Chiari 1

[mamas3]

I have a 12 year old daughter with mild 6mm Chiari 1. She is complaining about severe burning sensations (back, arms and legs) and fatigue can this be due to the Chiari or not? Any information would be greatly appreciated.

[mamas3]

Hi thank-you for your response. I am still searching for a specialist for my daughter. the neurologist told me not to worry the symptoms that my daughter has are not related to Chiari. She also said that she doesn't even think she needs an MRI of the spine. However, after reading everyones response I don't trust her and will be requesting one.

Thank-you all.

[mamas3]

Sorry I used the initial NS my daughter has not seen a neuro surgeon only a neurologist.
Thanks again

[mamas3]

Thank-you  Selma I will certainly request another MRI of the spine. My daughter doesn't even want to get up most days. This is just so frustrating. I found a Chiari specialist in this area,  but he has a long waitlist. Also what  are drop attacks? I have been wondering if anyone knows if Chiari is related to meningiitis. My daughter stopped breathing at 7 days old and was diagnosed with meningitis. I was wondering if maybe the spinal tap or maybe the disease itself could have caused Chiari. I asked the Neurologist but she said No.  I am so glad that I found you guys. Thank-you again so very much.

[mamas3]

Thank-you the NS told me that 6mm is so mild that my daughters symptoms could not be causing these symptoms. I am still searching for a specialist in my area but the wait is so long to be seen. I hope your son is better soon.  I will also request another MRI. Thank-you

[pamk5]

Hello!  I am sorry that your daughter is going thru this.  I agree with Selma.... too many labels like mild, insignificant, borderline to minimize this disease are used.  Most of the time you will hear this from a doc who is not a Chiari specialist.  I would absolutely recommend that you take her and her scans to a NS who specializes in this disease.  There are test that need to be done to rule out associated conditions.  

I cant add much more to what Selma has said.  I hope you find relief for her.  Best of luck to you both.  

Pam

[jacmurphy]

You should probably still request a sleep study.
My son's stats (oxygen levels and heart rate) are normal during the studies. I have never noticed him stop breathing. He also doesn't snore very often.  But his CO2 levels are high. This can cause excessive sleepiness during the day. Not one day has gone by in the last 11 months that he didn't need a 3 hour 'nap during the day and he never wakes up feeling refreshed.
No matter what the age.. having a diagnoses doesn't make the doctors listen or understand.
Things seem to be moving for my son now. But it's taken me being the mother from hell to make them move.

[KiaSister1]

My main symptom that I have had for as long as I can remember is Chronic fatigue.  I have never had a sleep study done because years ago when I suggested that to the doctor (before I knew about Chiari) he said that I needed to see if I stopped breathing at night. My hubby never noticed that, so they never did it.  Every site I have been on that lists Chiari symptoms show fatigue as a symptom.  I have also had chronic neck pain and dizziness all of which I thought was unrelated.  I am a month after having the decompression surgery.  The fatigue is still there, but I am still recovering and that is part of recovery.  I have noticed that the last week or so, I have experienced very little dizziness.  I am confident that the fatigue is due to the Chiari, since we tested for a zillion other things.  I am anxious for it to go away, but know that will take a while.

I am a bit envious of people who learn of the diagnosis at an early age.  I spent a lot of time feeling like I was crazy because I could not figure out why I felt how I did.  I was just diagnosed in December and it answered a lot of questions for me.

[selmaS]

  Hi and welcome to the chiari forum.

  Yes, as Jackie mentioned it is very possible the symptoms r from chiari or  a chiari related condition.
What I do object to is the term mild...if a non chiari dr said this is ur DD's Dx...please drop the term...as it decreases the way the dx is perceived......to say mild makes it sound less invasive....and chiari has a way of hitting hard even when drs tag it with terms like mild...sorry had to get that off my chest....too many drs look at the size of the herniation and not the way it is impacting the patient b4 considering their description of it.

Please find a true chiari specialist...and get more testing to see what is going on...Like Jackie mentioned if she may also have a syrinx....or tethered cord, sleep apnea, Ehlers-Danlos, DDD and a few other issues...it is important that u find out and know if she has a CSF blockage and overcrowding.

  If she develops new symptoms especially breathing issues, or drop attacks or issues that may be affecting her overall health call the Dr asap or take her to the ER.

We r happy to have u join us, but not happy for the reasons that bring u.

  "selma"

  

[jacmurphy]

Hi. Welcome to the forum. Sorry for the reason that brings you here.
My 14 year old son also has 6mm Chiari 1. And he also gets that burning sensation, mostly in his back and arms. He says it's like having sunburn without it feeling hot. He also has chronic fatigue. We had our 2nd sleep study last nite. (High Co2 levels)  They are sending us to another hospital for a 3rd sleep study (The Multiple Sleep Latency Test) Our hospital is not set up to carry out that test.
I have requested a new MRI to check for a Syrnix.

Jackie.