Well, most of us definitely cant do the limbo without the worry of our brains popping out but having Chiari is much like a balancing game. After all our doctor visits and second opinion doctor visits, and for some third, there comes a point when you just give up on doctors.
Currently in my Chiari journey, my back pain and other symptoms are too bad for medications to even scratch, but its not bad enough to warrant surgery. Thus a state of limbo. So, what do we do?
I am currently applying to University's to become an Architect which will involve bending over desks for hours upon hours everyday back in a studying environment. The thought of sitting in a classroom in the same amount of pain I felt in high school does not make me want to jump for joy. So what are my options?
Many of us are in the same situation with the same problems such as going to work and the normal day to day activities that people often take for granted when they can do it pain free. So, heres my question, what did you do? When Chiari holds you back from life what did you do to help it?
I know uni starting times are different in other places and in Australia, we are mostly behind so anyone with chiari new at university? Help a brother out (and other 'brothers' who might have the same question) and if possible, share your experiences.
Thanks for all the help, I hope everyone has an amazing Christmas, eats far too much and enjoys some down time with the people they love. Best of wishes for the new year everyone!
If meds don't help with it, and it interrupts daily life and life's plans, especially careers, I believe surgery may be the answer. What else could you do if pressure on your brain stem and spine is the problem.
Emily, my first thoughts after reading your post were in line with DC. If your pain is untouched by meds why aren’t you a candidate for surgery? Only because I don’t know of another way to try to change the Chiari symptoms, I think surgery. Especially with your hypermobile symptoms, if I were you I would research some Chiari docs who also surgically fix instabilities, just in case you need it. If you don’t want to have surgery then that is another situation altogether, but if its an option for you and you just happen to have gotten a hold of an NS who doesn’t “believe” in Chiari, then keep looking.
Thank you both for the replies! I am all for having surgery, not that I particularly want to, but theres nothing left to do or try. I went to see the only Chiari specialist in Australia and he said that surgery just wasnt on the cards. The same goes for the neurosurgeon that I saw before him. I do understand where they are coming from as the MRI's dont look terribly crowded. Its just frustrating but I think I'm at the 'grin and bare it' stage until either I get new symptoms or things get worse for a doctor/surgeon to do something unfortunately. Im quite hypermobile so I think although some of my symptoms are chiari, like the classic headaches, I think the brunt of the back pain is the hypermobility so I should probably do more research into that.
Emily, there are 3 doctors in Australia in the member recommended doctors list, and a couple in New Zealand. As far as day to day coping…there are a couple things that I do that me feel better. The first is that I wear a soft cervical collar all day, everyday. I have been wearing it since June at the recommendation of my NS. I have hypermobility issue too, I believe I have CCI. Since wearing the collar I have not had a severe headache, it limits the amount of flexion and extension you make your neck do. The other thing that helps me is to try to keep my attitude as positive as possible. I have days I feel sorry for myself, and I think some of that is ok, but those are the days my symptoms feel worse. Keep you spirits up, you are not alone.