I have been having problems with my right side recently, and I felt a lump in the right side of my neck, so my doctor ordered MRIs of the brain and neck. I picked up a disc and results of the MRI to take to another doctor, but I read the results before taking to the doctor.
There was nothing on the right side of my neck, but the MRI said that what they thought was lymphadenopathy had decreased in size. I was shocked because that was where my AVM had been, and I had been led to believe there were no issues with lymph nodes. So I have been in anguish over the fact that there might be a problem with my lymph nodes, and possibly that problem is cancer.
Fortunately, I had scheduled an appointment with my ENT specialist when I felt a lump in the right side of my neck. His opinion is that it's more likely that either the surgeon didn't get all of the AVM or that the AVM is growing back. He recommended going back to the surgeon, which I am doing tomorrow.
I don't know how the decision is going to be make on this. Probably some type of an angiogram will be involved to rule out or decide if what is now in my neck is an AVM. But if it is an AVM, I'm not sure what to do. When I saw a neurologist in the Indianapolis area and asked for names of neurosurgeons who speciialized in AVMs, he gave me two names, but he said that he doubted that anyone specialized in ones outside of the brain. From being on here for almost a year, I know that there are people who handle AVMs outside the brain. But I'm not sure that I would want to go to someone in Indianapolis for this. On the other hand, there are doctors in Terre Haute who can deal with lymph nodes locally, but the possible consequences are greater.
I'm trying to put this in God's hands since they are mightier than mine, but it's difficult. However, it's much easier since I know that there are people out there dealing with the same issues I am.
All the best,
Debbie