Spinal AVM: how do you cope with symptoms?

Hi there just looking to see how others cope with their symptoms if they have a Spinal AVM (in neck) Thanks

Hello Mandaayr, and welcome to the community. I’m sure some of your fellow members will reach out to you, but in the meanwhile, you might like to try our search feature just to the left of the “hamburger” icon near your avatar (near upper right). A search for “spinal symptoms” got me many hits, some of which had bits of advice for coping. Once you’ve had a look at those threads, you could comment on one of them to alert the people on that thread to your question. They will be notified of your post.

Again, welcome.


PS I “tweaked” your subject line to draw more attention to your question. Hope you don’t mind.

Thats no problem thank you. This forum thing is all new to me so appreciate the support.Manda

Hello Mandaayr,

hm, after 5 years living with AVM and the damages the AVM left in my body: The things like incomplete SCI or numbness (Brown Sequard Syndrom), or as a sideeffect in my bio: pulmonary embolism after DVT: All this things are a part of my daily life. And it is working fine. Cause you learn to manage your everyday. The things have to accept you as you are. Its not very difficult, the time will help you. For me its just hard to cope with the bladder and bowel issues. But I hope every day and know: There is now time window, no final time border, that closes all the chances for the future. Best for you !

Hi there! managing symptoms is an all day task, but you adapt your life around it. I had a resectioning of my cord last year. I have feeders from L1 to t12 so it was massive. I had to learn to walk and do everything again. last year at this time I was in rehab. Now I walk with a straight can. Around the house I do not use the cane at all. I have built up my strength and can do the elliptical for over 30 minutes! I do have to hold on because my balance is terrible
If you have spasms, mine are server in my legs, then botox is a miracle. Also talk with a professional, asap don’t let depression sink in. I do take wellburtin daily and it really made a difference. Do not sit around and be sad. Adapt your life and push yourself. I may not be able to feel anything below the waste, but that has not stopped my from walking, working full time and finding new hobbies to replace my very athletic lifestyle. Like Michael6 my bladder is an issue. I can’t feel when I have to go, so you get on a schedule and never pass up a bathroom just in case. Most important, stay positive and surround yourself with positive people!

After thoracic laminectomy & disconnection of spinal dural arteriovenous fistula (DAVF) surgery on 29th Oct 2015, all medical problems that I have been suffering since many years are begin to disappear. I can walk again…not perfect, but good enough to go shopping and do my daily life. There are good and bad days. On good days I can walk 2 Km non stop and on bad days only 500 meters. Now 2 years after the laminectomy I still don’t know what is influencing the good and bad days. I know if it is a bad or good day when I woke up. On a bad days the pin & needles in my legs are very strong and both legs are stiff and balance is bad. On good days the pin & needles are weak and my legs can move freely with a better balance when walking. My experience so far is that we need to stay positive and go on with our daily live, holidays, travel as good as we can cope with our disability.

The list of issues in my body that started approx. 7 years ago is quite long and slowly getting worst:

  • Sometimes got knee pain when going up/down stairs – no problems diagnosed with X-rays of the knee or leg. All cartilage and mechanical functions are OK and no arthritis.
  • Difficulties to pass urine – diagnosed by Urology, nothing wrong with prostate or urinary track.
  • Frequent constipation since past 2 years – Colonoscopy and Endoscopy proved nothing wrong with my digestive system or colon.
  • Can only walk for a distance of 7 Km since Oct 2014 – There after my legs are just weak and cannot move, but no pain. MRI of lower back and hips is showing nothing wrong.
  • From January 2015 I can only walk 5 Km, also starting to get pins and needles in booth legs and from May 2015 only 3 Km. Pins & needles feeling in my foot till knee. Sometimes feeling like have socks on. The doctors said that they cannot diagnose anything wrong and I have to just live with it because I am getting older.
  • Then I went in June 2015 on a one month holiday to Europe and after returning from holidays I can only walk 1 Km and the pins and needles was than from legs to hips. I then consulted a different neurologist team and finally they discovered that the electrical signal flows from my brain to my legs are slow (Just like a slow internet connection). In September 2015 they decided to do an MRI of my brain and the whole spine. They discovered that the spine cord is swollen between T2 and T10. Inside the dura of my spine cord near T10 there is a connection between an artery and a vine (DAVF). The DAVF is causing progressive thoracic myelopathy. A couple of weeks before the surgery I could only walk slowly from my bedroom to the kitchen and not further. I have to hold on to furniture or the walls.

Hi Michael6 thank you for your reply and kind words
It just seems sometime that all these “active” symptoms driving me crazy are invisible to everyone else, apart from when I loss balance and stumble or walk funny because my leg feels like cement. I too find the bowel problems very distressing.

