Daughter recently diagnosed with Chiari 1

[hollyrosemom]

Hi everyone my 13yr old daughter was diagnosed with Chiari 1 8mm descend this week after a year of severe dizziness, fatigue more recently severe neck pain, back pain and arm, face, leg pain, pressure behind her eyes, hearing loss that comes and goes, ringing in the ears. Like everyone i have been doing extensive research because i need to have as much information i can as we move forward to fight this. Its crazy how all the pieces are coming together now, my daughter has been complaining about back pain since she was about 6 of course we did the pediatrician, orthopaedic but nothing came of it now it makes sense. I have a few questions if anyone can answer it would be greatly appreciated.

My daughter gets pain that comes on in the blink of an eye, last night she was laughing and asking to go for ice cream one minute the next she was in my bed crying in pain from her back, she has a hard time describing the pain and i feel so helpless is there anything at these times i could do for her to help ease the pain? What causes this severe pain and why does it come out of nowhere?

My daughter has always been so flexable and what we always called double jointed now i know its called hypermobility, she can bend her fingers all the way back, twist her arm to crazy angles. She also has flat feet and a small palate which is requiring all sorts of orthodontic work. I know this can be some how related to Chiari but looking for some more information.

She has chronic croop which always surprises the Dr.s since this usually goes away when they are little. This year was terrible she got the croup cough at least 7xs lasting 2-3 days at a time. Could the croop be a symptom? Does this cause you to get sick more often?

We have an appointment with a neurosurgeon on June 9th who takes a special interest in Chiari 1. We live in NJ so i was wondering if anyone was close and have any recommendations for Dr.s. There is also a Chiari Center in NY but I have seen they have centers in other states, has anyone ever been to one?

Thank you all for taking the time to read this.

Denise

[lasel22]

Hi Denise, I live in NJ and saw some neurosurgeons who claimed to specialize in chiari but really weren't all that knowledgeable compared to the doctor I ended up with.  Since your daughter might also have EDS she might benefit from seeing a true chiari specialist, which you would find in long island at the chiari institute or the chiari neurosurgical center at NSPC with dr. Bolognese.

[hollyrosemom]

Great thank you for the information.  The Dr. she is seeing tomorrow takes a special interest in Chiari so his profile says.  I will be on the look out to see if he mentions EDS without me bringing it up - from what I have read this is definitely something a true Chiari Dr. would check into.

[selmaS]

  Hi Denise and welcome  to the Chiari forum.

  I went to The Chiari Institute in NY and was well pleased with my Drs and my care...surgery was done for me in May of '09....this weekend is the Zipperversary for me.....

I always had a a croopy cough , and I do believe it is related as I no longer have it....I also have PND which I found is also related as many of us can have Mast Cell Disease....

Hypermobility and EDS are cross overs and need to be looked at closer....I know the Drs at TCI do look at related conditions and rule them out as well as take them into consideration if surgery is considered

I did not get colds or flu's....but being sick or feeling sick was frequent.

The laughing could have triggered your daughters symptoms to flare...most activities can trigger them....by avoiding those we are aware that cause the flares, can help keep some symptoms at bay.