Problems following avm removal

Hi, this is my first discussion post having just joined, my avm was discovered in my brain in 2009, and treated by gamma knife in 2010, since then however my symptoms have worsened as the avm was feeding an artery which is now not getting enough blood flow. This has caused some brain damage already and doctors don’t expect the feeling in my left hand to come back, I have also had a constant severe headache since December 2013.
Has anyone else had a similar experience? The doctors I have seen seem in no hurry to do anything to fix this, which is incredibly frustrating as I am in constant pain and back up to a 78% of hemorage, which I guess we all find a little frightening.

Sarah, hang in there I know is difficult to do as it is easier to say. I can only tell you that in prayer you are not alone and I will offer Mass and my prayer's for you and your family. Live life and offer your pain as a sacrificed to our Lord Jesus Christ and no matter how bad and cloudy everything around you gets God's will be done as he has not abandoned you at all. I found the strength to keep on fighting in him when my Mother fought with her terrible AVM that finally took her life after 17 months of fighting for her life. Doctors are limited on what they can do. Many are afraid to do anything really for fear of a law suite. All they can do is give you pill after pill and to no avail will only help a little. There for live life as best you can. Your attitude and optimism will reflect on all those whom are around you and they will come to see God through your pain, suffering and love of life. God Bless you.

They put glue in that spot, to try to help it. But I found out that we are a test dummy to find out how to fix it. I found out that Topiramate, and depression med, and metoprolol tartare help with the pain, but you and your doctor got get the right does for your body. It don’t fix it but help you with some of the pain. I know it get hard a lot of times, but I look at it that started to teaching a lot of doctors on it and what it d to the person. What to look for and what to check out. Cause I got to go to the hos. Si much and Doctors don’t know what it is, so I make sure I teach them in this illness. I don’t know if I will make it before they find a way, but with my help it can help thenext person that come after me.

Hello Sarah.

Stay strong!

I too have found out my AVM is recruiting off an artery (I think that's the right way of putting it). I have been given the option of further brain surgery, embolisation or stereotactic radiosurgery. I have already had all three.

Fortunately I don't suffer from any pain so for me it's just the risk factors involved.

Perhaps keep enquiring and pushing to get some action. You cannot continue to be in constant pain. Where abouts are you from? I'm from Britain and the surgeon here has a course of action already planned for me.


I have actually tried topiramate , but it caused insomnia, so I was taken off it, I have since tried amitriptyline which didn’t help , and now I’m on nortriptaline, so far only morphine, oramorph or solpadiene is taken regularly help the pain, bit I try to take as few pain killers as I can, as I do to want to add the secondary headaches from too many painkillers

Thank you for your kind words :slight_smile: I am doing my best to stay positive through all of this :slight_smile:

If I was in your situation, I would definitely seek another doctor/ hospital. I had a craniotomy at Johns Hopkins, dr. Rafael tamargo almost a year ago. AVM removed and aneurysm clipped. Every situation is different, but I would definitely recommend dr. Tamargo.

Good luck. Chilly

Hi Samuel , I’m in Northamptonshire, England, I’m currently waiting for appointments at frenchay hospital in Bristol and London neurology hospital, but they don’t seem to be in any hurry, I have been hospitalised 7 times since December in Kettering , Northampton and Leicester hospitals, due to my risk of bleed, so any abnormal paineand j need to get to a&e quickly. I keep phoning the hospitals, but the only one I’ve had a positive experience from is john radcliffe at oxford , where thankfully I have a wonderful consultant who always reord to my phone messages and helps push for action too, so far it’s looking awfully tempting to see if other countries would be better :frowning:

I too, have a very complex AVM and have had multiple bleeds. 3 years ago, technology and a highly skilled surgeon, removed it. It has plagued me for 38 years. I would deffinitely head to the U.S. and go to and see Dr. Neil Martin. Check him out online. There, he has a You Tube video out that explains so much about the condition. He is tops in the field.
Good luck.