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Hi Kathleen1 thank you for your reply
It is so positive for me to hear from people like yourself and Michael6 how everyone is managing to cope with all different symptoms. I seen a specialist on Monday 27th and unfortunately my spinal AVM (c5-c7) is worse than I had hoped and does not look like they can operate because the nidus is in my spinal cord. He suggested that I get another MRI to compare with a year ago to see what changes so can help wth my prognosis. Very scary because spinal AVM are very rare. That is good advice about having a bathroom schedule. I have in mind now do start back my swimming after many months waiting for the specialty appointment and being afraid of doing damage. Positive thinking x

Hi Franz_K thank you for your reply
Your story sounds very similar to me. Many months of different tests to rule out what was causing my symptoms. Yes there are good and bad days on a good day I can be taken by surprise and be able to walk briskly and the next it’s like having concrete legs especially left which is my weaker side. but everyone on here is is so positive and to hear how everyone else copes is reassuring for the future.
Thank you to all

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sorry to hear that, but I think it will all work out. Keep exercising for
sure. Your upper body strength will be very important, just in case
anything happens. the fact that I could pull myself up/sit up in bed and
turn around in bed when my legs stopped working, was a huge help to me.
And see if an emoblization is a possibility, that basically glues it so it
stops growing. Keep up the good thoughts

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Hi Mandaayr,

Please send your MRI and Angiogram results to Barrow Neurological Center. They will review your records for $100 and tell you if they could operate on you. Dr Robert Spetzler is the best surgeon for Neck and spinal AVMs. He is retiring soon, so please contact him ASAP. My 9 year old daughter had AVM at the same exact location (C7). Dr Spetzler did the surgery in June 2016, with Gods blessings my daughter is doing good now. She is back to normal and going to school like any other kid. I thank God each and every day.

Hi there, I’m in the uk, Sheffield, I have a spinal AVM in the conus, near the bottom of my cord, I started with sharp back ache in June 2015, then foot drop leg weakness, bad balance issues, had a discectomy to remove some disc at L5 but didn’t get any better, had various MRI scans and angiogram at hallamshire hospital in Sheffield where finally diagnosed, the neuroradiologist had never seen one before so I was referred to the Walton centre in Liverpool. I had a partial embolisation in oct last year and I’m back in for another on 15th march, I was told they can only try to stop my symptoms progressing, which they have , I have bladder, bowel issues and need a stick to get about but it could be worse. I try to stay positive but it’s difficult at times, worrying constantly about leaving house. People say they understand but I feel like they don’t , the numbness around my backside etc you can’t explain

Hi DadfromNaperville, thank you for your advice but don’t know how realistic for me to travel to Arizona as I am in the U.K. I have faith in my Dr just now and do hope my MRI will show little change. Good to hear that your daughter is doing so well

Hi Jamie4
Your symptoms sounds very much like mine. I only seen my Consultant on Monday and was told My AVM is in C5-7 and the nidus is inside my spinal cord which kinda puts me at too much risk to do any treatment. I tell people I have symptoms from my head to my toes but just don’t think they “get it” . It could be so much worse as I am still able to work (having to change job though) and pretty much have some normal life (pain killers help) but the scary bit is that I have to expect that it probably will get worse. I have to get another MRI to compare any change over the last year and from this they can give me some sort of prognosis. Doc said It is so rare that there is no real evidence to justify treatment at this time. And Considering he has only highlighted one very slim chance of glue to one f the small feeder veins, he suggests that it could make things worse and he puts me in a wheelchair just now instead of a possible 5-10 years. It’s hard to stay positive sometimes but I am trying to focus on my family and starting a new job. People don’t see what’s goin on so I suppose it’s hard for them to understand. It’s only when I start limping and walking funny or else loss my balance that people notice.

Hello Jamie4,

yes, did your journey 4 years ago. Dont give up. But really I understand your thoughts: Its a invisible thing, many friends didnt understood me too. Best wishes to you !!! Had to many embolisations but at the end two laminectomies killed/stopped the beast in my spinal. best for you !

Perhaps you contact the neuroradiolgist here in Augsburg, germany. He is one of the best wordwide too, many rich man from saudi arabia visits him. He helped me too, happy to met him.

Hi Michael , I’m hoping the next embolisation next week may help me, i think each time they do something it’s a positive step, I’m used to my situation now and know it won’t just get better overnight. The guy who does my stuff is from Germany and very highly thought of, I trust his judgment. I’v been told it’s not viable to operate on because of where it’s located so embolisation is the way forward. As long as I wake up again after op then I’m happy, I have a little boy 16 months and it breaks my heart I can’t look after him properly on my own but he keeps my spirits up

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I’m sorry to hear about the prognosis abd the difficult area your nidus is. I agree with your doctor about not doing the treatment bc I read that people with difficult cases actually do worse after the treatment sometimes. Hang in there!

Has anyone ever try gamma drive surgey to cure spinal avm? I just need to find just as much info as possible bout this …as my fren having spinal avm i was told he start to feel numbness on his left leg n other part of his body…is that among the effect of avm?