Cervical Spinal AVM (C4 - 7)

Good day,

My husband has been diagnosed with a Cervical Spinal Avm on the 14th of March 2017. He was admitted to hospital due to severe pain in the Neck and Head (Throbbing) and muscle spasms only after a MRI did they pick up he had a AVM. They have done a Spinal Angiogram and the doctor confirmed that the AVM is located inside his spine which will make surgery very risky. He has been discharged from hospital for now whilst the Neurosurgeons decide what the best route is to take. My question is he has had these episodes 7 times in the past, where he presents with a extreme headache and nausea and vomiting and then after a week or so he is completely fine. He has no neurological deficits. Has anyone also experienced the same type of symptoms? Has anyone had embolisation for a Cervical Spine AVM that is located inside the spine or is this considered to dangerous?

Elrike,

Welcome to AVM Survivors! I see you’ve found the Spinal AVM category and we seem to have several current members with spinal AVMS, so I hope you’ll be able to find some support. Equally well done for introducing your story.

Have a look round the spinal group, also have a look under Symptoms and Treatment perhaps, or use the grey magnifying glass to search for old and current conversations on the subjects you need.

I’m sure we will have people who are busy logging in who have some experience to share and some older resources that will be helpful too.

Very best wishes,

Richard

I would suggest sending the MRI films and Angiogram pictures to Barrow Neurological institute , they will give second opinion for $100. My 10 year old daughter had AVM at C7. She had surgery at Barrow by Dr Spetzler. With Gods grace my daughter is doing good now. Did your husband’s AVM bleed when he got those symptoms like headache , neck pain , vomiting. My daughter had exact same symptoms but it had happened only once and she had the bleeding.

Hi, thank you for your response, We live in South Africa so travel to Barrow will not be possible, I may still request a second opinion from them though.
The Doctors did mention a bleed so I guess it must have bled. We are waiting on the Neurointerventionist to get back to us with a possible way forward. Was your daughter’s AVM also inside the spine? He has no neurological deficits from the bleed and has recovered completely, was this the case for your daughter as well? Except for the intense headache for about 5 days nothing else seemed wrong which does not really coincide with any other AVM stories I have came across.

I am so glad your daughter is doing well, may GOD continue to bless her!!

Yes, my daughter also did not have any other neurological symptoms. With bleeding she had intense pain for 2 days and then it was normal. It is called subarchanoid bleeding. I think your husband also had same thing. My daughter’s AVM, part of it was inside the spinal cord and part of it was outside the card. As my daughter is very young, doctors suggested removing it so we went with the surgery.

Please let me know if any questions.

Hi Elrike
I have a cervical spinal avm inside my spinal cord too, c5 to c7. Have only recently been told its inoperable due to the complexity
Of multiple feeder veins and aneurysms. Have had numerous neurological symptoms for years but only diagnosed in December 2015. Happy to answer any questions if I can xx

Hi Mandaayr, have you ever had a bleed?

The Doctors in SA is not very experiences with regards to AVM’s.

Hi Elrike

I had a suspected bleed in November. Sudden onset of a terrible painful headache then some severe back pain and difficulty when walking. These symptoms started to reduce over a period of around 7-10days. have still to get my MRI to confirm this and also give some idea of a prognosis.

Amanda

Hi everyone
Mu brother has cervical spinal avm too and because we didnt know it is too serious he had the surgery 3 months ago. A doctor told me since he have not had any improvement he is not going to walk again. Is he right? Can we conclude that the nerves are supposed to improve just in the first two months?
A friend told me i can ask an american doctor about his condition. Do you know how i can do it though i am an iranian person?
Thanks and i will pray for everyone, please pray for my brother

Hi Zahra1988

My sincere apologies for my late response. I am in the U.K. So hopefully one of our American group members may help with some answers for you and your brother. There are different people on here that have had successful surgery and over time have seen improvement. I cannot say what path your brother is on but please accept my prayers and thought for your brother and family xxamanda

Hi Amanda,

We have now also been told that they will not operate due to complexity and risk of possible SCI if they to intervene, also no embolization.

Did the Doctors perhaps give you any advise, tips what to do not to do? My husband has terrible pain in his right shoulder and arm, we don’t know if it is related to his AVM or not. We are still so unsure.

Do you just continue with life as normal? We are not sure what to do.

Thanks
Elrike

Hi ElrikeI am sorry to hear that they are unable to operate, however, my consultant has said that "conservative management and just monitoring the situation is a safer option. I seem to have random aches and pains too that fluctuate at times, especially my neck and lower back. My consultant advised I take a step back from frontline nursing so the NHS, who I work for has found me a temporary role with less risk. I continue to work full time but intend to reduce my hours as I am very fatigued at times. I am only just try I g to introduce exercise back into my routine as i panicked a bit after my diagnosis. Doctor recommended keeping my blood pressure down, no heavy strain or push and pull. No sports Involving head movements and basically just try not to be stressed out. Yes many of the symptoms can be impacting on how I live my life, but luckily only a few are there all the time, the rest fluctuate. I manage my pain to some degree with gabapentin and amitriptyline helps me sleep. Some days are a struggle and it’s difficult as others cannot see so may not fully understand the illness as it’s so rare but I try to remain positive. I have my MRI with contrast this month so this will be an idea if there are any changes in the AVM.Best wishes to you both Amanda :grin: