Hello, everyone! I was diagnosed with Chiari 1 in mid-2011 following an auto accident and severe headaches, pain, numbness/tingling/pins & needles, balance issues, blurred vision, and weakness on left side. I had decompression surgery in March 2012. Previously, I was diagnosed with scoliosis at age 14. My curve almost doubled in 4 months, so I had a spinal fusion at 15. My curve progressed a little immediately after surgery and a hook turned, shredding my muscles for 3 years. Finally had the doctor take me seriously at 17 and had hardware removal at 18. Right before my spinal fusion, my knee dislocated while I was playing with my young nephew. I had an MRI of my knee. The ortho I saw for that said I would probably need knee surgery. I don't remember much else.
Fast forward to now... I have read so much on here about checking for other conditions. I was born with sacral dimples (didn't know what they were until my decompression, nor did any doctor ever mention them). I also have a crooked tongue - also, no one ever said anything. I saw my primary care physician two weeks ago for a regular check up. He said it looked like my scoliosis was progressing a little and wanted me to see an orthopedic specialist to check on it since I hadn't had it looked at since the follow up from my hardware removal (in 2000). I scrambled like mad trying to pull all of my medical records together and I ran across records from when I was a teenager that I ordered last year and never got to reading. Turns out, a lot went on in my physician's minds that my mom and I were not let in on. My knee is all messed up, but they didn't address it because my fusion was scheduled for 2 weeks from that date. The doctor also noted that several tests swere positive and he believed I had a possible variant of Ehlers-Danlos. Hmm. Funny because I had never heard of that until this board... The NS that did my decomp didn't take it seriously and it took me a TON of convincing and pleading to get him to even check for tethered cord. So now, I feel like it all makes sense - the rapidly progressing scoliosis, the Ehlers-Danlos, and the tethered cord.
Now, I'm nervous. I do regular visual exams of my three children's skeletal structure because I don't want them to go through what I've been through. A few weeks ago, I noticed that they all had slight curves. I strongly feel that, at the least, my youngest child (6) has my conditions. He has headaches, a crooked tongue, and often has extremities fall asleep (haha, it's tickling mommy!). My NS urged me to get him checked out, but his pediatrician has adamantly denied for the past year plus. So when I saw the curve in his spine and the differences in his rib cages, I called and made an appointment with the other pediatrician in their office. She examined him and said he was fine. I told her I respected her opinion but disagreed and pointed out why. She was shocked but admitted I was right. Then, she discovered that his leg lengths are unequal. So now I have to have the leg lengths examined first, then he can see the scoliosis specialist. But really, I want an MRI to look at his brain!
And yesterday, my eldest had her physical. I again told the doctor (same one as last week) that I believed she had a slight curve. The ped told me that so far I have a good track record so she'll check more closely (she called my observation of my son a one-in-a-million catch that most doctors would not have seen). And whaddya know? My daughter also has a slight curvature. Next week, my middle child goes for her check up. So now I'm two for two and terrified I'll be three for three. My children have absolute faith in me, so they're not nervous at all. But knowing what I do now about my own history, I don't have any idea where to begin with my kids. And trying to take care of everything they need while I feel like I do... it's tough :(
So any suggestions are welcome. And so are good thoughts!
Annie
P.S. The ortho I saw today said I was wayyy too complex for anyone around here. He said I most likely have a neuromuscular scoliosis, which he's never even seen, and that the syrinx or tethered cord is causing my scoliosis to progress at this stage. He recommend I go back to my NS because the other issues I have sound like neuro issues. Yay?