Just wanted to share my avm story as I remember when I was at the hospital, just heard avm for the first time and was looking for information, this forum was very helpful.
On the 1st of December 2016, at age 29 I woke up one morning with sharp pain in my legs. Soon after I could feel that my sphincter was not normal anymore. Less than 45min later I was on the floor and couldn’t move much of my legs. Toes impossible to move, couldn’t stand up anymore. I am french but was in Germany at that time.
I was taken to the hospital and they sent me to the MRI urgently where they immediately noticed an avm at T11. Following the MRI I got an angiogram which confirmed the avm and then got an embolization the next morning, 2nd of december.
The control MRI and CT scan showed that the embolization only close one feeder but that others existed, so I then had a laminectomy where they were pretty confident that they managed to remove the whole avm.
After surgery I had major back pain for about 10 days due to the operation. I then flew to France and started physical therapy. At first I had to use a frame then crutches then pretty quickly nothing. I did a total of 6 months of physical therapy, sleeping at the hospital for the first 3 weeks then as an outpatient. The progress were fast at first then not as fast but I am syill making progress to this day. It really is something that took me some time to realize but the healing timing is different to anything I had before. I’ve never been sick for more than 5 days in the past so just couldn’t apprehend that progress will be so slow.
I am now back at work, have weakness with my calf and gluteus medius mainly. My left leg is worst than the right one. My bladder also does not work at all so use intermittent catheterization. I do not feel the back of my left leg and the lower part of my leg is oversensitive… I don’t really like it to be touched, it’s not very nice to feel the bedsheet neither.
Anyway, all in all, I feel very lucky as the operation went very well and due to my job I could have been in a way worst part of the world at the time. I think it is important to give some time for physical therapy and not to give up to early. At first I really though I will need crutches for ever but actually not.
That being said it is also important to remember that everyone is different. I remember people telling me when I was in hospital that lots of the healing is in the head/mind and I found it quite annoying as they do not realize how frustrating it might be sometime to try to do something and just feel no response from the muscle.
One thing for sure is that we can adapt to a lot of things. And things do get better. I never really heard of self catheterization before. Was devastated when I started to realize I might have to do it for ever. Now, not even a year latter it does not really bother me at all.
That’s about it for now. The whole story might be a bit confusing… I’m not very used to write on forum usually. Feel free to ask if you have any question, would be happy to help as much as I can