**UPDATE- We still are waiting on an appointment. His regular Dr on request of the specialist is ordering an MRI and MRA with contrast. The specialist wants this done before my son sees her. Hopefully insurance doesn’t drag their feet with approval. I do know the neurosurgeon he will be going to, from everything I have read about her- she is amazing! This makes me feel better! My son has started the medication for his tremors that the neurologist prescribed, as well as mega doses of VitD. A day after starting the meds he was extremely tired and cut his time short with friends to come home and sleep. I went to wake him up for dinner, and he had a really bazaar sort of hallucination. This went on even after me leaving him alone for a couple minutes and going back to him. Five minutes later, he didn’t remember any of it. Not sure if this was meds or not. I did find out that the location of this is somewhere in the occipital lobe. I say somewhere because in one part of the report it says medial right, and another it says medial left. (The MRI was done in the office of the neurologist he saw). You all have been wonderful! I really appreciate the stories, information and suggestions! It helps me more than anyone could know…
Hello Everyone, My name is Denise. My son has been seeing a neurologist for tremors he has. They ordered blood tests and an MRI. We went in yesterday to go over the results of the testing. We were told that his tremor was Essential Tremor. The Dr. then said that there was a spot in my son’s brain, and said it had been there since birth. I did not need this to be pointed out to me on the MRI scan, I could see it plain as day. He said it was Arteriovenous Malformation. Since I have had several close relatives with aneurysms , I asked it he was sure it wasn’t and aneurysm. He said “I don’t think so”. I asked if this needed follow up, or yearly scans or anything. I was told “no- nothing happens with these, we don’t need to follow up”. He said “the MRI tech. said that a MRI with contrast is needed, so I am obligated to order one”. He put him on medication for my son’s tremors, and said he’ll see him at the end of September to see if the medication is helping the tremors. I was infuriated when I got to my car and read what this AVM is and what can happen!!
Has anyone else experienced this from a neurologist?
I don’t know the size, location, or anything.
I put in a call to my son’s primary care Dr., and asked the receptionist if she could have the Dr. call me as soon as possible. Thankfully, she called by the time 30 minutes was up. Of course I was crying (I had been all day), told her what my son was diagnosed with and what the neurologist said. She said she would put in an urgent referral and request for an appointment with a neurosurgeon either in Syracuse, or Rochester NY- who ever could see him the soonest.
I am so scared for my son! Are his tremors cause from this? Are his memory issues caused from this? His vision problems at 2 yrs that required surgery at 4- could that be from this? So many questions, absolutely no answers and it’s frustrating beyond belief!