For those who have read my previous posts, you’ll know that I’ve shared a bit about my journey with my right lower limb AVM. So far, I’ve undergone two surgeries, followed by sclerotherapy last year and bleomycin electrosclerotherapy to my calf and thigh earlier this year. Sadly, looking at things now, I feel that the latest treatment hasn’t worked. I’m still experiencing terrible pain, and it’s taking a real toll on me, both physically and emotionally.
Today, I received a letter from my interventional radiologist, and the overall message was that there is nothing further they can offer me. Reading those words has really knocked me for six. I’ve been trying to get through this, holding on to the hope that something might eventually help, and now I’m left wondering, what happens next?Am I just supposed to accept living with this level of pain for the rest of my life? How do you come to terms with the possibility that there may not be a treatment available to help you? I know AVMs can be incredibly complex, and I understand that not every treatment works for everyone, but it’s so difficult to keep going when you feel like you’re have no options left. I’m feeling really low today, and I think I just need to let it all out somewhere where people might understand. I know many of you have been through your own difficult journeys, and I’m wondering if anyone else has ever been told there is nothing more that can be done, only to find another avenue worth exploring later on. Have any of you sought a second opinion or been referred to another specialist when your original team felt they had reached the end of the road? Has anyone found another way to manage the pain when treatment is no longer an option? I’m not necessarily looking for anyone to have all the answers. I think I just need a little hope, some understanding, and to hear from people who truly get what it’s like to live with this condition. Thank you for reading. Sending love to everyone who is fighting their own battle with an AVM. 