Hi! Wanted to share my daughter’s story to see if anyone had similar experiences. We’ve been told her case is extremely rare.
She’s an otherwise healthy 13-year-old. Last fall, she was working out and we thought she tweaked her neck. She developed terrible neck and head pain over the course of 15 minutes. We took her to her pediatrician who insisted it was a pinched nerve in her neck, but sent her for an MRI of her cervical spine, which was the site of worst pain. MRI showed no abnormalities but there was a comment that her braces interfered with the view.
Jumping ahead 7 months…she was doing a handstand and felt her neck spasm. Immediately she developed 10/10 pain in her neck and head. She was shaking and vomiting. We took her to the ER where they refused to do imaging and she was discharged with pain meds. She was still in agony so we tried Urgent Care for stronger pain meds. They gave her some, but they were absolutely no help. Finally, because we just knew this was serious, we drove 45 minutes into Baltimore to Johns Hopkins where she was triaged straight to imaging. A neck CT found a small but bleeding AVM on her spinal cord near C5. After she continued to feel awful they did a head CT and found a subarachnoid bleed from the cervical AVM.
10 days in ICU at JH and she is - thankfully - FINE! Neurologically intact, just dealing with headaches and spinal pain in the aftermath due to the blood irritating nerves. She was discharged and is already back at school.
The next step is an MRI next week to see how healing has progressed. Once inflammation has settled, she will have a 10-hour-long neurosurgery where the team at Johns Hopkins will do a laminectomy to access the AVM, remove it completely, and ideally not paralyze her in the process. I am SO scared about how the surgery will go and also worried about every little symptom in the meantime.
Anyone else go through a similar surgery? I am finding very little information.
I have a AVM on C1. I’ve let neurosurgeon try twice to stabilize it and repair an aneurysm it caused. Two 10½ hour surgeries and both attempts failed. Then I was put on sirilmus (probably spelled wrong) for 12 months to try and shrink then AVM. Not sure why. Anyways, I understand the struggle. Mine was Oct 1,2021. I am almost 46 years old. Five years and no reoccurring bleeds. I have 3 boys, 7, 8 and 13 yrs old. I guess my point is that I put my faith in the Lord. I know Jesus saves me. They had told my wife when i has in ICU that I wouldn’t go home. God has turned mine to a positive. If yall want to know more let me know or any questions. I will be praying for your girl! My name is Cary.
Yes. My AVM was on T5 and after 3 failed attempts I had surgery a lamenectomy at Barrows. Dr Lawton clipped the AVM. I was was 69 at the time and it was during the height of Covid. The AVM had apparently ruptured so essentially my spinal cord had a stroke. So I spent over a year in intensive PT/OT. Today I can walk and do most of the things I did before. Your daughter is young and I’m sure her recovery will be much faster than mine. My heart goes out to you both and I hope all goes well!
You are finding little information because Spinal AVM’S are very rare and only show up on MRI not Xray. I had mine resected at Barrow Neurology in Phoenix in 2010. Your daughter’s is small while mine had grown significantly as i was 50 when i had mine done. Here is what you need to know or ask. Does John Hopkins have the skilled Neurosurgeon to do this? Barrow definitely does. They did remove mine without damaging nerve roots but she probably will develop palsy of the C-5 nerve root which will result in drop foot on the side that is affected by the AVM. They got mine before it bled. Please feel free to reach out to me with any questions or for support.
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I found hope in watching success stories like this one: 17-year-old Ivy tells her Barrow story after her spinal AVM was removed. I had a really large AVF in my neck C1-C7 and it was successfully cured with embolization (14 coils in my right vertebral artery). So far almost a complete recovery…almost two years since the embolization. Lost arm movement and strength right after the procedure but it has come back. Prayer and meditation helped get me through the stress of it all. Also doing lots of rapid eye movement therapy to recover from the anxiety/PTSD of the testing and procedure. Will keep your daughter in my prayers.
I’m truly sorry for everything you and your family are going through. It broke my heart to read about the pain and fear she experienced.
As a fellow patient, I deeply understand how scary and overwhelming the thought of surgery can be. My most recent surgery — a neck surgery — lasted 9 hours, and I had to stay awake during it. (God protect us all from worse.) So I truly understand your fear and anxiety. Waiting, watching every symptom, wondering what comes next — it’s such a heavy burden.
I also have an AVM, located from C3 to C7 in my spinal cord. My doctors told me it’s a very rare condition. I haven’t written my full story here, but if you’d like, you can read more about it on my page.
I sincerely believe that prayer and turning to God is our greatest source of strength. His help is not just a small comfort — it’s a powerful support that carries us through the hardest moments.
I’m praying for your daughter’s complete and speedy recovery. May she return to a happy and healthy life soon. And may God guide the hands of her doctors and bring peace, strength, and comfort to your hearts.
Hi Farmgirl, firstly try stay positive no matter what, this will keep your little girl int he same frame of mind, I’ve been a member here for over 11 years and had a brain AVM so I cannot help much here, but what I did want to say is that John Hopkins is one of the best places for her to be treated globally, and the team there perform miracles daily !, I hope everything turns out fine for your Daughter, welcome to a fantastic community of people that can offer advice based on there own journeys through AVM’s themselves or family members.
