I don't usually write on here but, I have benefited from reading this life- saving page. But I thought it is selfish not to share my experience as it might help someone else who is struggling and feels no hope with this invisible painful diagnosis..
This has been a very long journey just like for everyone with a Chiari. I found this discussion page almost 4 years ago and it has been a lifesaver to know that my symptoms aren't crazy and that in fact part of this brain malformation. I was diagnosed 6 years ago when I had one of 3 TIA's(transient ischemic attack). At that time they found out I had a congenital heart defect and then they did a MRI and diagnosed me with a chiari malformation... but that is where this journey began.
I have suffered from dizziness, fainting, debilitating migraines since the age of 13 and was told that I had everything from hormonal headaches, cluster migraines to one doctor even trying to take my license away because he thought my headaches were mini seizures. Ridiculous!! Meanwhile, I bounced around from neurologist to neurologist... medication to medication, with some medication actually causing seizure like behavior. All the while doing my best to start a career and raise 3 very active boys(2 of which are twins). And then... finally...
I went to a doctor in Los Angeles who I had so much hope that he would help me because he was renowned in helping patients with a diagnosis of Chiari. I went home in tears as he told me I didn't have a chiari and that I just needed to do neck exercises... I'm not a woman who curses but COME ON!!
Ok. then... I found another doctor in Colorado who specialized in chiari and he actually listened and confirmed that I indeed had a chiari and that I also had occipital neuralgia and gave me a plan to try to manage it. The plan consisted of exercise, diet (paleo diet) and a great referral to a pain management doctor. I adhered to this plan religiously and saw some improvement with my symptoms and I was able to eventually return to jogging ,my beloved 10-15 miles a week with my dog! Success!! I thought... until I started having severe symptoms memory loss, dizziness, instability, depression, severe headaches and the most recent fun event chest pain and fainting.
So now again I pursued with relentless resolve to figure this out again... and now finally... and I mean finally... I again found a doctor in my home state of California who listened... emphasized and confirmed that I have a 7mm chiari no syrinyx but that it requires surgery and reassured me that my decompression will will be the least evasive way because he is not opening the dura which can cause infection even meningitis.. YIKES!! so.. my surgery is set for July 19th and I am ready and hopeful!!
Hi, Mickey! :) I'm Kristine, I had my decompression one month ago. My dura was opened and I also had c1 laminectomy, but my doctor found out tha it was necesary during the surgery. 2 weeks after the surgery I already felt improvements. Now my pack pain is gone, my head isn't as sensitive anymore( in a car, every bump or hole felt like a hit to the head), and some other symptoms that I can't remember now, are gone. haha
My csf flow was blocked in the back, with only one tonsil herniated 5mm.
My recovery had been VERY painless! Reading Chiari experiences, I thought it would be painful, but it wasn't. I was in the hospital for 5 days and after that I had to go back and stay for another 10 days, but my stay was optional, but recommended. Since I'm home, I've had the need for pain meds only one time. :) Before the surgery, I didn't have headaches in my opinion, but some of the symptoms I described to doctors, were pain in their view. What I'm saying is, everyone is different and there are more positive experiences than we can read about.
Hi Kristine! Thank you for your well wishes and it so warming to hear that you had such positive results and that you are doing so well now! I can tell you have a positive attitude and I'm sure that helped with your healing and I am hoping it will help with mine.
I have c1 as well and am just 4.5 mm herniated but have been having severe symptoms over the last month that sent me to the ER last month which is when my C1 was diagnosed. I am having my surgery on the 28th of this month and am extremely nervous as well. Please keep us posted as well as best as can be expected. :)
I will keep you updated.. it was so interesting my hospital administrator(case worker) called me yesterday and gave me some really good advice to make sure that I get my team around me that contribute to my healing and to have someone who really knows me and feels comfortable telling people to go and to let me rest when I need it. That was really good advice and it took some of my nerves away. I am hoping your surgery goes well and that you get the relief you need.
I don't usually write on here but, I have benefited from reading this life- saving page. But I thought it is selfish not to share my experience as it might help someone else who is struggling and feels no hope with this invisible painful diagnosis..
Thank you on behalf of everyone here, Mickey! This is a peer-to-peer network, and it only works if people reach out, tell their stories, and support each other as you have done.