Hi....
Just throwing this out there....Do any of you guys that are decompressed (over 1 yr post-op) get the feeling that the people around them think that you should be 100%??
I personally get that feeling..though no one has come out and said it. I do not bring up my Chiari but there are days when I feel worse than others and it is hard to get things done.
Even 3.5 yrs post op , I have issues that wax and wane. can anyone relate???
Thanks
I am not yet a year post op, but I have felt that way with other issues in my life. 2.5 years ago I lost a baby boy and a year ago I gave birth to a healthy baby girl. So I am cured now and should not mourn my loss...... right? Nope that is not how it works. Any time you have been through a major life changing event, ie: your surgery, you will always have residual effects. You have to remember your body is no longer perfect in that area. There is muscle, tissue and nerve damage that resulted. Scare tissue replaces once healthy tissue. Not to mention the decompression surgery is not a cure, rather an aide in allowing things to be better. So you are allowed to have ups and downs. You may need to remind those around you who make you feel like you should be 100%. There are going to be days that swelling naturally occurs and so you will feel more symptomatic. Be gentle on yourself and just know you are better than you used to be and you are doing the best you can with the circumstances you have been delt....... Sorry if that was too sappy of an answer. I'm kind of in a sappy mood today =)
Yes, here too. No surgery but with my daughter's CM issues...well, let's just say my husband and I rely on each other more than ever as so often others don't want to be brought down (we do not bring it up ourselves or talk at length about it though).
I recall when my sister died suddenly a few years ago, friends were sweet and supportive for about 90 days. Beyond that it seemed to be too much for them. BUT THEY WOULD AS HOW I WAS DOING! I recall someone saying, at the 5 month point: "Oh, you're still upset over that?!" I started to say: "fine" whenever anybody asked how I was (or am) doing but they dig deeper...then judge anyway! AHHH!!!
Why some ask if they are just going to critique the answer, I'll never know.
Just take care of yourself and hold on to those few who give the love you'd give if the roles were reversed. As for the others, they might never understand...until something turns their world upside down.
I'm with you Lori !!!!
I am much worse post op since 9/26/2005. It's very disheartening at times. In fact I haven't been on a lot lately, because of weather changes that make me feel like a bowling ball is on the back of my head and neck. I am just having a bad week I think. My Mom has had her breast cancer come back for the 5th time & she just had Gamma Knife surgery to take out two tumors a couple of weeks ago & now there is three more. My father has been in ICU for two months because they put adrenaline patches on them when they went on missions as a Navy Seal in Vietnam. The arteries to his heart are paper thin. As you know it is very hard when you have ill family members. I am just having a bad few days. Family is hard sometimes especially when you are a Chiarian.
Tracy Z.
I will be five months post op and I feel like everyone thinks that I should be "cured." I wish that was the case! Hang in there. When family and friends don't understand, I come here! Hope you are feeling better :)
I also feel like people just assume that I am fine now that I had a surgery. So because I don't need to run to the ER for headaches since surgery doesn't mean that I am fine. I still have appointments and medications and I still hurt. People who don't really know don't get it. That includes doctors, family and friends. But that is what ya have us for....we all understand what you are going through! Hugs!
Crystal
thank you all for your replies
makes me feel as though i am not alone in this\
i know i am not the only one who is dealing with issues mths/yrs after surgery
it is just so damn frustrating some days/ like today
you guys are great
thanks so much for always being here
xoxoxo
Today is a bad day decompressed in oct but weather allergies I am just going back to bed wish you all luck
It's funny you should say that. I meet with a neurosurgeon tomorrow, and one of the questions on my list is "would surgery help me from getting any worse?" Makes me feel like I'm on the right path. Thank you for sharing that.
Becki Bowling said:
I just scheduled my surgery today so I don't know how it is on the other side but something my NS told me today really stuck with me. He said patients are looking for surgery to make them better. Doctors are looking for surgery to keep them from getting worse. He told me a lot of my symptoms may not improve and some will but that the surgery will hopefully keep me from getting worse. Not exactly what I wanted to hear but I appreciate his honesty.