In need of advice/someone to talk to about my AVM

I was diagnosed with a thoracic AVM. I have one of the best doctors telling me i need surgery and that he may be able to fix me, yet NO other doctor can confirm his diagnosis. I’m in terrible pain in my upper right back for almost a year now, as well as leg weakness and sometimes it shoots into my arms. If I get the surgery I am at risk of making it worse because I have components of a chronic pain syndrome, which means anything like surgery or a trauma could be detrimental. However, on a random chance this doctor is right and all the others aren’t, this could save me and give me back my life. I’m only a teenager and Im desperate for help. Please reach out if you think you can offer some helpful advice, or if you have gone through something similar. I dont know if i should get the surgery or not, or which doctor is correct.

Does your doctor just “think” you have an AVM or has it been determined through testing? There shouldn’t be an argument over whether an avm exists or not. Until it shows up on an mri/mra or angiogram I would be skeptical.

You need to see a neurosurgeon who does spinal surgeries and get an MRI of your spine with contrast dye and it will show up and there are two options if it is an AVM. Emobolization which is non invasive which did not work for me or Open surgery which involved opening up the neck to get to the spine. I am a senior woman and my symptons were bad from the start and I went to family Doctor etc and also an emergency room hospital where they couldn’t diagnosis it. Finally I called an ambulance told them my symptons and they sent me to a trauma hospital and took an MRI of my spine and diagnosed me right away and a wonderful Neurosurgeon came and saw me the next morning. You need to get diagnosed by a neurologist/neurosurgeon. In my case I either got the surgery or I wouldn’t be typing this right now so there was no choice in my case but you really need to be diagnosed by a competent neurologist/neurosurgeon and have an MRI done of your spine.

Hi Jenny,
Thank you for getting back to me. I’m in an interesting spot. I got a specially performed MRA to show the AVM and numerous scans. Opinions are differing in how they are being read. One doctor says he clearly sees the avm, and i can see it too, and another doctor says nothing is there. I had an angiogram done, and it came back clear. However, the doctor said that it was useless because the specific kind of AVM I have is so rare (less than 6,000 people in the u.s have it) that it doesn’t show up on an angiogram. I’m definitely falling through the cracks, and it feels like i’m even losing myself, if that makes sense. It’s hard to pick which doctor to go with, but i’ve tried EVERYTHING else except surgery. Do you think it is possible for an avm to not show up on an angiogram but still appear on the MRA, like my doctor said? I genuinely appreciate you getting back to me, it means a lot:)

All I can suggest is going to emergency with your symptoms and take it from there. You need to stick with one doctor/specialist. All the best.

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It took 5 years to find and diagnose my avm. Mine was neurological; yours could be a whole different story. I had many tests. Nothing showed up on CT scans and the first MRI results were not conclusive. The angiogram was the clicher; the avm was too obvious to ignore. Still, I was put on a “to call” list by the referred neurologist who didn’t seem unduly concerned. Until I had a brain bleed. That’s when my husband had had enough. He contacted a top neurosurgeon in Vancouver and told him he would camp on his door step until he saw me. It worked. One look at me, and the the doctor operated immediately. Saved my life. It seems that it takes a crisis before you are taken seriously. I know what you mean by losing yourself…I had given up entirely. I hope you never reach that point. Sometimes you have to fight and make a scene to be taken seriously. If you have confidence in your doctors, go with their advice. If even slightly hesitant, get another opinion. It’s tough and it shouldn’t have to be like that, but it is. I’m just thankful it worked for me. My neurosurgeon was Dr. Haw at Vancouver General Hospital in Vancouver Canada, affiliated with University of BC research hospital. They are currently studying my case and writing a paper for publication on it. Good luck to you.

Other Docs may not be able to confirm your diagnosis because they aren’t familiar with AVMs. Are other docs neurosurgeons? Thoracic AVMs are a rare animal. I had surgery in February for AVM (T11-L2). If you wait, it could force you to have emergency surgery, as happened to me, except I wasn’t diagnosed until then. I was in a critical and poor neurological status at that time and did not have a choice. My leg weakness had progressed to falling. My recovery has been slow but I am now going in the right direction. Had I been given a choice to have surgery BEFORE I was so critical, I would have said YES IN A HEARTBEAT! I am 55 year old and trying to regain my life back. I hope this helps you. Let me know if I can answer any other questions. Prayers to you…

Interventional Radiologist was the answer for me. He went in through the femoral artery mapped the AVM at T3 through C3 and he went in a second time and glue it shut with Onyx glue. He is here in Tucson, Arizona.

Yes Angiogram is best performed by Interventional Radiologist. Go to a place where they perform 3D or 4D angiogram.

I too had a thoracic AVM T9-T12. I had surgery on March 14, 2017–laminectomy and AVM removal. Post op angoigram showed the AVM completely gone. Before the surgery I had weakness in my right leg with two episodes of extreem weakness and tingling from hip to foot. After surgery I couldn’t move my right leg at all. Left leg had numbness and tingling to varying degrees but not my whole leg. The next day I could move my right thigh a tiny bit and it took two weeks before I could move my foot even the tiniest bit. I was in the hospital for 3 weeks and have been out now for 4 weeks. I am making progress, but it’s slow. I still have urinary retention but I can go on my own but not completely so I have to empty with a self-cath. I walk with a cane now, but my right leg feels like it is soooo heavy and it also feels like a tree trunk… it is really hard to describe to people what I am feeling. The doc told me that if I had left the AVM I would have eventually been paralyzed from the waist down and I would have been high risk for a stroke if the AVM burst. I try to stay positive and I keep working hard doing exercises as often as I feel able and I go to PT 3x a week. I learned while in in-patient rehab that there are so many suffering–I pray for all those afflicted.

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Hello Survivor,

yes it seems we go the same way. Together but global. My intensive months have been oct 2012 - june 2013. After nearly 5 years (and pulomanry embolism, deep vein thrombosis caused of the para, hernia caused of the many angios) I am AVM free (so the last check). But long way now. Bowel and bladder are the biggest problems for the all day life. Seeing improvements, many little steps. My family and friends tell me about seeing improvements with walking. But in my body I feel the deep deep problems, invisible problems for the others.

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Joanne,

Just keep looking forward. I was in a wheelchair a year ago and now walk with a walker. It’s all baby steps with these spinal AVMs. My doctor told me that it could take a year or 2 before I cap on my rehab. The first 6 months I made huge gains, since then it has been slower but still showing progress. Hang in there and give yourself time to heal.

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