Questions after surgery!

Hi everyone! Again, I’m fairly new to this site and I have what most of you will probably think is a very silly question but…has everyone on here already had their surgery for Chiari? The reason I’m asking is I had my surgery 9 years ago and still have a lot of problems, even though the surgery helped my severe headaches I was having every single day! Now, they are completely gone but I have other symptoms. I was under the impression (from my neurosurgeon) that once you have the surgery, you are completely rid of Chiari! Is he wrong or am I just a weird case and still have problems after the miracle surgery? My family seems to think I shouldn’t be having any problems since I underwent such a big surgery and I’m almost afraid to complain to them or to even my friends about any symptoms I may be having that day. No one in my family and none of my friends had even heard of Chiari much less what it involves, but after finding this site and reading some of the posts, I’m beginning to wonder if some of what’s going on with me is still due to Chiari (if you still have Chiari after surgery). This site has truly been a blessing for me because I’ve read some of the posts and know for sure that the person had the surgery and still considers themselves as having Chiari along with other problems. If this is true, it will be a huge relief for me because I’ve been feeling so much like a failure for having so many health problems for the past 20 years! Will we always have Chiari? Sorry for asking so many questions in one posting but I’m a little excited plus a little scared to find out what you guys are gonna say! I guess I need to read the first discussion topic on how to talk to people with Chiari and have a talk with myself!! Thanks everyone! Your support means so much! :slight_smile:

Thanks everyone! After I typed my questions last night, I basically had answered my own question! I knew, deep down, that I wasn’t cured. But all this time, I’ve blamed everything on fibromyalgia, which I was diagnosed with 7 years ago. But now I know that not all of it is from the fibro. I showed my mom everyone’s replies and she couldn’t believe it! All these years we really thought I was cured from Chiari! Now things are beginning to make sense and I don’t feel so stupid anymore! I think I’ve really been way too hard on myself because whenever anyone asks me how I’m feeling today, I would always say “fine” no matter how I felt. I don’t really remember a day before or after surgery where I really felt “fine”. If I’m not hurting anywhere, which is really rare, then I’m so tired I can’t get out of bed, so I think all the “fine” days are gone. That doesn’t mean I can’t enjoy my life or anything. I just have to learn a different way of living it and I’m so ready to do that. With all the pressure off of me now and knowing that there are people who feel just like me, I think I can start to enjoy my life a little better, day by day! Thanks all! You have no idea how you just changed the way this woman thinks about everything in her life now! God bless all of you! :slight_smile:

Abby said:


First of all, no your questions are not at all silly! You were right to come here for support. We sometimes get silly on here, but it might brighten up someones day here, so if we did that, then we helped someone that day.

Once a Chiarian always a Chiarian. You may have had what your doctors considered a success in surgery, but it did not take care of your symptoms. You still get fatigued, you still have visual problems, you still get probably some kind of headache, you still have many more symptoms that we have. By the way, I have not had decompression surgery yet. The surgery does put your brain back where it should be, but you still have many of the symptoms we undecompressed do or ask anyone on here who has had decompression surgery. They have plenty of symptoms.

You can ask anything you want to here, we aren't experts but we have educated ourselves enough to know, and you will too. Research and read books on Chiari. We have a failure to communicate with our doctors, they say you are cured, but honey, you are to a point, am I wrong in saying this? Do you still have problems and symptoms? Somedays do you want to just stay in bed all day?

So glad that you read that on How to talk to and Treat someone with Chiari. It really gets down to the real world of a Chiarian. It describes me right to the T.

Our medical doctors are great and want to help us, but still more research needs to be done on Chiari. We are un-researched, way down on the list, compared to other neurological disorders.

Honey, so excited that you feel that way. We do too. Having folks who actually understand us and what we go through.

Praying for you and know we are here for you too.

Love Abby