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AVM Survivors Network

Nerve pain after treatment

#1

I had a spinal AVM at T11-12 way back in 1998. They 1st tried to embolize, but that didn’t completely eradicate the AVM so I had surgery to remove it. By the time I received treatment I was paralyzed from the waist down, but was blessed enough to regain my ability to walk, and most of the sensation on my left side returned. Still have bladder probs. But the biggest problem has been this unrelenting pain in my right leg, although it’s coming from the damaged cord I feel it in my leg. 20 years now, it just won’t stop. I’ve tried almost everything you could probably think of, except a pain pump, which I’m now considering. The only thing that has really helped was methadone, but when the CDC put out their guidelines my dosage was cut in half and it’s just NOT HELPING. I already have a spinal stimulator that isn’t helping, and the thought of another device is just devastating, especially when I know my pain is well controlled with medication, just a higher dose. I had been on the same dosage for 12 years and was doing well, so it just kills me that I may have to resort to this implant now. Has anyone else that had a spinal AVM been left with pain? If so, what has helped, if anything?

#2

@Barbara3
I am so sorry! These no opiates issues have drs freaking out .
I do have nerve pain in my head left arm and left leg after my CVST stroke prior to my AVM in 2011 and it hasn’t gotten better.
I am allergic to most opiates so in 2014 ( I live in San Francisco) I finally got a medical marijuana card ( my dr turned out to be a neurologist who specialized in the part of my brain that got damaged by chance)
I just do gummies, tinctures and topicals. It helps my sleep , nausea and takes it down a notch.
I also see the Stanford pain clinic where I get Botox shots every 3 months where my head pain is - and I get migraines.
Recently they diagnosed me with Centralized Pain Syndrome from that first Stroke.
They also tried a 5 day inpatient Ketamine IV infusion ( inpatient just Incase I was allergic)
I did get a few days of total pain relief.
From what I understand you need 6-8 of these treatments to “ reset” your pain.
Next time I can do it out patient j- so you go 3-5 days and just sit there for 5-7 hrs.
Right now they are backed up so my dr prescribed me some oral Ketamine and you have to get from a compounding pharmacy- the cheapest compounding pharmacy is Belmar pharmacy in Colorado.
Maybe see if your dr is willing to try a Ketamine IV infusion.
https://www.ninds.nih.gov/Disorders/All-Disorders/Central-Pain-Syndrome-Information-Page

Hugs
Angela

#3

My husband was left a C5 quad after his spinal avm surgery didn’t go well. He used to have the most horrendous nerve pain constantly. Nothing Drs gave him worked. Our GP suggested high doses of B12. It took a few weeks to start working and around 3 months before the benefits were real enough for him to function. He has been taking 5000mg a day for just on 3 years now and his nerve pain has decreased from a level of 100/10 to 1/10. He now takes no other pain meds at all. he still has the occasional bout of strong nerve pain but usually when his legs are very cold and obviously he isn’t aware of it. Once we warm them up his nerve pain decreases. B12 is non toxic so regardless of what levels of B12 show up in his blood tests, he keeps taking it. Every time he stops taking it the pain increases again and then takes him a couple of weeks to get it back under control. Its worth a try for you but remember it doesn’t happen quickly and no where near as fast as you’d like it to, so hand in there.

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#4

@jules2 taking too much b12 can cause issues. I suffer from not enough b12 and have a cousin who has the opposite issue - anyway we use b12 to make coating the coats our nerves

Having too little causes brain fog and cramping and my dr said too much can cause the same thing.

I just want to make sure that people get their b12 tested before taking it and before taking any supplements really need to talk to their dr.

I took vit k and never told my dr and ended up with 5 blood clots in my brain and had a massive stroke and went into a coma

Angela

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