I wanted to share my story. I hope it provides others some insight, hope, or courage.
I had a spinal AVM removed surgically June of 2017.
My condition was misdiagnosed for many years. Starting with foot pain (burning, tingling, shooting pain). While never getting a clear diagnosis I tried treating as gout, arthritis, or broken bones. Nothing was resolved and ended up dealing with pain for +10 years. I was able to maintain an active life skiing, traveling, and no mobility problems.
Fast forward to about a year prior to surgery, I started feeling immense weakness in my legs. Going up multiple flights of stairs became very hard. At this point I went through a battery of cardiac tests thinking it might be heart disease as this ran in my family. Passed all tests cleanly. The issues continued to graduate to some balance issues and eventually temporary left leg paralysis. At this point I went to a neurologist who thought it may be a disc in my back and ordered a MRI. The MRI showed a 53 year old man’s back who grew up playing contact sports but no disc issue. The radiologist did notice a very minor abnormality at the bottom of the image. Several additional MRIs and my neurologist/radiologist were able to diagnose spinal fluid backup from T8-T11. At this point, the potential of a spinal issue was first raised. I was at this point referred to MGH in Boston.
After several additional mri’s and consultations it was decided to do an angiogram. My team of doctors believed it was a spinal avm but could only confirm via angiogram. The angiogram was scheduled. The angiogram concluded that it was a spinal AVM at T11-L1. Surgery was recommended and scheduled as if left untreated if would eventually cause an aneurysm.
I am blessed to say surgery was successful and that the amazing surgical team were able to remove the AVM and remove the risk. I have almost full mobility minus some minor left foot movement. Pain in my feet is still very strong and I also have some leg twitching but hopefully as my body continues to recover it will dissipate (I also get cold really easy now - ???). The doctors have told me that it will take a year for spinal cord to heal fully.
I have spent the time post surgery recovering and continuous physical therapy. The nerves to my feet are significantly damaged but I am very mobile and committed to attaining 100% recovery.
I truly am blessed that along my journey I was the recipient of some amazing medical care. From the neurologist and radiologist who initially diagnosed the issue to the phenomenal surgical team at MGH who performed the surgery, to the physical therapy team currently supporting me. I am lucky to have such a positive outcome.
I wanted to share as AVMs are rare occurrences and a lot of the information you find can be very frightening. I know going through this process it was hard to find information, especially positive information. I hope my story provides someone comfort or I can be a friend to someone at the beginning of their journey. At my beginning I was given the following advice by a friend who survived stage 4 pancreatic cancer (less then 1% chances of survival) - “Stay positive through the process and focus on what you want the outcome to be.” I reminded myself everyday.
Good luck to all. You have my best wishes and please do not hesitate to contact me if I can provide support.