In everyone elses opinion, when do you think the best time to have surgery is? Im getting to that point but i know my doctor will try and talk me out of it. My mom says shes just doing her job but i just want it done at this point. I would like some other imput from people who go through this though and actually understand better then anyone.
When to have surgery is a highly personal choice. If your doctor has ruled out other conditions that could cause your symptoms then I would say when you can no longer lead a full life due to your symptoms. Of course it also depends on how your condition may progress, waiting too long can lead to permanent damages so if things are progressing fast sooner is probably better! Always remember than surgery is a treatment and not a cure. Results vary. The majority of people will see improvements post-op but will likely have some residual issues. It's best if you go into surgery knowing this! I'm not trying to be discouraging, I just want you to have realistic expectations! I have no regrets on my decision to have surgery and feel I've gotten a huge chunk of my life back!
Best wishes with whatever you may decide! Keep us posted! :)
My symptoms have progressively gotten worse and people around me say im not the same person i was two years ago. Im just affraid ill change my mind or my doctor will talk me out of it when daily i just cant take it anymore. i work through the pain cause thats the kind of person i am but i dont wanna have to just work through it. ive read and heard all the down sides of surgery and done all the possible research. i just wanted to see what others had to say so maybe i could reassure myself it was the right choice so dont worry about any discouragment what so ever. i want peoples full opinion and advice so matter what it is! thank you!
Hi Kenzie, I am 3 weeks post op and I can say that if your symptoms have progressively gotten worse than it may be in your best interest to have the surgery. Anglyn has given you some great advice as well. I made my decision based on the fact that I did not want to live the future with permanent damage if I could prevent it.
I also do not regret having the surgery at this point. I will be honest and say that it was the most painful experience I have ever been through in my life. But after the first 2 weeks it has been all down hill from there. So far I have not had any complications or problems. Make sure that you are comfortable with your surgeon and his surgical abilities.
That really helped to! Surgery is definently where im headed
Hi, I have a 17yr old son that is in your same boat. He was just diagnosed a few weeks ago. He has been suffering from migraines for the past three years. It was a fluke that his 7mm CM was caught on a recent MRI. He does have anxiety and IBS, didnt know they could be related. We saw our first NS that said he should do surgery when he is ready, but after many conversations with people, one of them a freind that is a cardiovascular surgeon who is familiara with CM. Suggest we get it done sooner than later before he developes further non reversible problems. We are waiting for an appointment with a Dr. At the highly regarded Barrow Neurological Institute here in Phoenix. I completely understand where you are at and will keep you posted and let you know what the new NS says once we see him.
well ive been going through this for years so if your son needs or wants somebody to talk to id be more then happy for talk to him. I get very overwhelmed sometimes. It really shows what ive been through when people say im a different person and then magically i wake up one morning and im my own self. cause im not in so much pain. even on those days i dont have complete relief. im so glad i joined this sight. it really does help a ton. Sometimes i wonder if itll be worth it to have the surgery cause ill more then likely miss the beginning of my senior year but i am so young so maybe its the best choice. Dealing with it can be very depressing. Im still having a great summer but im not completely the happy person i used to be. Your right. why wait? i cant find any reasons really.
Hi Kenzie,
I am 42 years old and had my symptoms since I was 15. If you have Chiari and you are symptomatic, I strongly believe that surgery can be the right course of action. The problem is that you need to find the right surgeon. Someone who knows more than just the brain; more specifically, Chiari. If you have Ehlers Danlos, intracranial pressure, etc. surgery could cause you more problems. If you are cleared by a highly qualified Chiari surgeon, I would predict that surgery would be of benefit to you. With that said, there complications with surgery and sometimes things don't work out. This is a very personal choice. I wish I had had surgery sooner, but I would also want to take the time to find out if there are other possible problems that could be connected to Chiari. Wishing you the best!
Jeff
Thank you so much. I have an appt July 25 to talk to my surgeon about having surgery and I made a list of my symptoms in detail so well see what she says! I’m very comfortable with her doing it to! We have been to many different doctors and all my other symptoms seem to be related to my chiari so I’m just ready to have the surgery.
Love the fact that you have a female NS. You don't find many. Can you tell me her name and where at?
Dr. Khorasani at the University of Chicago Hospital