Im sorry this is long but I’m just confused. In 2007 my daughter had her 1st MRI of her head done after getting hit in the head with a Lacrosse stick which showed Chiari1. She has vision issues and headaches for some time but everything seemed to get better. She has always had headaches before this and after but they have been more frequent. Now my daughter has had a nonstop headache since Feb.28 and nothing makes it better. We went to see her Neuro opthamologist which we Aww in 2007 and he ordered an MRI of her head which showed Chiari 1 and she has so many symptoms.She hasn’t been to school in over a month.The Neuro op. suggested we see a Pediatric NS in my town which was rude and not helpfull. He didn’t know if the surgery would help my daughter or not he suggested seeing a Pediatric Nuero. We originally went to the neuro op because no one would give us referral information for a pediatric Nuero not even the Emergency. Her PCP office said to keep a journal of everything that she eats because they find that is why most kids get headaches and wouldn’t refer us. So we made the appt for PediatricNeuro and they can’t see her untily.so back to the Neuro op. He orders an MRI of her spine which showed No Syrinx and suggests we go The Chiari institute in Ny for a 2nd opinion. So I sent paperworkand MRI disc by FedEx yesterday. Since her last appointment with her Neuro op.she has had more symptoms she can’t always feel when she has to go to the bathroom and once she has started her stream she no longer feels it. The headache won’t go away. She feels a lot of pressure in her head and neck.Her spine and back always hurt and more. What do I do now and have I done all that I can. I just want my daughter better as I understand there is No Cure.Buy my daughter once was a very active outgoing and bubbly personality going girl. Now she can’t hear very well,loses conciousness and vision has a lot of confusion and more. She doesn’t really smile anymore either and doesn’t understand why she at 14 needs to wear depends.
Please Help thanks
It sounds like taking her to the Chiari Institute in NY is the best thing for her! I feel terrible that she is suffering so much and at such a young age!
Nysmom,
Reading your daughter's story is heartbreaking. I would most definitely get a second and third opinion. I got three opinions for my daughter before deciding to have surgery. Unfortunately, you will probably have to get mad and crazy at the PCP and Neuro op to get the referrals you need. I would let the Neuro Op know how rude and unhelpful the pediatric NS was.
Since you sent your daughters info to the Chiari Institute in NY, I would call them shortly after you know they have received it and push for a discussion with a NS there. Let them know about the quick progression of symptoms. Incontinence is a serious problem and you need to be sure to stress that to them.
Nysmom,
I feel your heartache in every word you wrote. My daughter became ill at 14 years old and it took us three years to get a diagnosis for a spine condition she has, but along the way they diagnosed her with a condition called reflexive sympathic dystrophy. I was told over time she would loose her arms and legs. I was destroyed. I know you feel that way now. I hear it in your words. Go to the NY Chiari Institute. I know they will give you correct information & treat your daughter. The younger you treat CM the better the prognosis. Please don't loose hope. I wish I could reach through the computer and give you a hug. I totally agree with Cari. Definitely follow up with the NY Chiari Institute. You are your daughters health advocate. You do have to be extremely assertive. She has some major symptoms for a teenager. Please let us know how she is doing. You really do have have people here that understand.
I will be praying for her & your whole family,
Tracy Z.
Thank you all for your kind words and advice.
Nys Mom
As the others had advised do call the Chiari Institute and ask for the soonest appointment they can give you. I had gone their myself and was very pleased how the doctor (Dr. Kula) spent two hours with me explaining Chiari to me. Good Luck!