Good evening fellow Chiarians!
I just really need to vent more than anything! I’m so over this being in constant pain thing! The only relief I’ve had was the three weeks after my surgery two years ago. All of my symptoms returned within 1-3 months post-op. Today I’m worse now than I was before. I know two years is an unofficial benchmark for surgical success, I deemed mine unsuccessful from basically the beginning.
What frustrates me the most is that I can’t get any relief from the pain. With barometric pressure change I get headaches so bad that it feels like my face will split in two. Never mind the fact that I wake up with a headache/neck pain/back pain and go to bed with the same. I pop Aleves and Excedrins like they’re tic-tacs. The Neurontin my neurologist put me on does nothing except make me even dizzier. He is trying, however. I do like the man a lot.
Let’s not even talk about how I feel the week before my period! I literally feel like death. Then during that most wonderful week of the month I have debilitating cramps and such a heavy flow that it looks like a Voodoo sacrifice.
I feel stuck, I don’t know where to go or who to turn to. My family babies me so much that I do everything on my own just out of spite. I’m not an invalid. On the other extreme my employer doesn’t care that I have a chronic illness. All my boss sees is this tough-looking chick with dreads and tattoos up both arms that can schlep 100lb dogs by herself (I’m a vet tech). When my coworker called out sick all last week I was forced to be by myself, I assisted with well over 200 surgeries all alone.
Anyways. Thanks for letting me vent!
I'm so sorry you're going through this. My son, 23, has Chiari and had his first surgery at 16. Like you, the benefits did not seem to last very long, maybe 3 to 6 months for him. He's had symptoms off and on since then and his scheduled to have a second surgery in late August.
I'm wondering if certain things aggravate the pain, such as lifting 100 lbs. My son did weight lifting for some time too, with modifications, but I still wonder if this type of movement aggravates things. It's hard being sick with what is mostly an "invisible" illness, except for the outer scar. What does the doctor say about the symptoms? My son is also on medicine, max dose, and it does not do very much to ease the pain. The problem is scar tissue that can't be imaged, but we can see where the CFS flow is slowed and restricted. Have you had any images done lately?
Wishing you the best.
Sherri
I feel for your son. It’s hard to describe to someone else how painful CM is. I know exactly what he’s going through.
In my case I think my CM has been mismanaged from the beginning. I was giving very little education on the disease, just whisked off into surgery a couple months after diagnosis. During the initial MRI, we were looking for MS (huge family history) but found out instead that my brain had taken up residence in my neck. Everything I learned about Chiari has been through my own research. Now granted, I have an intensive medical background since we see CM in veterinary medicine as well.
My GP was really good at listening to what I was saying. She was the most helpful of all. She didn’t pump me full of opiates. I tried PT, didn’t help one bit. She’s the one that actually recommended to continue with my weight training…not the power-lifting I had been doing, however. Unfortunately since I’ve regressed so much these last couple months I haven’t lifted recreationally in a while.
I had an 8mm herniation and 100% blockage of CSF. I had so much damage and scarring before my surgery that my NS had to improvise. He doubted that I’d ever get above 10-15% flow. Not one of the doctors I’ve seen since has ordered a follow-up MRI.
My GP gave me a script for robaxin along with Aleve and that helped more than anything. No one here (Wilmington, DE) will do that. They’d rather pump me full of painkillers.