Chiari Online Support Group

Hi Everyone, I am Angel

My name is Angel. My 11 yo daughter was diagnosed about 4 months ago with Chiari and a 5mm herniation. Her symptoms have progressed rapidly and are intensifying as well. Honestly now that I know about Chiari, I would say she was starting to show symptoms approximately a year ago, although the pediatrician said it was childhood migraines, she never responded to any of the meds. Now she suffers from daily headaches with a pain level averaging about 5, severe neck and back pain daily, blurred and double vision, ringing in her ears, balance and weakness issues, joint pain, numbness in the hands and most recently in her face. We have seen countless specialists, one of whom actually said in front of her that it was all in her head and I needed to take her to therapy!!! We live in S.C. and are finding that the doctors here are not educated on Chiari. Her pediatrician told us at our last visit if we wanted better healthcare to move to NY! She is beyond frustrated with the doctors at this point, not to mention just being plain miserable most of the time. I joined this group in hopes of finding rays of hope in the dark journey. God bless each of you here! Thank you for sharing your lives with us :heart:

I am so sorry that you and your daughter are in this situation. I do not know all what specialists she has seen, but know that I saw a slew of unhelpful specialists myself. It took a neurosurgeon’s visit and reading the MRI images to get on the path towards surgery. May need to see more than one neurosugeon. Sagittal and horizontal views should be examined. Brush up so you know what that means!

Sounds like you have done all the work up to rule out other medical concerns. It will be interesting to hear what a neurosurgeon has to say.

Thank you for your suggestions. Yes we’ve seen one neurosurgeon and 2 neurologists. We are currently waiting for a referral for a second neurosurgeon. She’s had several MRIs already. Keeping our prayers focused on the right neurosurgeon with the right answers this time.

Oh, my! Angel, I must tell you about little ‘Maria,’ a kindergartener who suffered seizures since birth, and was diagnosed as an epileptic. That is, until she went to the Duke University pediatric center and was correctly diagnosed with Chiaris. Little Maria had her decompression surgery sometime back in 2014, and she is completely normal, now. We live in NC - but on the border to SC. I had Chiari decompression surgery done in Hendersonville, NC, but my neurosurgeon says he refers all pediatric Chiaris to Duke. I don’t know the details of Duke’s neurosurgery beyond that - other than it made Maria completely well. There IS hope - and lots of good Chiari neuro-docs in the Carolinas!!!

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Thank you so much for sharing this information with me! Hope has an appointment with a neurosurgeon at Duke this Monday and a neurologist Tuesday. I’m so thankful to hear that you were able to find help at Duke, that gives me great hope!

@myangelface good luck at appointment. Please let us know how it goes!

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Will be waiting with baited breath to hear how things go for Angel at Duke. To shore up your hopes even more, I was told by my neurosurgeon back in 2012, that a person’s chances of full recovery after Chiari decompression surgery increase when 1) the younger the patient is when the surgery is done, and 2) the sooner the surgery is done after the onset of Chiari symptoms. For me, I struck out on both. I went misdiagnosed for 10 years before correctly diagnosed with Chiaris. By then, permanent damage occurred to my brain stem. Also, I was 52 before having decompression surgery… kinda the ‘end of the age spectrum.’ Still, I recovered 75% - which is WAY better than the 100% agony and paralysis I had been living in prior to surgery. So, I also have high hopes for Angel. Oh! BTW… don’t be too surprised if recovery takes a while. Again - younger people probably heal faster. Even so, my neurosurgeon said that CNS healing is not like muscle/bone healing. He said it was more like a roller-coaster. Extreme ups and downs - with hopefully the ups becoming longer and more numerous. (My ups came in 2-hour increments - until finally I was up to a full day of ‘normal’ - and I didn’t see my first full normal day until 18 months post-surgery.)

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