How has chiari affected your job?

I’ve been a hairstylist for over 20 years and am newly diagnosed with Chiari. Very symptomatic and feel surgery is inevitable. (Seeing second opinion from another neurosurgeon next week).
I’m curious to hear from other hairstylists, and others who have physically demanding jobs, about how Chiari has affected your work. I assumed I would be behind my chair for another 15 years. But with the symptoms I’ve been having, the research I’ve been doing on Chiari, the personal stories I’ve been reading, I’m wondering how realistic that is.

I work full time and it is exhausting. By days end the pain is bad and hard to think. Seeing headache doctor. Hopefully it will work if not then surgery.

I have worked in horticulture and as a musician,but I have lost my ability to do either.My memory and physical ability has gradually stopped me from doing both of these to a huge degree.Chiari has also taken the enjoyment and income from me by being active in these and other things .This is a cruel ailment ,as it is misunderstood by many,even those in the medical field.We are all effected to different amounts, and as such, nobody really knows how our lives will change.I hope surgery is successful for you ,if that is an option.Failing that,lets hope someone finds a cure.Soon!!!!!!!

I have an office job which I became unable to do… Was then diagnosed with Chiari. I had surgery 1 month after being diagnosed. Best decision ever!!! It’s been 4 months now and I feel like a new person. I suggest finding the best surgeon and having the surgery.

I was not able to return to work post surgical but had an extensive situation. Many Chiarians are able to return to work. Everyone is different. Don't give up hope.

Btw, my dr is Dr Wesley King in Beverly Hills, CA.

Also, if you want to know what your ability is after surgery… Everyone is different but someone from the Winter Olympics had a Chiari, had the surgery and is back doing their sport. Can’t remember her name but I’m sure you can google her. She was on good morning America about a month ago.

I am a stay at home mom to my little ones. I had surgery 6 months ago and do not feel like myself at all. I can’t do many things like bending over, lifting things, standing for too long and showering just to name a few, all give me extreme dizziness and headaches. Today I feel so bad that returning to work is out of the question. I agree, everyone is different and we all have different ongoing symptoms, some more tolerable then others. Many well wishes to you.

I am a dog walker and also work on the computer for my other job. I've had a decompression and dura plasty in 2007 and 2008. I have to say that for a good four years after surgery I felt good. But At the end of 2012, all my prior symptoms returned. I have tow children and a husband that need me so I just push through each day. I do not seek pain medication since it's addicting and troublesome to the body too.

I am going to look into taking medical marijuana when it becomes legal. the nice thing about that is you can put it in baked items or tea instead of smoking it and wrecking your lungs.

Maybe one day the medical field will be more sympathetic to us but for now I feel we have to be our own advocates and be smart and be strong for ourselves.

I wish you luck and keep all of us posted on your Chiari journey.

Best wishes,

Guido - a.k.a. Lisa

I had decompression surgery a year ago. Prior to being diagnosed, a worked as a full-time accountant. I have worked part time since doing less challenging work and that is all I can handle. I did take a temporary accounting role in December and was unable to keep up and it was overwhelming. I would love to be able to go back to work but have come to accept that may be impossible.

Hi everyone I haven’t posted any comments since December but I just wanted to say that I saw a wonderful NS in Colorado who gave me a great plan that may or may not include surgery. The first thing he said was that I needed to address some underlying conditions to have a better success rate if and when I have surgery. First thing was to address my occipital neuralgia with Meds (Neurontin). Very few side effects actually I am not experiencing any!! Second thing was to decrease my headaches the frequency and duration of them by going on the Paleo lifestyle. That has increased my energy, I have lost weight, and my headache frequency has decreased. The third thing was to make sure I surround myself with positivity. I hope all of that helps someone because it has helped me get though!! :slight_smile:

hi yoga girl lucky for me I dint have to work I don't believe I could I had surgery in 2012 and I still have a lot of trouble with my chiari a lot of my activities I don't do anymore I have tried but its to hard on me

Great discussion, Yoga girl. Due to the various symptoms of Chiari, my position at a very stressful job (which required a lot of traveling) is now being replaced. Like many of us, I have worked hard since I was old enough to work and it is challenging when that whole idea needs revamped in my head. Your whole life is turned upside down. My doctor wants me to apply for SSDI and I don't even know if I have the strength to begin that fight. Every day I am pondering other types of work I would be capable of long as they don't require much detail or memory :-)

You are in the right place and this group is a blessing to know we aren't alone.

