First of all please excuse my broken English.
Here's my story, my mom had so many common AVM symptoms over the years - last 4 years to be exact- numbness in her arms and legs, pain, very low blood circulation, sudden falls. But unfortunately no one could diagnosed. And finally last January she has been diagnosed with Spinal AVM. Unfortunately the only option was surgery which we pursued. After the surgery she was paralysed under the waist. It's been 10 months that she is having heavily Physical Therapy and doctor says that it's a nerve problem and we all need to wait for her nerves to start contributing again.
Is there anyone out there who had the same problem and recover? I live in San Francisco, United States and my mom lives in Istanbul, Turkey with a living in nurse and I really need to know that it is possible for her to walk again.
Please share your stories with me I am extremely concerned and so thankful that I find this website.
I did not have a spinal AVM, mine was cerebral, but when it ruptured during an embolization, I stopped being able to move my left arm and hand (I was awake during the embolization). I was rushed to emergency surgery and when I woke up from that I was unable to move my left arm and hand as well as my left leg and foot. The doctors said it was just that my nerves needed time to "reboot" after the trauma of the brain surgery. In a few weeks of heavy duty physical and occupational therapy I regained movement gradually. It took me a while to get my left side back to the point that I could continue my career as dancer, but movement and coordination and strength did return.
How long rehab takes depends on a lot of factors including age and physical condition before the surgery. If the doctors say that your mother will be able to regain movement, it's a good bet that she will be able to walk again. However, it will doubtless be a long, tough, and slow recovery. Sometimes electrical stimulation can be used to encourage the nerves to "wake up" again; I'd advise you to talk to your doctor about the concern and consider having your mother see another physical therapist.
Heavy exercises and physiotheraphy can really help in recovery. I’m also a spinal avm paitent and I’m having regular physiotheraphy. Your mother will recover soon.
Thank you Sakura. May I ask how long you've been having physiotherapy? Did you have any operation for your AVM?
Thank you for sharing your story with me. She is using electrical stimulation for massage as well. Her doctor is not saying anything for sure, he is just saying that the surgery went well and we need to wait for the nerves to 'reboot'. It's been 10 months so she is starting to feel like it's forever. May I ask how long it took you to get back to dance again?
It took me about 6 months to get back to the point where I could do basic and intermediate level movements, and another 2 months to get back to the more advanced movements. By 8 months I could do a triple pirouette on my left side, which was about as many as I could do at my best before surgery, although it has remained harder for me to do it than it was before the surgery.
And I have to say, I worked like a dog to get myself there. It took a lot of determination and working every day. There were plenty of times I was in tears at rehab because I was so used to my body being my tool and responding quickly and efficiently to anything I asked of it. To suddenly have it not respond at all was devastating. On the days I didn't have rehab, I worked my foot and leg doing something, anything I could think of just to push my muscles and try to reconnect the neural pathways I needed.
To this day, whenever I learn a new movement on the left side, it takes me about twice as long to "get it" on the left as it does on the right. My left side is still weaker - so a weight lifting movement that fatigues my right leg after 15 reps will fatigue my left leg after about 10.
Hang in there - I know patience is close to impossible when you're trying to gain back movement and coordination, but find a physical therapist you like and don't give up!
Thank you so much for this great reply. I am so happy to hear that you gained all your strength back and went back to dancing. You are a brave soul. You all are. I know how hard it is and I am trying to be as supportive as I can be. The longer it takes the more impatience you become. These stories are giving me hope and strength. Lots of positive energy and love to you.
My name is zahra and i live in iran. I am sorry if my english is not good. My brother is 39 and has spinal avm so he had a surgery Two months ago and now he cant move just like ur mom. His wife and children are so sad and he is hopless. His doctor doesnt say any thing for sure. Is your mom ok now? Can she walk? I really dont know what i should do to help my brother and his family. Hope to hear from u soon
I am so sorry to hear that your brother had the surgery. Unfortunately all these times every doctor we’ve ever visited said surgery should’ve been the last option and there is literally nothing they cant do and no one can say a certain thing, some says she will walk again and some says maybe not… I am from Turkey and sorry for my English as well… My mom is not mobile unfortunately no improvements… I wish I can say a different thing to you, it has been a very tough journey for all of us. What I would suggest to you is that make sure your brother is getting physical therapy and if needed psychological therapy as well. Movement is really important and be very careful about bed sores :(( My mom had to have two surgeries in 3,5 years for bed sores. Thats very important. Make sure that he is moving enough side to side or sitting/laying and changing positions in every 3 hours at least.
Thank you so much for writing to me, please let’s keep in touch. Much love to you and your brother.
I am so sorry to hear it . No one didnt know that my bro had AVM, few months ago he couldnt move his neck so he went to a doctor and the doctor told him that it has less risk for him to have the surgery than not to have the surgery. I hope they will walk soon since they have a lot to do for their children. My brother has three little kids who really need his support :((. what kind of surgery did your mom have? when did she have the surgery? is it usual for every one not be able to walk after having the spinal AVM surgery?
Hii my elder brother is of 26 nd has spinal avm he had embolization 8 months ago…nd now he cant move his both legs his doctor is still determined about his recovery…can he walk ?? We are so depressed…is there any one who has same experince???
Mine was a brain avm and I had both embolization and craniotomy to remove it. At first my whole left side had weakness so I couldn’t walk like completely bed and wheelchair bound. But 6 months later and with rigorous PT for 6 months Im walking with my hemi walker. It takes time and definitely alot of ups and downs but if your doctor is optimistic then from experience (I didn’t believe my surgeons’ optimism) trust it. There will be moments of weakness and frustration but I believe too there will be a possibility of walking again just keep working on it. Because I know I did and still am. It’s not impossible so chin up, this is just a rock on the road to recovery; this too shall pass
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Very best wishes