Hi all. Long time lurker, first time poster. @jpsid1, I’m really sorry to hear about your son. Your post is the first time I’ve been able to relate to a poster, so I wanted to reach out to share my experience.
In March 2022, I (34 y/o at the time) woke up in the middle of the night with a severe headache and neck pain due to what was later diagnosed as an AVM bleed. This may have been the second bleed (first in ~June 2019 but it went undiagnosed). In March 2022, I underwent diagnostic imaging–XRay, CT, CT Angio, MRI, MRA, Angiogram–and confirmed the existence of an AVM at the cervicomedullary junction (~C1). Initial symptoms after the bleed included headaches, severe fatigue, brain fog, nausea, and left sided weakness (to include difficulty walking on my left leg, poor left hand dexterity, left trapezius palsy, numbness/tingling, cold skin sensations, and skin sensitivity on the left side of my head and neck). I started receiving treatment at UCLA (Dr. Jeremiah Johnson + others), and the UCLA team recommended not treating the AVM due to the risk of its location. AVM management includes regular monitoring via annual MRI/MRA and lifestyle changes (e.g., no straining or heavy lifting, monitoring blood pressure, etc). There is a risk of repeat hemorrhage of about 5% per year which, at my age (36), is a bit scary to think about. I’m going to attempt to attach still images from my angio, so hopefully it goes through.
I sought virtual second opinions elsewhere–Barrow (Dr. Michael Lawton), Stanford (Dr. Steven Chang), and UCSF (Dr. Matthew Amans)–and there is a consensus that surgical treatment is not recommended. Dr. Chang at Stanford did suggest Cyberknife radiosurgery, though I’m reluctant to proceed with this option at this time.
In the 19 months since, I started taking Cymbalta to help with neuropathic symptoms and take Tylenol as needed for pain management. Muscle relaxers haven’t been effective and leave me groggy for days. I’ve been doing neurologic physical therapy regularly and have dropped most physical activities. Many of my symptoms have improved, but many have also lingered, and others have come and gone. I’m currently dealing with frequent cluster headaches, depression, neck and shoulder muscle tightness, fatigue, left leg clonus, some muscle tone, poor left hand dexterity, and lower torso muscle spasms.
Regarding your son’s experience last weekend, I haven’t experienced anything like that myself. I don’t drink alcohol and I cut out strenuous physical activity altogether, but I still get cluster headaches frequently and I’d rate them 3/10 at their worst (painful and uncomfortable, but not alarming since they’re consistent).
I’d second the suggestion to get a second opinion from Barrow. It’s very affordable and they provide a comprehensive write-up. Best of luck going forward and please don’t hesitate to reach out.