Update : 3 years after spinal AVM surgery

Hi everyone,

I just want to give an update on my improvements, 3 years after I underwent surgery on October 16, 2020.

Unlike many of you, I was not provided options for surgery, given that I was in the ER when they found out about my AVM, symptons of which were sudden and aggressive.

On Monday October 12, 2020 my legs started to feel funny while I was walking with some friends; on Wednesday 14, I was crawling on the floor to get to my kitchen; on Friday, October 16, early in the morning, I had surgery and my journey to recovery started 10 hours later.

I had no physical therapy planned after my surgery due to a loophole in processing my medical file at the hospital. I searched for ways to improve my condition (leg weakness, muscle stiffness, bowel and bladder issues, spasms, burning sensation in legs) on the Internet.

For a few months, a year after surgery, I saw a PT provided by my health insurance provider, with no real improvements. Then I found a kinesiologist on my own who really made a difference. I exercise every single day, but at different pace/intensity. Now, 3 years post surgey, I can do some jumping jacks and jog for 1 minute at a time, which is a huge progress for me who couldn’t jump or lift my knees one year post surgery!

I also work with a different pelvic floor PT who is more knowledgeable than the first specialist I saw for a year. My pelvic floor is much stronger now, I have no more pack pain, my bladder issues are improving, although I still use pads (I’m confident that I’ll be able to get rid of them at some point, at least when I stay home) and I still have some urine retention issues. Nothing much changed regarding my bowel issues (severe constipation), but they are more manageable (daily water enemas and Dulcolax suppository once or twice a month do the trick). I am using peppermint gel capsules for bloating, which help a little. I used Ceylan caps for a month for bloating but didn’t help much.

I can now walk without a cane or sticks for short distances. I sometimes walk 2 km without any aids, but my legs are on fire and my gait stiffens after a while, and I hurt for a few hours afterwards. I’m proud of myself though, despite the pain.

My endurance increased a lot, which allows me to take care of my house, work and resume some of my hobbies, like dancing, since it’s easier for me to move my hips, which I could barely move even a year after surgery.

I am working from home 3 days a week and I’m planning to work 4 days/week by January 2024. I’m not sure I’ll be able to work 5 days a week soon though.

Here are some things that I tried:

  • Yoga, Pilates, mobility and stretching exercises.
  • Strength/weight/cardio training; Zumba Strong/Zumba/Afrodance/Rueda classes to improve balance/endurance/strength and coordination.
  • Meditation (daily) and kapalbhati breathing (5 min twice a day).
  • Supplements: amino acids (EAA+BCAA) and collagen to help with muscle recovery/fatigue; whole food diet; reduced salt and sugar; Aged garlic caplets and beetroot crystals to control my blood pressure (my BP is normal now with those supplements and lifestyle changes); Omega 3; pumpkin seed oil capsules (for bladder issues).
  • I use my whole-body vibration plate daily, especially in the morning to warm up/loosen my tight muscles.
  • I tried deep/therapeutic massage, but didn’t feel any noticeable relief with muscle stiffness.
  • I was prescribed Myrbetriq for my overactive bladder, which didn’t work and worsened my bowel issues.
  • I’ve started taking ashwagandha (220 mg, liquid extract) which helps improve my sleep and my overactive bladder (OAB) issues (I can now sleep between 3 or 5 hours in a row at night, depending on how I manage my water intake).
  • I reduced my intake of vitamin D, which helped with my nocturia.
  • I tried acupuncture but it didn’t help at all.
  • Swimming helped me earlier during my rehabilitation process, but only strength/weight training gave me better results to improve my gait and endurance.

As a whole, I feel better than 3 years ago.

It is not an easy process though. Persistence and patience are key. It’s a daily struggle. I still have pain in my legs (burning sensation, heaviness and weakness, tremors), but everything is more manageable and less overwhelming. The slow but consistent progress motivates me to keep going.

I’d say that I’m 70% back to “normal”, but my body is completely different from before.

PS: I had what is supposed to be my last Brain MRI earlier this month and I should meet my neurosurgeon for the last time in December. On last year Brain MRI, there was no more swelling in my spine.


Thanks so much for the update. It is amazing to hear our improvements, and 100 % “persistence and patience are key”! I’m going to add courage in there as well, you are the example of that! Courage is not about being unafraid, courage is about being afraid and carrying on, that of course is within reason and what your body will allow. I sure appreciate the update, and it is messages like this that help us all so much. Take Care, John.