I’ve been on disability for 4yrs now. After my chiari surgery I feel worse. What they don’t tell you is that when they take most of your c1 vertebrae off its hard to even hold up your head up. My neck pain is worse and my headaches no better. Good luck to you

Hi ! and welcome,

i´m 23 years old and i can say that some days isnt easy, but im always thiink that everithing is about try! and life xan surprised you with what you can do !

10 months ago i was diagnossed and had my descompression surgery, that hurts and can be a bit scared for moments , but i think you need to trust in you and your doctors and be positive!!! everything is going to be ok ;)

which ones are your sympthoms?

Hello all,t

I am a dealer at a casino and I have to explain ALL the time what is wrong with me and I am looked at like I am crazy. I am only 40 and I hate feeling this way. My boyfriend thinks that I am using my illness as an excuse to not want to do things. This Chiari is ruining my life. I do not have insurance for the surgery now because of Obama care. I am struggling everyday just to work and do my homework, I go to school online and its hard to be on the computer for an extended amount of time.

I have FMLA for my job but, I am sure that they get tired of me using it. I have only used it a few times but the company I work for, well they are just that; a company and they have a company to run. I am replaceable. Mississippi is a right to wok state, I can be fired for any reason.

Dizziness and headaches are a constant and I am taking Dramamine all the time as well as tramadol. It helps me enough to get through the night while I am at work. I am looked at like I do not want to work. The constant moving is what causes the dizziness and the headaches. I take it before I go to work in hopes I can make it through the night!!

I hope one day there is something that can be done with out the surgery.

Wishing all of you a pain free and blessed day.

Hi Yoga girl, I wish you the best on your journey. A second opinion doesn't hurt, make sure you are meeting with a neurosurgeon that specializes in Chiari. Think good thoughts about it, many people see a huge amount of relief from their symptoms and continue with work. Others it takes longer to bounce back. It seems like children are most resilient after decompression surgery. My son is doing great after his second decompression surgery finally. It has been 2 years, and 1 year since the removal of his vp shunt. His syrinx has almost completely disappeared! It was a very, very rough road for him through it all. Stay positive!

I am 51 and I worked as a Physical Therapist Assistant for 15 years in a busy sports clinic. I had to quit in the summer of 2011. The last few years that I worked were torture. All of the running around, stretching people, bending over made my symptoms horrible. I would have to come home and go right to bed. Unfortunately, I was misdiagnosed for so many years and did not find out that I had a Chiari until last year. I had a decompression/duraplasty 5 months ago. I still have a long way to go in this recovery and really don't know how much I will get out of it. My headaches are better, but I still have dizziness, vertigo, tinnitus and neck pain every day. I do some marketing at home for my former boss, but that is about it. My daughter is expecting a baby any day now and I am hoping that I can help her out. I guess time will tell.

I am 38 and was diagnosed Feb of 2013. I am a Radiation Therapist. Had a great job. I knew eventually I would not be able to continue to work. My job is physically & mentally demanding. Delivering high doses of radiation to cancer patients and the constant transferring of patients took a huge toll on me. Most days I felt like a zombie, towards the end everyday was an effort and I was experiencing more symptoms. I recently stopped working, about 6 weeks ago. Since then I feel a world of difference. I am a new person. I still have an array of symptoms but they seem soooo much more manageable since I no longer work. I am lucky in the aspect that I have a short term disability policy that will help me for 12 months. In the interim I will be applying for SSD. I am fortunate for as my husband and family are very supportive.

I read someone’s response but how Misunderstood this disorder is. That is so true. We all suffer from so many different symptoms some that come and go some that stay but there’s always something that is wrong. It is difficult trying to explain to someone what it is you have and how you feel. To an outside person we look normal, but we never feel normal.

That is true Gypsy, I hear it all the time about my son "wow really he had all that surgery, he looks so normal and fine". He is now doing really well but still has a few side effects...he has random puking that I was told would be a life long side effect of brain surgery, his gag reflex is REALLY hyper -just trying to brush his teeth is a challenge, he has a big decrease in upper body strength and he gets more tired out easier than other toddlers his age.