My avm is in my pelvis but from my experience and extensive research with most avms complete ressection is extremely hard to do many times impossible and unfortunately worsening of symptoms is what many people experience. Personally since my attempted wife ressection via a large L incision in my abdomen I have had 4 embolizations because of worsening pain and nausea. These procedures also have not provided any relief I still struggle with numbness pain and tremors in my right leg along with chest back and abdominal pain and many other random symptoms. I am now being refered to pain management but refuse to take and become dependent on narcotics. I don’t know where to go from here many of us don’t but you need to just take it one day at a time and come to us when you need help and to talk. All of us are here to share your experience and help with the extreme emotions and frustration of others who don’t understand. Sadly most of the time I feel our doctors don’t understand the severity of our pain and the obstacles we must encounter every day! I hope you are able to cope with your diagnosis and begin to heal. On bad days when I feel so bad I don’t want to leave the house I tell myself… There is hope for the future, I am a survivor and I will not let this malformation control my life! Best wishes friend

I have a similar issue with headaches. When the Interventional Radiologist did the second round of closing my Spinal AVM with "ONYX" glue the headaches started lightly and have gotten so bad over the last 4 years I have to take Percocet and have Botox shots every 3 to 4 months and it feels as though someone is squeezing my spine at the base of my skull. Pain hurts sooo bad I wanna go to the heavens rather than deal with them.

My doctor was Dr. Bernard Bendok at Northwestern Memorial Hospital in Chicago, IL. I highly recommend him. Here is a video of him speaking about AVM's:

Good luck to you! I had my AVM removed in 2003 and I'm still getting better every day :)


Hi Sarah. I'm so sorry to hear you are suffering so much. How awful for you. I live in Milton Keynes and am also treated at John Radcliffe in Oxford. I have always thought they are wonderful there, although to be honest I don't have much to compare them to as I don't have experience of treatment elsewhere. My AVM is unruptured and hasn't been treated. I am nervous of undergoing treatment in case it makes things worse for me. I really really wish you all the best and hope that someone is able to give you the answers/treatment you desperately need.

Thank you everyone for your kind words, I will begin by speaking to my consultant at oxford, reiterate the pain and see if there might be a way of dealing with the headaches as their own issue?
I just feel so defeated sometimes, one of the doctors at my gp surgery seemed to think I was addicted to painkillers as opposed to in constant pain!

I know this sounds silly, but I was in a bad spot earlier this year as well. On top of my cerebral AVM (no bleed yet- currently being treated) I also have arthritis, a herniated disc, and a pinched nerve. I was in a very bad, and very dark space after I found out how long everything would take. I had a constant headache for years, with severe back pain and migraines that would knock me out for a whole day. What has helped me is, first and foremost, staying POSITIVE.

I know how dark it can be and how hopeless you feel. The answer is not anti-depressants. You must go for walks, read good books, garden, take day trips. Whatever you love to do, make time for it. For me it was gardening and listening to trance type music that helped me relax (white noise channel on Pandora). I also dabble a little in yoga, but due to my limitations it's basically glorified stretching(LOL!). But it helps, I promise!

Discuss with your doctor, but I also started taking a curcumin capsule found at the drug store. Here's a link, but study up on it! This and many other herbs like turmeric are a god-send! And if you ever need someone to talk to, message me or look me up on Facebook! I wish you ALL THE BEST!

Nandi, I am taking those steps as well, lots of walking, reading, both books and getting a head start on the course material for college in September :slight_smile: music helps too. I will definitely look into all the other options you suggest, as aster 7 months I will try anything now, and I mean anything! Any suggestions will be gratefully received and tried!
Thank you :slight_smile:

Hi Sarah.

I too am from Northamptonshire. I am from Wellingborough. Oh, I have never heard of that hospital. Oh wow, that is a lot of hospitalisations! I am under John Radcliffe Hospital and all the time they seem to on the ball and determined to sort me out. Keep going with JRH.

Speak soon,


Not far from me samuel, I’m in desborough, I’ve been on the phone to everyone I’m waiting to see today and had no luck, it seemed as though they are all waiting for another hospital to do something first, which is incredibly frustrating! But they have suggested I get referred to a headache specialist in Northampton, maybe he will actually get in touch!

All in all the only person who seems to get anything done is prof Byrne at JRH who has been brilliant for the last 5 years!