I had my AVM removed March 14, 2017 causing partial paralysis in my right leg and numbness and stiffness throughout my legs and bottom but predominantly on my right side. I take gabapentin for numbness and tingling and baclofen for muscle stiffness, but it never goes away. Will it ever??
Had the same five years ago, when the AVM treatment ended (after many angios, embos and laminectomies). It was hard - but yes it will be better. Now I have still this problems - but not so intensive and often as in the beginning. Best wishes !
@Joanne66 - I still have stiffness and tingling on my left side from a stroke ( not avm)
Have you had your b12 tested? We need b12 to coat our nerves. If you have too little or too much there are similar symptoms. In the USA the b12 that is common is actually not good- You want to get b12 that is Methylcobalamin
This is the most active form in the human body. It converts homocysteine into methionine, which helps protect the cardiovascular system. Methylcobalamin also offers overall protection to the nervous system. This B-12 form can also cross the blood-brain barrier–without assistance–to protect brain cells. It contributes essential methyl groups needed for detoxification and to start the body’s biochemical reactions.
I take half a chewable a day in the am- it can keep you up - It can also help with brain fog- I get my from healthygoods.com and I get the Seeking Health brand because it has been tested and its really what it states. I get the one that is just b12- My levels were only 100 and my foot doctor figured it out - It is now around 900. - But get a blood test and get your results even 300 can be low. - are you in physical therapy? I also use magnesium lotion they have oil too from Ancient Minerals which I buy from Amazon but i think they also sell it at Whole foods.
There is something called Wallenburgs syndrome where people who have had a stroke in certain parts of the brain that can cause this - Did you have a bleed?
Thanks Michael. I have hope of getting to where my symptoms subside some. Most of the stories here people have residual stiffness, numbness, and tingling. I’ll keep my hopes up though. I have nothing but time left to work on my recovery
Angel, I have a doctors appointment in October, I’ll ask to have my b12 checked. I bought magnesium spray from amazon and I keep forgetting to use it! I go to physical therapy 2x a week for 3 hours each time. I stretch, do exercises, walk on the treadmill with a harness to help me learn to walk faster, and I ride a FES bike. I love the bike. I feel best after I have the FES stimulation to my lower end. It is such a complicated thing. I didn’t have a bleed, my AVM was in and on my spinal cord. I had a laminectomy of T9-T12. I’m lucky to be walking they say. I believe them!
I wish you all the best in your recovery and I hope you continue to post your progress.
@Joanne66 - Glad to hear you did not have a bleed. Try the mag spray before you go to bed- it really relaxes my muscles - do it an hour before bed time- see if that helps- Sounds like you are doing great with PT pr physical torture as I call it- Dont give up - hopefully your blood test will show something that you can easily take a supplement for. Also check your b1- make sure you get a print of the results
My recovery is going great - after my stroke which also included 5 days in a coma I had to relearn how to walk talk etc
My experience is once I had the basics the doctors were happy but I still want to get back to as close as I can to my old strong self
Have you tried a tens unit or EMS machine? I recently bought one that is both from overstock.com this is to help wake up my muscles.
I had my spinal AVM removed in Aug. Prior to my AVM diagnosis, when it was still not clear what was causing my issues, I discovered a book called Minding Your Mitochrodria by Dr. Terry Wahls. There is a TED talk about her book that you can find on YouTube. She developed MS and essentially lost most of her mobility. By subscribing to a specific diet, she claims to have been able to get out of a wheel chair and now can walk and ride horses. I began to follow her diet and I think it has it benefits. I still have pins and needles in my feet and numbness in legs. I take Lyrica now and have taken Gabbapentin in the past. Still in physical therapy too. I hope that the combination of following the diet and the meds will help heal the nerves and manage the pain and numbness. Hope this helps you. -Chris
Thank you Chris. I listened to the TED and it is very interesting. She’s right, we eat crap. I’ve been incorporating good foods in my diet over time so maybe that is why I am healing well.
I went to the Dr last year and she said that one of my B’s was WAY too high so I stopped taking all my vitamins. I need to get my vitamins from foods!
I’m ordering her book. I will post if I notice a difference.