Really? Read your med records!!

[AnnieDear]

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?

[selmaS]

  Congrats on earning ur Master's !!! Good for u.

So glad u stood ur ground and in a respectful way educated the Dr. and ur DD will get the testing and care she needs.

U r so right Annie....Chiari is life altering...some can go back to a semi normal life and others have to watch closely the activities they get involved in.

I also like the snuggle in bed with ur kids on bad days...there is always a positive other wise we could never notice the negatives.... <3

[AnnieDear]

Just saw this in my inbox. What a trip down memory lane :)

Almost a year out, I can say that my third child's appointment did confirm a 3rd mild scoliosis. So I am, indeed, 3 for 3. My daughter has many symptoms and I finally convinced the ped to refer her to a neurologist after her POTS progressed and she started passing out. The neurologist ordered MRIs, which revealed a possible kinking in the blood vessels. While he said the radiologist did not note any Chiari, I pointed out the slight herniation and reminded him that Chiari is NOT herniation, but a malformation in the skull. He gave me the regular doctor spiel, but I threw facts back at him (respectfully, of course) and found that he is a reasonable doctor. He was willing to acknowledge his short comings and my solid reasoning. So she had two more MRIs of her vessels and arteries; follow up in February. I'll stick with this NL for now because he was kind and understanding and willing to admit when he was wrong or uninformed. He also stated he would brush up on Chiari and related conditions prior to her next appointment (we'll see then).

I am not doing that well right now, but I did manage to finish my Masters Degree in December. We're just trying to let me recover now, since I never really took that time before. I definitely think it was a bad decision to jump back into the real world. Of course, I didn't have all of the information, so I made the best choice I could at the time.

I'll finish by saying that these conditions can be detrimental to our lives. It robs of us good memories. But it's so important to take advantage of days when we can't get out of bed - snuggle with your kids, read them books or have them read to you, talk about the world, explore the internet, watch science and history documentaries. It fluctuates constantly, but there are positives in there, too.

Best wishes to all :)
Annie

[selmaS]

  No worries...do keep us posted and good luck to u and ur little ones <3

((hugs))

[AnnieDear]

Oh, Selma, thank you for this. I didn't even put two and two together... I had a spinal fusion at 15 and had severe pain until the hardware was removed. One of the hooks had actually turned around and was shredding my muscle. I wonder if this had anything to do with EDS? If so, I need to absolutely be careful with my children because so far 2 of them have been diagnosed with scoliosis in the past week. The other child has an appointment next week (and she's the super flexible one...).

Thank you for all you do!
Annie

[selmaS]

  Hi...I know what u r saying and have even posted about this as I requested some of my first MRI's and found that I was dx'd with tethered cord, but the Drs never told me either....

And to get to my point, tethered cord is more the reason for scoliosis, so have ur son checked for that ....see if he has the scaral dimple or hairy patches that can occur.

It is that the spinal cord is attached that causes the spine to curve and shift out of place.

Then find out if he too has EDS...u do not want to put hardware in a person with EDS as we tend to reject foreign matter....

If they release the TC then it is more likely as he continues to grow his spine may straighten out ...a brace may be needed, but much better then implanted hardware...JMHO