I’m hoping to connect with someone who’s had a similar experience.
I’m 54 and had a hemorrhagic stroke in December caused by a small AVM in the paracentral lobule (leg motor cortex). The AVM wasn’t visible on MRI and was only found on a cerebral angiogram.
The MDT decided that Gamma Knife was the best treatment because of the AVM’s location, and I’m currently waiting for treatment at Sheffield, hopefully in August/September.
Nearly 7 months on, I’ve improved a little with my balance, hip movement and foot lift, but my mobility is still very limited. I can only walk around 50–100 metres (about 6–7 minutes) before both legs become extremely heavy and feel completely exhausted. Once that happens, I can’t repeat the same distance again that day. I’ve also been discharged from physiotherapy and occupational therapy, but I’m still struggling with walking endurance.
I’m really looking to hear from anyone who has:
Had a ruptured AVM in or near the motor cortex.
Been treated with Gamma Knife.
Experienced ongoing problems with walking, heavy legs or fatigue after their hemorrhage.
I’d love to know:
How long did it take before your walking improved?
Did Gamma Knife affect your recovery?
Did anyone else have similar muscle exhaustion when walking?
Is there anything that helped your mobility or endurance?
It has been quite an isolating experience because I haven’t been able to find anyone with a similar diagnosis, so I’d really appreciate hearing your story.
Welcome to our community! My AVM was left temporal and was discovered in May of 2016 when it ruptured. I was treated with Gamma Knife in November of 2016. I can tell you post rupture I was sleeping upwards of 20 hours a day for the first few weeks, which over a period of months retunred to normal level. I had no energy, and was exhausted after any activity. I started walking short distances and built up gradually over a period of months.
The Gamma Knife day really was little impact for me, and the only thing I noticed was some weird feelings in my head and then around 6 months started to get “ice pick” headaches. They appeared suddenly, were of short duration and over a period f time decreased and disappeared. I did have some swelling around this time but did not require a course of steroids.
The most difficult challenge was certainly the post bleed recovery and had to remember forward is forward, and certainly not a linear path! Take Care, John
Thank you for taking the time to reply. It’s really encouraging to hear from someone who’s been through a rupture and Gamma Knife.
Your comments about the fatigue and having to build your walking up gradually really resonated with me. I’m around seven months post-hemorrhage now and can only walk about 50–100 metres before both my legs become very heavy and exhausted. Once that happens, I can’t repeat the same distance again that day, so it’s reassuring to know recovery can continue over many months.
It’s also good to hear that Gamma Knife itself wasn’t too difficult for you. I’m still waiting for my treatment date at Sheffield, so hearing positive experiences definitely helps.
I really like what you said about “forward is forward, and certainly not a linear path.” That’s something I’ll try to remember on the tougher days.
Thanks again for your kindness, and I wish you all the best.
Hi, I have a large AVM near my right motor cortex, thankfully it hasn’t ruptured, but it was discovered after I had a seizure on the left side of my body. My doctors have advised me not to treat it because of its size, diffuse nature, and proximity to the motor cortex, even Gamma Knife has been advised against for now. I get an annual MRI which for 3 years has shown no changes so still no treatment but I definitely notice its presence in a myriad of ways!
From one motor cortex AVM owner to another, I wish you the best of luck! Please keep us updated, your perseverance inspires me!
Thank you so much for replying and for sharing your experience. It’s really interesting to hear from someone else with an AVM so close to the motor cortex, although obviously I’m sorry you’re having to live with the uncertainty of having one there.
Mine unfortunately ruptured in December and caused the haemorrhagic stroke. The AVM is small and located in the paracentral lobule, affecting the area associated with leg movement. Interestingly, it wasn’t visible on my original MRI and was only discovered later on the cerebral angiogram.
I’m now around 7–8 months on. I’ve had some small improvements with my balance, hip movement and foot lift, but my walking is still very limited. I can manage around 50–100 metres over 6–7 minutes before both legs become extremely heavy and feel like the muscles have completely exhausted themselves. Once they reach that point, I can’t repeat the same distance again that day.
Sheffield have decided that Gamma Knife is the best option for me because of the location, and I’m currently waiting for a date, hopefully August/September.
When you say you notice the AVM in a “myriad of ways”, I’d be really interested to know what sort of symptoms you experience, particularly anything affecting your movement or legs. Obviously our situations are different because yours hasn’t ruptured, but it’s reassuring to finally hear from someone with an AVM in the motor cortex area.
Thanks again for reaching out, and I’ll definitely keep everyone updated on how I get on with the Gamma Knife. Hopefully one day I’ll be able to come back with some good news about the walking too!
Hi Mark, the first symptom or experience I can connect to my AVM was when i was in my late teens/early 20s I experienced a few brief episodes of a numbness and tingling on the left side of my body. It would occur when I was stressed or had had too much caffeine oddly enough. The strange sensation would start in my left hand and/or foot and on a few occasions increase up my arm and leg and on one occasion my entire left side. I remember my left side including my torso felt cold. I could still walk and move every muscle but I felt very off. I would not describe it as weakness, more like a disconnectedness. It would last form anywhere between 15 mins to an hour.
I probably should have gone to the ER each time it happened but I was young and didn’t have insurance and it would always go away and return to normal. I described this to a PCP and I was told it was an anxiety attack. I learned to avoid triggers over time but to this day it can still occur, but is less severe lately. I’m not sure it is is seizure related or caused by a vascular steal phenomena caused by the AVM near the motor sensory strip.
In my early 20s I also started to experience pulsatile tinnitus, I could hear my heartbeat in my right ear. Again, a few doctors dismissed or couldn’t connect this symptom to discover my AVM. I learned to cope with these weird ‘quirks’ I had and did my best until I had a seizure 3 years ago. At the ER they did a ct scan and my AVM was discovered.
After that I had an MRI and a catheter angiogram and was sent to see a series of neurosurgeons who all advised against treating it right now since it is large, complex, and hasn’t bled. I take Keppra for seizure avoidance. The biggest hurdle for me has been mental to be honest.
I’ve learned that GK has really good success rates with smaller AVMs so I think there are many reasons for you to be positive, I wish you the best on your recovery journey
I think the diffuse nature of your AVM indicates against intervention, as well. Very difficult to damage just the AVM and not “good brain” when it is a diffuse AVM.
It’s really good to be able to sort reach other through sharing like this, thanks guys
