Yesterday I saw Dr. Ringer at the Mayfield Chiari center and was very impressed.
Prior to my appointment he wanted a CINE MRI but as he is out of network insurance wise he wanted my doctor to order it and she was hestitating. They were really awesome to send her a bunch of literature and explain what the test was, what it would show, and how to order it. I thought that was really nice because most doctors would have just ordered it and not worried about how much the insurance would pay but they went out of their way to make it more affordable.
Everyone in the office was really nice. Dr. Ringer was friendly, took his time reviewing my MRIs, and explained things really well. As it turned out my CINE was a bit of an anomoly. My flow is not blocked but it isn't flowing with every heartbeat like it should. It pauses for several beats then has a high velocity gush and then pauses some more. He is going to have the other doctors at the chiari center review the MRI and decide from there whether the benefits will outweigh the risks on surgery. If they decided no to surgery he wants me to have CINE MRIs every 6mos to a year or if my symptoms worsen. Should flow become completely blocked then surgery would definitely be scheduled. I think this all sounds very reasonable.
Whichever way they decide I feel like I can trust their opinion! I'm just so elated to FINALLY see someone who took me seriously and had a clue what they were talking about. I've been told by so many doctors that Chiari doesn't cause symptoms at all and made to feel like I was crazy or a hypochondriac. Dr. Ringer listened to my symptoms and explained what caused them when he could! When he couldn't he didn't dismiss them. He was very down to earth and said he has heard patients complain of so many symptoms that he would've have swore could not possibly be caused by a chiari malformation and that disappeared after surgery.
I am so happy for you. There is nothing like the experience of someone listening to you and finally trying to help after all that we go through with other people and health proffessionals. It sounds like you are in very good hands and now also have an advocate to help you with your other doctor. They will listen to each other alot better than they will listen to us. (unfortunately) It does make you feel like you are going crazy or in an alternate universe sometimes when you are clearly suffering and you are told that your symptoms don't exist or aren't from Chiari. My NL didn't believe my symptoms for 6 years until she started seeing them in other Chiari patients. Even then she thought I should just toughen up. After I was diagnosed my councilor said "They told you it was all in your head...now they are right" LOL
You must feel so relieved. I am really happy for you. Please keep us updated.........Wendy
I am happy to hear that things went well... I hear wonderful things about Dr. Ringer. He actually did Joy's surgery, she is on this site as well. She had the surgery just over a month ago with him. I am with Dr. Zuccarello with Mayfield. My surgery is this week.
Please if you have any questions or anything let us know. Would love to be able to talk to you more about Mayfield :-)
Any update? I am really wanting to know what he told you. As Mendy said my surgery was June 4 with Dr. Ringer. I am just really curious to know what you have been told. I am certain he thinks I am crazy even though I obviously needed the surgery or he wouldn't have done it. I surely didn't do it for the fancy hairstyle it gave me. =)