Chiari Online Support Group

New to the group- 3 months post-op

#1

Hello everyone. I am new to the group and very happy to have found a support network. I will try and keep my story brief. I was diagnosed with chiari malformation in July 2018 and underwent surgery two weeks later, as I also have a syrinx that was growing rapidly. I found out right before surgery that my chiari was discovered on an MRI back in 2015 when I was pregnant, but the OB and neurologist never told me. I had a very complicated pregnancy and delivery, and now I know why. Anyhow, prior to surgery I had severe headaches starting in the back of my head and radiating to the front that never went away, pain and tingling in my arms and legs, constant nausea and vomiting, floaters, and nystagmus. I had a decompression with duraplasty and C1 laminectomy. Initially after surgery I was doing much better. I was also started on gabapentin to help with pain. I started having side effects- cognitive slowing and mood changes- so I was weaned off. But the pain was too much to tolerate so I was restarted on it. Last week, I had a sudden recurrence of chiari type headaches. My neurosurgeon was super unhelpful and basically told me to go to the ER if the “headaches were really that bad.” He refused to see me and said it was “nothing that he had done” so he would not even order imaging just to make sure. I was very irritated. I saw my neurologist this morning, and she ordered an urgent CT once she saw how much I was suffering. The decompression area is fine, but I was told that I have “spots” on my brain. I need another MRI- my 5th in 3 months- to figure out what is going on, but I am not sure if it is chiari related. The MRI will likely happen tomorrow. Has anyone else had a different brain problem separate from chiari or even caused by chiari? Anyone require a separate surgery to address a syrinx? How about migraines not related to chiari? My providers keep telling me I am having tension headaches or migraines, but all my head pain started in the context of chiari so I am not sure how it is different. How about strategies for pain management? I am in constant head and body pain and am tired of med pushing. I just want to find some genuine relief. Thanks in advance for reading my post.

#2

First, it sounds like you will be chasing down the “spots” on your brain for a bit. Hopefully, that turns out to be benign. Perhaps someone else can speak to that. By all means check out and rule out medical concerns with your doctors. If you are still left with no answers and no relief, there is other information available to you.

Chiari is a complicated issue and affects neurological tissue directly and brain function indirectly. Chiari demands that we and our medical providers open our ears and be willing to hear a different message. Please give new information a chance.

Pain does not always indicate that there is a mechanical problem, it could simply (or not so simply) be that your brain is no longer processing stimuli correctly. Incorrectly processed stimuli is often perceived as pain. Chiari and the stressors that it puts on the brain is very good at twisting the brain into maladaptive processing resulting in weird pain and other neurological-like symptoms that surgeons dismiss as not their fault and neurologists just keep trying medications to fix.

Much research on pain has been under way for the past 15-20 years. Unfortunately it takes a while for understanding, assessment, and treatment to find its way into the health care system. The Neuro-Orthopedic Institute, a physical therapy research group in Australia, are ground breaking in treating pain that makes no sense, gets worse for no reason, and does not go away. Graded-motor imagery is great for the Chiari headache that returns even when the MRI is fine and lots of the wonky body pain. Scar management has its place if the incision is tender at all. Neurodynamic exercises to normalize nerve tissue and motor control exercises to normalize movement and support nervous tissue. Genuine relief, not just band-aids, no drugs. Too good to be true? Well, it was a lot of work, took a long time, and I still did not have great people to support me with the process.

You are new, stay, ask questions, think outside the box. Try not to freak out. Good luck in finding answers.