10 years, 20+ Doctors= prayers finally answered. I just scheduled my decompression surgery with Dr. Heffez at the Wisconsin Chiari Center for June 3. I am excited to finally be moving forward with my life and getting control over the pain and sickness. Is it just wishful thinking or could it be the chiari and not fibromyalgia too? My hope is that my 9 year old daughter will finally get her mother back, happy and bubbly, not crying and stuck in bed. Has anyone flown to Milwaukee and had surgery? My husband said maybe we could drive but that is almost 13 hours there and then back after surgery. Not sure if that is a good idea. While flying in an airplane the pressure is horrible and I feel very sick but its only 3 hours. Driving as you know is difficult also My skull always feels very shaky like its not on right and every bump is painful. Any advice would be great.
Dr. Heffez did my surgery last year June 4th. He is a good Neurosurgeon and the staff at the hospital are all great.
Thanks girls 
Hi...
So happy that you have a plan set in place . Keep us in the loop on how you are doing.
No I have never been diagnosed with dysaotonomia. Wow I googled the symptoms. I usually have low BP,several stomach problems, sleep issues( take 2 strong sleeping pills that help)cold sweats and hot flashes sometimes one after the other within minutes. My heart sometimes pounds really hard and fast like after I get up from sitting or laying down. I will have to lay back down quick cuz I feel like I’m going to pass out. This in turns causes more pain in the back of my head. I sometimes tell my husband my heart beating hurts my head and neck… Crazy crazy. Do you think that could be dysaotonomia? I also have chronic fatigue, osteoarthritis in my back and neck along with fibro and CM. thanks love this group!
I have heard of Dr. Holman. Yes I had the extension/flexion MRI. It’s crazy, for the last year I tried a program called Fibroinnovation in Logan, Utah with Dr.Kingston. I was unable to continue the program because of my chiari. Every time I tried to do the traction exercise it would cause so much pain.( traction is this tool that hangs from the top of a door or ceiling that goes on your forehead then behind your head and you kind of squat down)not very good at explaining. Anyway the program has helped so many fibromyalgia patients. It deals with getting the curve back in your neck, correcting forward head posture(or position) and lots more. I hope after healing from surgery I can start the program again. Dr. Kingston spoke highly of Dr. Holman and Dr. Heffez. He told me to get the MRI extension and flexion but I could not get any of my Oklahoma doctors to do it. He is the Dr that recommended Heffez. I am so thankful he did. I have not been diagnosed with EDS or hyper mobility. I will check Dr. Heffez when I have my surgery. I love finally talking( or writing lol) with knowledgable chiarians. It’s been a long battle that I felt I was fighting with no one who knew what it is like including the Doctors. It’s nice to have support of others who know what you are going through.
Thanks Abby!