Chiari Online Support Group

Newly diagnosed and scared

Brief history: migraines since I was 12/13. Recently changed, facial numbness and ice-pick pain above eye and side of face. Pain over jaw.
Three weeks ago I developed disequilibrium, feeling constantly unsteady, even when lying down or sitting. Have been told it’s not sinuses, it’s not an inner ear problem, it’s not viral, basically it “must” just be migraines. MRI showed chiari but apparently that isn’t considered significant as I am not exhibiting many symptoms. So I guess the conversation with my neurologist and GP fell on deaf ears: telling them I had tingling in my hands and arms, weakness in my hands, nausea, neck pain and spasms, a whooshing sound in the back of my neck and a history of joint hypermobility. I’m so scared I’m going to be left like this and nobody believes this is an issue :cry:

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Wow. I’m so sorry you are going through this, :cry: that’s really hard. I can’t even imagine. I pray you find answers soon. Hang in there

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I am so sorry to hear all that your going through but I think you should see a doctor that is specializes in chiari, those things you feel are symptoms. Through this website you will read many people going through similar symptoms. Do seek help don’t give up. I to have been diagnosed with chiari but right now it’s under control.

Hi there PJ!
Your doing well to reach out to others that share your symptoms and frustrating journey.
The medical profession and health insurance carriers often would rather detour someone from a major surgery until that person stays the course long enough.
It took a couple of years to get to the point of having the decompression surgery. Life after surgery still means contending with some of the symptoms. The decompression helps prevent worsening of symptoms, and yes it does give relief.
You will always make your own choices and own the outcome, but I will be happy to let you know how I have managed Chiari Malformation 1. Other spinal issues and genetics can vary what each person with Chiari experiences.
We have Ehlers Danlos in our family, which is a connective tissue disorder that has been known to also be common with those that have Chiari. At age 11 to 12 my health seemed to go down hill. I ached constantly, became weak, and when I exercised I felt so much worse. Of course that is the age when you begin your period and people would make it the cause. In a way it was, but later in life things come together and you realize it involved the Chiari.
I never presented with migraines, but have had 2 headaches in my life that were horrific; one age 5 and the other in my early thirties. My symptoms dealt more with motor and vital functions.
Here is a list of some of my symptoms:
issues with left/right coordination going up and down stairs, episodes of syncope, temporary changes in vision, shut-down episodes, off-balance episodes, penmanship change, heart rhythm irregularity, losing thrust going from sitting to standing, loss of gag reflex, chronic pain and weakness, when walking a distance my body wanted to pull to the right.
Some symptoms we do not like to discuss because it would be difficult for others to understand. When your central nervous system is having issues others find it difficult to perceive.
I am an avid believer in ongoing chiropractic care and massage. I stay away from anything that speeds up my metabolism-caffeine, and over the counter medications. Niacin has caused me issues when in high doses and some supplements contain it, and nutritional remedies as well. I can no longer over exert physically due to the malfunction of my sensory system and I am now taking a capsule once a day of medication used for depression, but for me it is so I can feel the fine definition in my hips, legs, and feet.
After all this you may find it hard to believe, but most people would never know I had any previous or current issues. There is life after the decompression surgery. And yes you may spend some time in intensive care after the surgery, but it is more so precautionary and for your best.
I had my surgery just before I turned 52 and I will soon be 10 years post op!
Know your body well and work with it! That is the key!
Best wishes for you, and your journey!

Hey, PJ! Chiari symptoms can indeed be scary - but there is plenty of hope! My neurosurgeon told me that the chances of 100% recovery from Chiari are best if 1) the younger you are when you have the decompression surgery, and 2) the sooner you have the decompression surgery after the onset of symptoms, the better the chances of full recovery. In spite of all that, I was like “9yearspostop”… I was 52 when I had my decompression surgery, and I went misdiagnosed for ten years once my symptoms started. EVEN SO… After decompression surgery, I recovered 75% function. Most of the agonizing nerve pain is gone. Life is SO much better, and I’ve even been able to become one of the fastest racewalkers/ powerwalkers on the Senior Olympics curcuit (only on my good days, though). The thing with Chiaris is that everyone’s symptoms are different. The Central Nervous System is getting 'the squish," and your CNS is your body’s electrical system. So, symptoms pop up everywhere. Ever so slowly, I think the medical establishment is acknowledging Chiaris - but the Neuro-doctors really should speed it up! Recently I Googled “Locations of Headaches,” and I was quite amazed that “Chiari’s headaches” actually made the list!!! (pain in the back and bottom of the skull) Wow! So - you MUST find a neuro-doc that knows Chiaris, because it IS treatable. But, you have to start with a neuro-doc that’s going to even acknowledge Chiaris.