I can very well relate to you with all the symptoms, I am 11 weeks post op from my 2sd decompression, because the first one was not done complete and properly, so don't go with just 1 opinion, I saw 6 neurosugents before I decided who to go with... You need to do your home work research a lot and find a good neurosugent that understands all aspects,everything related to Chiari and also Phesudortumorseribry, Craniolcervical Instability and Syringomaelia, it is very important they understand all issues related to the Brain,I didn't know much when I had my first surgery,and this is why I had to go thru 2 brain surgeries...also if your doctor is not really familiar he will discourage you...Good Luck and do Your Research even if you have to travel to get to a good doctor,lots of people on this site just like myself have traveled,to get the rite care.
Good morning, I am sorry to hear about your experience, and I hope the support here can comfort you. As Nella says, research, research. I never stop reading about the brain - especially about chiari and the related issues. My first appointment (with a non-chiari specialist) discouraged me so much. It was my general practitioner who really encouraged me to seek more medical care for my pain. I am sure you know about the list of specialists on this forum. It is a collection of surgeons who have treated others on this forum. Depending on where you live, you can try to find one; however, i travel from the very southern edge of NC to see my doctor in NY.
At the same time that you are researching for specialists, there are two key things to help you when you do finally find a good one. Keep a very specific pain and symptom journal - dates and mention of what activities may have contributed to them. With it all in writing, you will not have to remember everything you want to say when you are in an appointment. You don't want to come home and realize that you forgot to tell the doctor something important. For me, it is always amazing how good I (think) I am feeling when I do see the doctor. The other thing that is important is to keep a file of all your test reports from MRIs - even the disks from the studies. Ask for one at the time of the procedure so you do not have to go to get it later. I hope you can get some comfort from visiting this community. I know that I do. There are very caring and knowledgeable people here. Keep current with your status so we can continue to help you.
Hello ~ Ugh I know its frustrating! Thats exactly what the neurosurgeon I saw told me. I also felt annoyed, he did start me on topamax, which helped for a while. I can however appreciate him not wanting to operate when they are not 100% sure its the chiari causing the symptoms, but I kind of felt brushed aside. I agree with the above posts - seek out a specialist. Thats what Im doing, they understand this condition the best.
I watched some video lectures by Dr. Oro that really helped me.
Hi.....this is such a common complaint that Drs we go to see do not feel our Chiari is causing our symptoms, but they do not seem interested in find what is if it is not Chiari....
AS for the size, it can still be Chiari causing the issues....get copies of your MRI's and CINE plus the reports....go to the facility that did the testing and ask for copies...going forward always get copies of both the test and report...this will make it easier to get another opinion......
For some of us, the tonsils are herniated more when we are upright and many of the MRI's and CINE's are done with us lying down so they do not always give accurate info...but a true Chiari specialist can tell by looking....and there are related conditions and issues that can cause many of the same symptoms...a Chiari specialist will know what to look for.
I felt just like you like I was going crazy....you are not alone and you are not crazy.....find that Dr and keep us posted on your progress.
thank all of you guys so much! reading your comments and listening to your input definitely made me feel a lot more sane. I'm just blessed to live within three hours of both chicago and St. Louis so I guess I'd better start doing my research on more NS!
this community has already taught me so much and has made me feel like I'm not alone and I greatly appreciate it!
Your response above made me smile. I am happy that we could help you. Stay strong and focused.