NS Appt

So frustrated. Had Cine MRI and still waiting for results. Need to compare last MRI to read. Love my NS but he, along with others say I don't have classic symptoms of Chiari and suggests I do a sleep study for my breathing issues. He has done many brain surgeries and Chiari ones. He even said Chiari surgeries are his favorite. lol But he would never do an unnecessary surgery. Which I am very thankful for. But so many NS say the same to me that I have a very mild Chiari and symptoms are not classic. Maybe because they only see severe patients? I don't know but still left frustrated. I hope my Cine came out normal, cause if not then he said he would like to do surgery to see what is going on, but as always still left questioning. I just pray results are normal. No headaches or numbness and tingling. Just the norm, for me, neck stiffness, ear ringing, some lite tremors. But normal according to him. Guess I will wait for CINE results and take it from there. He did say I should do a sleep study for my breathing.


I'm sorry you're so frustrated. Dealing with Chiari and different doctors can be hard at times. I'm sure your NS is a great doctor, but I suggest getting a second opinion from a Chiari Specialist, someone who only works with Chiari and it's related conditions. I, too, had breathing problems, ear ringing, and bad tremors; almost like seizure-like activity. Just because you don't have headaches, numbness, or tingling doesn't mean your symptoms aren't coming from Chiari; or that your Chiari isn't 'severe' enough. I know it's tough, but try not to stress. Stress aggravates the condition. Just try to keep positive, and always go with your gut instinct!



I know, I just can't wrap my head around it all sometimes. He has done many Chiari surgeries and doesn't want to do it if he feels I don't need it or sees clinically that I do. I just sometimes want to just follow my body and see what happens. He said if I wanted to then he would do and see if it gets better.It just scares me to death. Cause if my symptoms are not too bad now, might get worse if I want to have it as a trial and error. Ya know what I mean? Have you had surgery?

I know exactly what you mean. It's a scary thought, surgery. I was completely beside myself when I found out my symptoms were coming from my brain. All the thoughts running through my head if surgery was the right answer or if I should just wait it out. Unfortunately, my symptoms got extremely bad. I started having seizure-like activity around the clock for three days straight and I didn't have a choice but to undergo emergency decompression. After that surgery, I was okay for like two weeks, and then my symptoms returned-only because I have a connective tissue disorder and the surgery caused the bone that holds my head up to press into my spinal cord. The second surgery, though, was my choice. I could go forward with it, or wait until later in my life. My NS said, the longer I waited, the more damage was being done inside my head. My parents never forced me to do anything and we always discussed my choices together. It was the night before my surgery and I cancelled. Then, after talking to some other people who had the surgery and it was successful, I went through with it. I rescheduled and underwent Fusion.(He put bars in to hold my head up, and replaced the bone back in place.) Since then, I've only had headaches and every once in a while will I have a seizure-like activity episode.

It's scary. You don't know whether or not you're going to make the right decision. It took a long time to heal to get where I am today, and for me to comprehend what was going on in my body. I think the most important thing for me, is that I believed in my NS 100%, and he believed in me. That is crucial when deciding on surgery. I know I was only 14 when I had my surgeries, and that my parents are my legal guardians, but my NS assured me that I was the boss and he worked for me. He told me, it was my body, I had to want it and fight for it/fight to heal.Although, I suffered emotionally and physically with Chiari , I wouldn't change a thing. I am where I am today, because of my suffering;helping others and all in all a stronger person. Stay Strong and always go with your gut.

If you would like to read more about my surgery, you can go to my website that I'm currently working on and click on 'About Us.' www.screwedontight.com (:


Have you been on conquerchiari.org? they have great info on Chiari . I would go ahead and get the sleep study.

Yes, I think I've been on every website for Chiari! LOL I just feel like I have no where else to go to get help. I feel like a guinee pig if I go to a Chiari Dr cause they will just want to do surgery to see what will happen if I get it. It is just so frustrating cause I am always told it is mild chiari and my symptoms have nothing to do with it. I will do the sleep study cause it's one test I have not done yet.