So the pain in my leg has become unbearable over the past couple months, my AVM doctor has been extremely helpful since I started seeing his team, when the pain persisted a lot longer than it after my last embo, he explained it’s likely the CRPS causing the level of pain I was in, he did an MRI to confirm and there was no new growth. I developed CRPS after my first embo, so pain just happens and anything can trigger a flare up. He suggested a lumbar sympathectomy, I was extremely hesitant but eventually I did it in 9/25. I had a couple of months of nerve pain relief but a deep set pain then took center stage like in the bone and then all the other symptoms started to return a couple months ago. He finally said I need to see pain management for continued care for the CRPS. My new doc ordered a bunch or MRIs and and 3 phase bone scan, the bone scan showed “chronic avascular necrosis” from my ankle and into my foot. Which validates all this deep set bone pain. Which could be a result of the blood flow fluctuations from the AVM or from the CRPS. Has anyone had bone loss in an extremity effected by your AVM? I’m just trying to see if this happens to others with extremity AVMs or it’s both causing the bone loss. What did they do about it if anything, how did you cope with the pain?
It’s good to hear from you but it doesn’t sound good overall, does it?
With brain AVM patients (and we have more brain AVMers here, so I feel more familiar with such patients) we sometimes have necrosis that leads from surgery or radiotherapy or possibly embolization, where effectively the surgery has closed off blood supply to something functional. I’m wondering if your avascular necrosis is basically caused or at least exacerbated from the same cause: i.e. from your embolizations. Clearly avascular necrosis is something that can develop for a number of reasons but having had an intervention in your foot, I’m suspecting the intervention, at least as an exacerbator.
Hope this thought helps in some way: I realise it is not wholly a positive thought and note always that I’m no doctor, I’m just looking at the similarity with other patients here, as a patient myself.
Lots of love,
Richard