Hi, I had a brain surgery for an AVF on my spinal cord (neck area) late in October 2020 at the Civic Hospital of Ottawa (Canada). It was an emergency surgery which lasted 10 hours. They had to make a hole in my skull in order to reach the fistula.
Everything that happened was/is a shock to me. I never suspected that I had a more serious problem than a regular back pain and constipation until my bladder stopped working and I couldn’t walk, which brought me to the ER.
They first tried steroids but I ended up not feeling my legs any more, reason why they had to operate on me. I still don’t’ know if the avm is removed completely though, since I need to undergo a follow up angiogram.
Almost 4 months post surgery: I can walk 2 km with walking sticks but I am in pain all the time. My back is painful, I have spasms in my legs, back and sometimes in my intestines. My legs swell and my back burns when I sit for more than 30 min. I can’t stand or sit for too long; lying too much is not better since I can also have spasms.
I no longer use a catheter but still have some bladder issues (retention/incontinence); constipation is still severe, but I don’t use laxatives since they were worsening my condition. I use an enema (and digital stimulation/removal when nothing works).
I don’t eat cereals, bread, rice or regular meat; I eat lots of veggies, a few fruits, seeds, nuts, sardines, algae, fish, giblets, tofu. I can’t digest broccoli, cauliflower, beans (but chickpeas are ok). I drink a lot of water and herbal teas. Gluten is NOT part of my diet. I also eat dark chocolate almost every day.
The pain around my neck disappeared, that’s the only improvement!
For some time after the surgery, I couldn’t feel my butts and now they became so flat that they hurt; my core is weak; I am extremely tired all the time. I just started to be able to sleep for 2 hours in a row at night, hoping it will get better and I’ll be able to sleep 6 hours in a row some day.
Presently, writing, using the computer/Internet and reading are difficult to do. I can’t focus and my body gets tensed/achy quickly.
I was quite upbeat until 3 months after the surgery, but now I have to deal with depression because everything seems like a huge task to do: waking up, eating, walking, taking a shower, etc. I’m tired of the endless pain. I take Tylenol pills as needed (prescribed by my neurosurgeon) but they don’t’ help much.
No specialist really took care of me after I left the hospital, I really felt like I was abandoned. Thankfully, a rehabilitation center accepted to take care of me following a referral from my GP. I’ll see a physiotherapist next week (almost 5 months post surgery!).
How do you deal with the spasms? Do you know of herbal remedies? I was not prescribed any meds but Tylenol when I left the hospital. I have high blood pressure, but I monitor it with my diet.
Is being constantly in pain common for this condition?
No health specialist I saw knew about dural arteriovenous fistulas (but the neurosurgeon), even less in the spinal cord! My GP just helps me find resources and does not know anything about my condition.