My name is Rachel. I’m 21 yrs old and I have an AVM in my left mandible. I’ve had almost 20 operations since I was nine and have usually dealt with the trials of this alright. But within the past year things have been really difficult for me emotionally. I keep asking myself, How much is “enough” treatment? It seems like things aren’t ever going to get better and I’m only buying time or… I don’t know. My pain is through the roof and the doctors took me off opiates because I have a “long term problem and opiates are a short term solution”. Neurontin doesn’t work and they don’t think other pain meds will either.
I was supposed to have another angiogram and bleomycin injection in NYC next week, but I just found out today they still don’t have authorization for my operation. In addition, they were also going to do a nerve ablation in one of the areas I’ve had intense pain in. However, that’s not happening either.
I just feel like at this point I’m going to live in pain forever. With every operation it just gets worse; and my AVM only is manageable for a year or two before I have to go in again. Has anyone else struggled with questions of how much is really worth it/Would it be terrible to just let it grow? I’m tired of countless appointments, traveling, and missing school and work. I don’t know how to grow to be ok with it all again.
Thanks for reading. Also tagging @Facial group (hope that works) in case anyone there has dealt with similar issues.