My 12 year old daughter has been diagnosed with mild Chiari. The MRI clearly shows the brain extending further than it should. The CSF flow was normal and the nerve conduction test was normal. She has severe symptoms which affect her daily life( fatigue,headaches,stomach pain, nausea, dizziness,difficulty concentrating, blurred vision,burning skin). A neurosurgeon wants to operate to do a decompression. Can her symptoms be due to Chiari, even if the CFS flow is normal?
Welcome...I am so sorry ur daughter is going thru this.....and I know how frustrating it can be.
CSF flow is most important with a chiari malformation.However, U did not mention if she was checked for a syrinx or tethered cord....it is important to know all that may be affected her.Tethered cord can cause many of the same symptoms, in fact it can cause the chiari to form.....so if it is taken care of first u may not need to do the decompression. A chiari specialist is where u really should go to determine all of ur options.
I would deff check her complete spine and see a specialist b4 I would consider the surgery....after the full checkup then weigh all the options.
Dr Oro is in CO and Dr Bolognesse is in NYC and Dr Frim In Chicago......these r some of the top chiari specialists.
Please post ne other questions...we r here for support.
I pray ur daughter finds the right dr and feels better soon.
U r welcome.
Do u know is the NS a chiari specialist?
Had I not insisted on more MRI's I would not know that I also have scoliosis and tethered cord in addition to my chiari , DDD and stinosis.
I know of 2 other people that have chiari and TC and both had TC surgery first.One, from my area of PA had a rather large herniation and it has since retracted after the TC surgery....7mm to 2 mm........and the need for decompression has been eliminated for now.Unless the herniation grows to cause a CSF blockage.
First, a CINE MRI is not a 100% accurate assessment of CSF flow. It is a snap shot at that moment in time. If she was lying down, it *could* be different when she is standing.
So, I would not base a decision whether to have surgery on a CINE MRI nor a brain MRI. I would look at the whole picture.
If your daughter is having symptoms that keep her from living her life, then it is time to consider the treatment options.
My daughter had surgery in October of 2007. Her symptoms were very similar to your daughters. She was 13, and to the point that she could not shower by herself, dress by herself, or function on a daily basis. She had to have surgery...there was no other option for her.
Second, your daughter, however, may have other options. There may be medicines that could help her right now. If she does not have a syrinx, then surgery might could be postponed for a while if she is functioning well enough.
My best advice to you is to do lots of research. Read all that you can, and educate yourself so that you can be the best advocate for your daughter.
If you have any questions, please feel free to ask.
My daughter is 13 and she has alot of the same problems as your daughter. Her herniation is 1 CM. Her surgeon is in no rush to preform the surgery. he wants to make sure that if it is done she will have some kind of relief.
My daughter had a series of tests done called vestibular testing. It consisted of a P.T. evaluation, gait testing and lots of different things done with computers to track eye movements to see if there is a a change in different positons and situations. EX. moving chair. her ears were also tested to make sure the dizziness is not coming from that. There was nothing invasive in this test.
Her doctor is a Chiari specialist and he told us that usually not always but usually something comes back abnormal in these tests if the dizziness is coming from the Chiari. Her tests came back within normal range. She will see another neuro now to get an eeg done and to see what he has to say before we go back to the surgeon to discuss surgery.
There are different things to get done before you make the decision about surgery. These were just a few. It is a very difficult decision to make. Why put children through this if it will not provide relief in the long run.
I know my daughter usually misses one day a week from school from her dizziness.
She also has the fatigue and sick stomach. She has tremors she feels inside as well. All her symptoms are Chiari symptoms but yet there are other things I was told by the surgeon that caould cause this also. There are migraines that do not cause pain but can make you dizzy, that is what we are going to this new doctor to investigate. Her appoitment is next Friday. It took us a little while to get in to see him. He is supposed to be an excellent neuro. This is the guy our surgeon would like to us to see. He has alot of confidence in his opinion.
Take care and keep us posted as to what is going on with your daughter.
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