Chiari Online Support Group

My Daughters Story...Thoughts?

My daughter was diagnosed with her chiari In April of 2015 shortly before her 12th birthday. She had been having intermittent dizzy spells and while her neurological exam was normal they did an MRI just to make sure. It is important to note that my daughter also has congenital Lyme Disease which can cause many neurological symptoms so I was sure we were going to find nothing and would assign the dizzyness as a Lyme thing. We were called within 24 hrs of her first MRI and told she had an ACM1. We were sent to a pediatric neurosurgeon who ordered another MRI of her spine although he didn’t expect to see anything since her chiari was so minor. It was then discovered she had a small syrinx. He recommended decompression surgery. We saw a different pediatric neurosurgeon at a different hospital for a second opinion. He said he considered my daughter asymptomatic and if this were his kid he would not do the surgery but would just monitor it. We went back to our doc and discussed everything and agreed to monitor with MRIs every 6 months, Our daughter was given no restrictions on activity. All of her MRIs have showed no change in anything so with the last one (April 2017) we decided to wait a year. We are about 6 months out from that last MRI and over the past 6 weeks or so my daughter has been having some neurological symptoms. She was getting chills and goosebumps on only the top half of one leg. The last episode covered her whole leg and was followed by quite a bit of pain for the day. She has had a couple of episodes where she gets almost light headed and can’t focus. Then this past week at softball practice she had numbness first in her arms then her legs that lasted a few minutes. A call to the neurosurgeons office has us going in for an MRI in a couple days. I am such a cross roads because these symptoms could be Lyme but there is no definitive way to tell. If this new scan shows nothing new I am not sure if we just continue to monitor her or if we have to assume it could be chiari/syrinx related and per sue surgery. None of her symptoms have a pattern. She could be sitting, laying down, or in the middle of a softball game/practice. The duration and frequency are all different so it is so hard to know. Nothing for sure makes any of these things worse or better. Thank you in advance for you thoughts on our situation.

I wouldnt wait with a syrinx.
Lyme disease doesnt cause a syrinx.
Syrinx can cause irreversible life changing symptoms so maybe better take the steps to improve flow of cerebral spinal fluid unless the child has no symptoms at all.
If she is playing soft ball then sounds like her symptoms are fairly mild for now.
Im not a professional though so i’d suggest seeking further medical opinions from several different experts if possible.
The surgery is terrible but then so is quadraplegia.

Also… in addition
you say its not clear what causes the symptoms.
Ask her if she can look down at her feet for 10 minutes with her head fully flexed forward and see if she gets any symptoms?
Same goes for bending forward and touching the toes.
Hope this helps
X

If there was such thing as congenital lyme, which is theory from Lyme quacks/acytivists and has never been documented simply because Lyme is blood borne and can’t live in “breast milk” and the fetus mother blood supply is seperate. that wouldn’t as tats mentioned have anything to do with a syrinx. The answer is with the neurologists.

TJ

I am late to the game on this post but wondered how your appointment went. My daughter had decompression due to a large syrinx with no symptoms whatsoever of the chiari 1.5 or the syrinx. The syrinx was really wide so her team was concerned. Long story short she has never been well since the first decompression of two and now we are considering fusion… If I could turn the tables back I would have waited for obvious and clear signs of neurological symptoms. I hate to post negative things as I know that it is stressful enough to make decsions but I would have waited for her to be more ill before I would entertain the decompression.