’ll get there.
Richard
Thanks Richard , good luck with it
Is this a good way to contact you? Sorry, I am kinda new her…second surgery will be completed by this time in a week.
Rob,
To reply in a topic is public. If you want to write more privately to an individual, click on their icon and then select “Message”. You have to add a title for the message; other than that it looks about the same.
Messages appear back in your Inbox, accessed via your icon.
Hope that helps,
Richard
Hi Maxine,
My AVM sounds very similar to yours. My is unruptured and also on my Frontal Lobe. Mine is a grade 1 so embolization wasn’t needed before surgery. I had my craniotomy on DEC 1, 2016 at Mayo Clinic. I was in surgery for about 8 1/2 hours and unfortunately they weren’t able to get the entire AVM as it turned out to be a little more complicated than they thought. Amazingly though, after surgery I went to ICU for less than 24 hrs, then a regular room for less than 24 hrs, then discharged. I was amazed at how good I felt so quickly. Off pain meds the 2nd day home. Driving after a week. Very little pain when they took the staples out. God is Great!
I returned to Mayo in Jan to have Gamma Knife surgery to hopefully get the rest of it. Give your worries to God. He will take care of you!
1 Like