I have my first NS appointment tomorrow morning. Over the last couple of weeks, I have compiled a list of questions to go over with him. However, it is now 3 pages long... In an effort trim that down a little, what are some of the most important questions (other than symptoms) to ask him?
So far, all I know for sure is that I have Chiari (9mm). I'm sure that he will need another MRI to see if there is any syrinx (sp). Based on my MRI, I suspect that I have crainocervial instability. But other than that, I don't really know anything else.
My appointment went well... I think. I really liked my NS and he is confident in his experience with Chiari. He deals with about 4-6 surgeries a month, which is pretty good. He did say based on my scans and quality of life he would recommend surgery. He said that we caught it pretty early despite the size of the herniation. He said that he has seen patients that get overlooked and misdiagnosed to the point where they are paralyzed and wheelchair bound. Before we schedule and put the surgery in stone, he wants me to have another set of MRI's (one to check for syrinx, a cine MRI, and then one to check out a lump in my neck that he found today). Those will be on the Dec. 19. After he sees those, he will decided 100% if I need surgery or not. My insurance changes on Jan 1 though and the surgery will cost me almost $10,000 more out of pocket, so I'm hoping to get it done before then, but we'll see.
He did check my joints to see if they were hypermobile and they were not. He looked at my MRI again and said that it is not likely that I have instability, but he will look the MRI over closer again before surgery. I asked him to check into other issues that could be related to Chiari before surgery and he assured me that he would. I have to say, of all the doctors I've been to, he has the best bedside manner by far.
Overall, I think it was a productive appointment :)
I am so happy for you. It is very important to feel confident in your surgeon. We were very happy with Barrows and believe they are the best in Phoenix! Please keep us posted.
Razzle, I saw Dr. Nakaji at Barrow (St. Joseph's Hospital) in Phoenix. He was wonderful! I know that Dr. Theodore is another Barrow doctor that is highly recommended, if you are looking.
I got my second set of MRI's back over the holidays. The good news is that I don't have a syrinx in my C- spine (he didn't check T or L spine though). They couldn't really tell what the lump in my necl was (which I guess means its no big deal...?). The CINE MRI showed that there was little to no CSF flow. Dr. N recommended surgery. I have an appointment set up on Jan 14 to go over what the srugery is and will be like. The surgery isn't scheduled yet. but I'm waiting to hear from the NS today.
I feel pretty good. Anxious about the surgery because I’ve never had surgery before. I just want some relief. I feel like I should have gotten a second opinion from the Chiari Institute or something… But I feel confident in my surgeon.
Sierra, I saw Dr. Nakaji and absolutely loved him. It was nice and refreshing to speak with a neurosurgeon and to be listened to and not treated like it was all in my head. Although I moved and was not able to see him any longer or have him do my surgery. It was a turning point after many years of trying to get someone to listen. It gave me the ability to keep fighting, knowing that I had at least one doctor that had listened to me. Good luck!
Sierra said:
Razzle, I saw Dr. Nakaji at Barrow (St. Joseph's Hospital) in Phoenix. He was wonderful! I know that Dr. Theodore is another Barrow doctor that is highly recommended, if you are looking.