My daughter is going for an appointment on Thursday to Mott Children Hospital to see a Neuro Surgeon and Neuro Opthamoloigist. Neourolgist doesnt see anything on the MRI. She has all the symptoms for Chiari, headache that is intense has not relieved by any meds., numbness in feet, face,ect. ringing in ear, difficulty swallowing, feeling not with it, along with many other. Shes has not been in school for 3 months. Is there any advice that I need to know for our upcoming appointments. I don't feel like anyone is listening. Help.
I am so sorry that your daughter is going through this:( Getting a correct diagnosis is half the battle. I hope you get some answers at her appointment. Do you know if the Neurosurgeon is experienced with Chiari? As far as preparing for the appointment…Make sure to bring copies of her MRI and write down her symptoms and any questions you want to ask. You can find tools to help you prepare for the appointment on our resources page. I hope this helps:) Please let us know how her appointment goes.
Like Crystal said please make sure that the doctor you are seeing has experience with Chiari. Also did you have a MRI of the head and neck or just the head. You can miss the Chiari if you only have a MRI of the head alone. Go to the appt. knowing that you may not get answers and that you may have to get a 2nd opinion. Research the Mott Children's Hospital Neurolgist and Neurosurgeons see if any of them are experienced in Chiari, finding the right doctor is key in the hole process of diagnosis. I hope you recieve answers and feel a sense of hope soon. Hope is such a powerful thing. Keep supporting your daughter and letting her know you believe her. I will be praying for you and your daughter.
Renee
Then shall thy light break forth as the morning and thine health shall spring forth speedily...Isaiah 58:8
Maybe they need to do another MRI. How old is you daughter? My granddaughter was almost 6 when she was sent for an MRI. Being a very nervous hyper child they had to put her to sleep to do the test. If they did not put your child to sleep and maybe she moved around, they possibly missed something. Celina was diagnosed with chiari malformation and was sent to Wake Forest Unisversity Baptist Hospital for surgery . They said in her case the benefits of the surgery out weighed not having it. She could have been paralyzed or she could have died. If you are not comfortable with their diagnosis, follow you motherly instincts. If we hadn't we would not have our sweet Celina right now.
We have a great Resourse page with a link that is titled" Preparing for your appointment". I think it's very important to take another adult and a small tape recorder. They go over so much information so fast....your head will spin & when your emotions kick in you forget half of everything they say. It sounds like you have appointments at a great facility. Please know we are here for you. I pray your daughter starts feeling better. My daughter was home for three years because of a misdiagnosed spine issue. I know how hard that is on our children and on you. We finally got a correct diagnosis , now my daughter is in her second year of college and training for a 10K. Please never loose hope and know we are always here for you & your daughter.
Thanks for response. I am very fortunate to have a good friend who will be coming with me. She has studied this right along with me so she will be a great help. I am so glad your daughter is doing well. I pray we get answer soon so she doesn't suffer for years with this.
My baby had 3 mris also ask about sine or csf flow mri, my daughter was diagnosed after 1st mri decided to do surgwry after csf flow mri and would of been paralyzed if she didnt have surgery. God bless you and your daughter and hope her appt goes well.