So Sorry to hear about your daughters story, very few people have cervical AVM 's my spouse’s is at C-5 C-6 and has been there since it showed for her at age 15 , that’s 50 years ago now! Back then so little was known about how to treat them but she is 56 now and is still living her life, so with all the advances is treatment options We will pray for you and your daughter to have a successful surgery so she never has to worry about it again. Best wishes
My story is different but I want to bring you some hope anyway.
My AVM was located deep in my brain so I had to do proton therapy since surgery was out of option, too risky and it was located too close to my motoric and sensory area of my left side which would risk me to be paralysed and potentially die if it would be a brain haemorraghe.
With all of this, at 19 years old, I was so scared and devastated. In Sweden, we didn’t even have the proton therapy thingy and they would send me to Boston, America but due to Sweden having “free” healthcare it became a moneyquestion and nothing was done. I asked the doctor what I was supposed to do and he told me “Go to university. Stay close to the hospital”.
HENCE my life being threatened every day (if the AVM decided to burst I would drop dead.
So I did what any girl in their 20’s would do.
I left my deskjob at the bank and travelled the world, left my worrying parents and family behind to experience everything. I was put on Lamotrigin/lamictal for the epilepsy I developed due to the AVM and I ended up on a 1000 mg /day dose which made me feel absolutelty nothing. So it was either to start living or wanting to die everyday.
So i actually stopped the medication without permission from the doctors and started to live life to the fullest. And it went great. 3 years later 9 regions. in Sweden bought the same radiation therapy (proton) to Sweden and I was the 5th person to do it. 3 years later I had to make an decision. It didnt look to well. It was either to do radiation therapy again with an 83% chance to get paralyzed in my left side OR there was new research that it could develop during year 4-6. So me, newly inlove with a guy I met in Thailand, all I wanted was to return to the small paradise island, I went with the new research. I couldn’t see a life in a wheelchair.
So here I am. 6 years later declared healed. I hope this gave you some hope and I wish the best for your daughter. She will be in my prayers
Our son also has a spinal avm. His one is surgically untreatable. However he has been treated with mekinist which has proven very effective to reduce the avm.
See article here on his results. Journal of Vascular Anomalies
If they can surgically operate that would be best. But it may grow back.
I’d recommend getting a full genome sequencing done and see if there is any abmormalities.
Btw summary from Mekinist treatment from article. He continues to do well and is remains on low dose mekinist - 0.75mg/day. Look for braf mutation in genetic tests from affected area - general blood test did not show but only through biopsy.
This report is the first to document objective reduction of a CNS AVM following treatment with medical therapy. Importantly, in addition to the angiographic change, the patient had no new neurological signs or symptoms referable to the cord AVM. There are other reports of medical interventions for brain AVMs using doxycycline and bevacizumab,5 though these did not demonstrate reduction in the size or flow of the lesions. There are also reports of spontaneous thrombosis of spinal AVMs particularly following hemorrhage.6,7 We cannot exclude the possibility of such a phenomenon, though would note that the nidus was seen on catheter angiography within days of both hemorrhagic events. With respect to the mechanism of drug action, we noted that all afferent vessels subjectively decreased in size and tortuosity reflecting a reduction in shunt flow and subsequent arterial caliber change. This may suggest that the nidus is the locus of action, an encouraging premise as there is an understandable concern for AVM hemorrhage should the venous outflow be preferentially affected. The authors chose a low dose and the patient experienced minimal side effects during treatment. Future studies will need to evaluate dose effect and duration for both potential primary and adjuvant treatment applications.
Fascinating and exciting! Would love you to carry on telling us how he gets on.
As you might imagine, we have brain, spine and other AVM patients who have been told that no treatment is suitable to reduce their risk back towards a normal level and the one hope we have is that novel approaches become available (but it has been a very distant hope!) To hear of the beginnings of a new approach is fantastically helpful for those for whom the other options are unsuitable.
Do please tell your son’s story as it fills out and remind me to pin it either in the Spinal section or possibly in the AVM101 reference section. I hope it does everything he needs it to do
Hi, all! OP here. I have been meaning to share an update on my daughter’s condition, especially in case someone finds this in the future and is going through something similar.
Her follow-up MRI about 2 months after the bleed showed almost total healing/resolution in her brain. The AVF was tucked behind her spinal cord inside her vertebra and only showed due to unusual circulation of blood in that area. They did another angiogram to plan surgery and found that the most dilated area of the AVM had doubled in size in two months, which was very scary because the goal was to get her to surgery before it burst again.
Thankfully, we made it! She had surgery Aug. 4. It lasted 8 hours and the team at Hopkins (a combined “dream team” with Chief of Pediatric Neurosurgery and Chief of Vascular Medicine) was phenomenal. They cut 5 vertebra to access the AVF, moved her spinal cord, painstakingly untangled the AVF from her C5 nerve roots. They restored the vertebra with titanium plats. She woke up fully neurologically intact aside from some numbness in her right hand, which is now just a numb spot on her right thumb. She had some trouble urinating and walking at first, which was scary for us, but the docs said it was just the shock to her nervous system. She recovered fully over the past three weeks and just started high school yesterday. The only concern now is checking periodically that the AVF does not try to regrow.
She has a scar the entire length of her neck in the back - fortunately she has long hair
Wow, what an incredible journey. Your daughter is so strong, starting high school after all that is amazing. The scar is a badge of courage, and you’ve both shown so much resilience. Wishing her continued healing and strength.
