Well, I had what was suppose to be a second opinion last week! I am so mad! The new Dr. just went with everything the first Dr. had to say. Now they are saying that I don't have an AVM... They are saying that one side of my brain is just bigger than the other and I was born that way. The new Dr. said that I am just depressed from something that could have happened from my childhood and I am holding it in. it just so happens that I have all of this other stuff going on in my brain at the same time???? What??? Amarillo Doctors are out on this one. I need a Dr. that knows about things like this. I had MRI and CT scans done in 1999 because I had headaches so bad I couldn't get out of my bed. They told me everything was normal. Well, if I was normal then, why do I have this stuff going on with me now?? Possible Colloide Cyst, AVM, hemorrhage in this area more than 3-5 days old... I am going out of my mind!
My Home Health Nurse thinks that I need to find a new Dr. and not say anything about the other Drs. and let them come up with something on their own. I just don't know where to go, or what to do. She told me some things in confidence about the Dr. that is treating me now and I have to say, I agree with her.... 100 percent!
Headaches that never go away, no sleep, can't eat, vomit, smells.... I smell everything 100 percent more than I ever did. Foot drop, I am getting stronger with PT, oh yeah... I still can't feel my toes!!
Heather, your medical records can be sent any where in the country to find a doctor to help you. one of my neurosurgeons sent a patients records all over the usa to find a doctor who could help him. I don’t know where he finally went but, his avm took up his entire front of the brain.
I went to Dr. Lunsford at Pittsburg Prespytarian Hospital, PA. They ordered an angiogram and went from there. I live 4 hours away from that hospital. I'm sure there are other Doctors near you who know more than the ones you have been seeing.
It's also possible they didn't look in the right area yet, of what could be causing all of your problems. Back in 1991, I was misdiagnosed by 5 doctors at 4 different hospitals, and one of them tried to tell me it was all in my head. It took a chiropractor to figure it out. I ended up seeing a neurosugeon and needed back surgery for a cyst in the middle of my spinal chord.
You definitly have something wrong that's causing all of your problems. It doesn't take a rocket scientist to figure that out. The best advice I can give you is: Be persistant and don't give up. Keep searching for a doctor who is willing to get to the bottom of it. Good luck and please keep us updated of how you are doing.