I have a few questions for anyone on the board who either has experience with what I am gonna post or ha any advice. But before I post those, I will let you know a little about us & our story.
My husband was diagnosed with Chiari & Syringo back in 2002. He underwent his decompressive craniectomy in November of 05. Since that time he has been on pain management, receiving botox injections in his head every three months for the headaches & on a number of other meds to help with pain & discomfort. For the last eight years we have been fighting the VA to give him a higher rating for the spinal damage & pain. They first rated him at 10% and since our appeals he has been given 60% but, they still have "mild" pain on the diagnosis and we are fighting them to let them know he is experiencing more than just mild pain & discomfort. This condition & it's progression even after surgery has changed his life. He has never been the same.
Here are the questions:
1. For the last three months he has had an ongoing rash on his lips. We are not sure if it is associated with the syrinx or maybe a reaction to meds. The rash is red but some bumps look like they have puss inside. He tells me he feels like his mouth is on fire & nothing seems to relieve it. He went to the ER (VA) last month and they gave him allergy meds, which actually seemed to help but a few weeks later it came back with a vengeance. Nothing he puts on his lips is helping & he doesn't know what else to do. Does anyone know if this is associated with the condition or has anyone experienced this?
2. VA doctors are NOT very knowledgable with Chiari & they never take his complaints seriously, which has led him to great depression. We are actually looking into looking for a neurosurgeon who can help us, but since he is a veteran... we can't just go anywhere. Does anyone know any good neuro surgeons in the Tampa FL area that night be willing to give him a consult to see him?
Thanks so much.