Chiari Online Support Group

Feeling helpless

I have been feeling ok for the last couple of months but then today I am feeling so sick. Constant dizziness and feeling nauseous. And now I have been feeling a lot of pain in my neck and of course a headache. I’m so tired of never feeling well. I was diagnosed with CM1 back in June with a 8mm herniation. I do not have an appointment with a neurosurgeon until January 20! I’m tired of missing out on everyday life. Sorry to be such a downer but if I talk to my husband about it, he will probably be thinking I should just get over it!

momoftwo, this is a safe place to vent, so please no apologies are necessary. Members here can relate and understand. I am sorry you find yourself frustrated with the unpredictability and pain. It can be challenging. I have developed a few coping strategies for breakthrough pain that have been helpful. I use visualization techniques and meditation as well as breathing exercises. I was cynical when these things were suggested to me at first years back, but I have found them to be invaluable tools for coping. Feel free to explore these methods. I hope you are able to get through this rough patch soon.

Hugs,

Laurie

Thank you for your kind words. It is nice to know that I’m not the only one out there that feels this way!

You aren’t alone and waiting just a few days for a doctor app is enough to drive one crazy, so I can only imagine waiting until January seems like an eternity away! Have you tried another neurosurgeon? Maybe you can get in earlier, but keen your January appointment as a second opinion appointment. I’m having my THIRD opinion appointment on Tuesday.

Thanks Katrina. What were the opinions from your first and second appointments? Have not tried another surgeon yet but will look into it. My appointment in January is at U of M with a surgeon who specializes in this and it is at a teaching hospital so they tend to do a lot of research and listening to patients, I hope! As you probably have found, there are not a lot of doctors who specialize in Chiari. Good luck at your appointment!

I feel your pain. I too have an 8mm herniation and was diagnosed just two months. I’m nauseated and dizzy and get the headaches like you, along with a terrible lump in my throat. Have you tried placing an ice pack (soft one) on the back of your head?? It helps to relieve pressure back there for me… And usually calms down the nausea and dizziness, at least for a couple of hours. I completely sympathize for you & also waiting to see my NS again. I have no idea whether I’m getting surgery or not. Try to take each day at a time and know you aren’t alone!

They found my CM/9mm immediately when I suddenly became dizzy. The ENT, neurologist, and 2 neuro surgeons all said it was my vestibular system (inner ear, brain, eyes working together) and not chiari. After firing the ENT because he wouldn’t give me the attention I need and am paying for, I engaged a new ENT that didn’t think it’s vestibular at all (the numbness in the entire body is a pretty clear clue!). The first neurologist also felt my care should be managed by an ENT and ran me through a cardiologist to rule out any issues with blood pressure from heart to brain. Good news is 1) I have a brain, 2) I have a heart, 3) my ticker works great!!!
Now, in all of their defense (except the ENT I fired, because his care and office are inexcusable) my symptoms have changed a TON since I saw these doctors in June.
I am going to go back to neurosurgeon #1 to get a second opinion after I see neurosurgeon #3 this week. Sounds counter intuitive but if he thinks that I’m now a surgical case, then I would feel better about proceeding with surgery…which in my case, I think is inevitable.