Chiari Malformation Community
I just want my life back
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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I just want my life back

I have read this forum over and over and over. So many of your problems and concerns are mirrored with me.

I guess I should start with my story so to speak.

I've been getting worse over the years, to the point where I don't even know where much of this begins. The usual stuff mostly, fatigue, neck/shoulder pain, headaches, etc. Right before I got pregnant I started to be really forgetful. I've always been clumsy, that has gotten worse. Most of it was blamed on my thyroid, even when it was balanced.

My kid is now three, I can't work because of the pain and the fact that I can't even think straight. This is an ordeal to write. My hands shake, I have tunnel vision, my head hurts, my neck feels 'wobbly', vertigo, nausea and really I'm just so...sad. To the point where I almost cry almost all of the time. I have to hold it together to be the cheerful mom, but my baby is missing out on so much. Trips to the zoo, trips to the park, even walks around the block because I simply can't function.

I saw my PCP a few months ago for the pain. Thyroid was fine, she had xrays ordered and sent me to an orthopedic doctor. He ordered MRIs of my neck, found a small bulge but that was not the problem he said. They had found my reflexes to be consistent with someone with spinal compression and that would explain a lot of the falling down and the numbness in my left arm and my pain. None of the brain fog but whatever. So new MRIs, again, this time of brain and spine, mostly to rule out MS and maybe see something that was missed. Suggested physical therapy and a follow up. My follow up was with the PA and she said nothing was found in my MRI and that I likely have MS. She dismissed me with a note for more physical therapy. I had a fit about being so dismissively told I have MS and saw the doctor, not the PA. He noted that I had Chiari Malformation, that he had assisted with several of these surgeries and it would be just fine. I was referred to a Neurosurgeon that he liked and gave me Tramadol (which I hate, does nothing and makes me unable to sleep).

So, in the days between the referral and the appointment I feel both emotional relief and physical pain. I had bad episodes and a new symptom. My pupils randomly go out of whack. One gets huge and they quit responding to light. It goes away as randomly as it shows up and switches sides. I call my orthopedist every day for a week and a half. No one returns my calls. No one seems concerned. I hate the Tramadol. Anyhow, whatever. I make it to my appointment Monday.

I believe he's a doctor on your list even, which makes me even sadder. Dr. Victor Kareh. I go in and he hardly looks at my MRI. I hope he looked before. But I know he didn't actually measure anything. He notes offhandedly that I do have a herniation but that it's small. Maybe 1 or 2 mm he guesses. He didn't ask about my symptoms, he didn't want to look at the list I had made. In fact, I said less than 10 words to him total. He suggested that it was MS (even though I clearly have no lesions on my MRI) and that my bulging disc was causing the problems (even though I had been to one of the leading orthopedic doctors that said it was clearly NOT the problem).

So I have another offhanded MS diagnosis, a referral to a neurologist in 2 MONTHS for a spinal puncture and I'm miserable. Also heart broken. I'm worried, I've read that a spinal is bad news for anyone who has a Chiari and I don't know if I have one or not. I've not had any tests for fluid blockage or anything other than the original, non contrasted MRIs. I'm lost. I'm confused. And sad.

Well, I should reread but I can't. I need to go get sick and lay down. I just wanted that off my chest actually, I don't know what answers I'm looking for, but it feels better bitching about it.
620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I have to start by saying not all the Drs on our  list r true chiari specialists, they r the drs of the members here, and not every one will like the same Dr, so the list is there for u to use to research drs to find the right one for u.

It may be that this Dr has treated it but does not do research in the chiari field...u were not told to get other testing? A CINE MRI to check CSF flow, MRI's of  the thoracic and lumbar spine?U need to rule out a syrinx in those areas as well as tethered cord, disk issues, sleep apnea, ehlers-danlos , ICP,


If ur Dr is not checking for these issues u may want to research a few others, compare them and go with the one u feel has the most experience and u r the most comfortable with.

U may have Chiari as the length of herniation does not mean u have it or not, and a CINE MRI will help determine how it is affecting u as well as ur symptoms ....

There r  related issues that can also cause the symptoms, like cerviocranial instability, those that have that usually have EDS and that pain is very similar to chiari pain and it is hard to tell which condition the pain is from.

Seek out a diff Dr to help guide u
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