Update : 3 years after spinal AVM surgery

[Karine]

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.

[JD12]

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.

[Joanne66]

@Karine I am glad to hear you have so much improvement. All of your hard work is what is getting you there. My surgeon would point to his head and say “you will get as better as you think you will”.
I have a question for you about the WBV plate. I have one as well, but if I use it wrong I suffer with extreem stiffness and extra nerve pain. I use mine on “vibration” strength 2 for 30 sec to 1 min only. I am nervous to do more because of the discomfort I feel. But I also feel improvement so it’s confusing! What settings do you use and how do you feel afterwards?
You are inspiring!
My AVM was in my spine at T9-T12. I had a lamenectomy and vascular resection March 2017. I have similar residual issues. Nerve pain in my legs, spasms in feet, legs, pelvic floor, butt, and sometimes intestines. I take Gabapentin 3x a day, baclofen 3x a day, Alpho lipoic acid 1x day, and recently started taking CBD 2x a day. Outwardly people can’t really tell I have anything wrong with me, which is good. I have a limp and sometimes my right leg will give out from the knee down. I can do most of the things I did prior to surgery.
I can add a suggestion for you to try, it’s call New Gait. I used it at PT and immediatly felt a difference in my gait following the initial use. I ended up buying my own for at home, but now need to be better about using it. https://thenewgait.com/ I am not a salesman, this thing really works! Kind Regards, Joanne

[Karine]

Hi @Joanne66,

I agree with your surgeon. Mine told me something very similar and encouraged me to keep my positive mindset and fighting spirit alive, which I do.

I use my WBV most mornings to wake up my muscles. When I started using it, I did NOT stand on it, I sat on a chair and put my feet on the platform and jungled with the different options at a very low level. I did that for at least 6 months, while I was strengthening my body with regular exercises. When my balance and strength got better and I had a better understanding of my condition, I started to stand on it.

My advice would be to sit on a chair and use the type of vibration that is comfortable for you. If it’s ‘pulsation’, stay with it and explore the low level (mine goes from 0 to 20 ) for a few weeks or months, if you prefer. If there’s no stiffness or discomfort, try the middle range level and alternate with the lowest level. You need to challenge your body, reason why it is important to change the intensity even if you stay in the lowest level. Then if there’s no discomfort, try the Lateral vibration (from side to side). And you explore the lowest level for weeks, and alternate with pulsation until your body gets used to it, and so on so forth.

Pulsation (normal vibration) is good for relaxation, soreness and recovery; Lateral (side to side) is good for balance, posture and mobility; Oscillation (up and down) is good for muscle toning, bone health, lymphatic drainage, calorie burning.

It took me 3 years to be able to use all three different types of vibrations. I mainly use the lowest level and alternate with the middle level. I tried the highest levels a few times, but it’s very hard on my body, so I use it sparingly.

I use the plate for 10 min or 20 min in a row, depending on my level of fatigue. I usually feel revigorated and relaxed afterwards.

I don’t take any meds for my residual symptoms, but I do take supplements: Collagen peptides, BCAA, Omega-3, vitamin D3-K2, Ashwagandha, Rhodiola, Aged garlic Extract + beetroot crystals (to keep my high blood pressure in check), Metamucil and water enema (for my neurogenic bowel).

And the NEWEST addition is self-catheterization (for my bladder issues). It’s a regression for me, but it is also a better option to deal with the urine retention. I self-cath once or twice a day, and it helped tremendously. Instead of going to the washrooms 8 or 12 times a day, and relying strongly on pads, I go 5 to 7 times a day, and my pads are here to reassure me mostly. I mainly do reverse Kegels (focusing on relaxation) now. It’s not fun, but it helps.

People can’t tell either that I have a hard time walking or my legs are tired\heavy. I read somewhere that people with SCI spend much more energy doing the same thing a ‘‘normal’’ person do, like walking for example, because of the new pathways which were created to perform the same tasks. That may be the reason why I feel so tired while walking or taking care of the house\cooking, etc.

Fatigue and pain are my new companions now. At least, I’m alive and I can take care of myself. I feel very blessed to be able to do that.

Thank you for the New Gait suggestion. I financially can’t afford any big expenses now, but I am happy to hear that it helps you. I was never offered any tools like New Gait post-surgery, which would have been helpful.

I had to give up social dancing and the zumba classes, because they were too taxing on my body. I may try again someday! I still dance at home though, and I take private tango classes, once every 3 weeks. I was an intermediate tango dancer before the surgery.

Take good care of you!

xoxox