Hi Everyone! I was diagnosed with Chiari about a month ago. I decided to have the full decompression surgery as it explained a lot of the icky feelings I have been having over the last 2 years or so. My surgery is scheduled for a week from today!!
As I get closer to my surgery date and start reading more and more personal accounts of this surgery and recovery, I am getting nervous that I made the wrong decision to have surgery. I want to feel better and live the rest of my life with energy and drive and it seems like a lot of people are taking upwards of 6-12 MONTHS to recover and have tons of pain and issues. I know that 4-6 weeks post-op will be painful and challenging, but if recovery is more like 6 months or even a year, I would rather keep feeling crappy like I do now.
Don't get me wrong, I know that it's a major surgery and that even a year after there will be good and bad days, but I guess I expected the bad days to be fewer and from what I am reading, that is not the case.
I have two kids who rely on me all day everyday and I run my own business. I need this surgery to help me get my head on straight again, have MORE energy - not less, have LESS headaches - not more, feel LESS dizzy - not more, and be able to do things that currently make me ill (roller coasters, passenger in a car, somersaults).
Am I being unrealistic to think this is possible? Is Chiari a life sentence whether you have surgery or not??? Please share with me any positive stories, any success stories, anything where you feel good and happy and positive about your experience to have surgery. Thank you!!
I had surgery June 4th last year. I am glad I did. I still have a few problems but I don't regret my decision. It is major surgery so give your body time to heal. There will probably be a lot of re-adjusting to things. I was also thinking about our two daughters and my hubby. I want them to have me for a long time :). Remember everyone heals differently don't rush yourself though.
Everyone is different so it's hard to say how quickly you will heal. I had my surgery 6 months ago and bounced back pretty well. I still have fatigue and occasional headaches and other issues but they are much, much better than before surgery. I was able to leave the hospital the day after surgery and went back to work at 8 weeks. Prior to surgery I was unable to exercise at all, now I exercise most days of the week and hike and run on trails every weekend.
So while I'm not 100% I am much, much better than I was before. I have no regrets thus far and no symptoms worsened as a result of surgery.
**I want to note that I also have celiac disease, chronic mono, and ankylosing spondylitis. All of these conditions contribute to my overall well being and are most likely a part of why I still have some pain and fatigue.
I am glad I had the surgery and would do it again in a heartbeat. It took about 2.5 months for my headache to go away after surgery, the dizziness was gone after 3 weeks and I no longer have nausea. I do get tired out very easily though, at 3 months post op I can still over- do pretty easily. You should know that the healing process can be slow for some (although fast for others) and have a plan in place so that you are not trying to operate at full capacity for at least a couple months post op. I think you just know when you are ready for surgery… I was ready to travel to the other side of the galaxy if need be to have the surgery because my symptoms had overtaken my quality of life. Now, after surgery, my outlook on life is so bright! For me, this surgery has been one of the best gifts of my life! Best if luck!!!
From what i gather recovery varies enormously from person to person.
I was careful to only read the positive surgery stories/recoveries as i didnt want to avoid surgery etc,
However i feel its important that people are well informed and wish i had been better read on the more challenging side of recovery.
I have had a very difficult recovery, and i would have been much better prepared had i read negative accounts as well as positive.
Im off work for another month at least (im a nurse), mainly because its been a challenging 8 weeks so far!
Im not noticing the more positive side of the post-op period, the lessening of symptoms etc. But my NS was adamant i would notice that as soon as i woke up, apparently most people do.
I havent and he has put that down to my foramen magnum being extremly tight and my cerebellum being very swollen.
He said i may not notice any difference for some time and even said not to be despondent and he's in a year i would feel great! I just thought, a year!!
Its funny how quickly you get used to feeling how you do, i cant remember how i felt before exactly, i cant really remember how bad the headaches were, they are worse now though in this recovery period i know that. but if it works than whats a few months discomfort when the rest of your life is potentially so much better?
I really hope your's will be one of the positive stories and im sure you'll be fine.
Wow! Your comments really really helped (everyone's helped actually, but yours really hit home). "Keep in mind that the successes aren't necessarily connected to a support forum...they are off enjoying life" and "there is no cure for Chiari, surgery is only a treatment to stop the progression". Those two things are the comments I needed to hear and they are honest and I appreciate that! It's bittersweet to hear/read it but this is also all so new to me and I want to be prepared for the long hall. THank you!!!
Emmaline said:
I agree with all that has been said here...It's different for everyone. My recovery was log, but I'm 56. As my NL explained it, you cerebellum also has to heal from the herniation, so it is not uncommon for healing to continue for 2 years.
I didn't have immediate improvement, it was slow but steady...and I don't regret the surgery at all. I was going nowhere fast prior to surgery ans basically stuck in bed.I'm still improving, and on June 1 it will be my one year Zipperversary!
Keep in mind that the successes aren't necessarily connected to a support forum...they are off enjoying life. Don't let all the bad you see cloud your judgement, my NS said there was about an 80% success rate. It really depends on how much damage has occurred prior to surgery. Some damage can;t be undone. And also remember, there is no cure for Chiari, surgery is only a treatment to stop the progression.