Ok, so the appointment with the NS didn't go so well. She ordered another MRI and CSF study. She said that all the problems that Kristi is having are not due to Chiari and that we should follow up with her regular doctor. I am so irritated right now. From what I have researched the symptoms are connected to Chiari. What do we do next??
If your NS knows anything about Chiari, the CSF study will tell her a lot. If the flow is blocked that can explain many of her symptoms. Can you get into another NS? I saw 3 NS here in Tx before finally going to Dr Oro in Colorado. One of the NS here wanted to blame all my symptoms on my Vitamin B12 and D defiencies.
Hang in there!
Blessings,
Diana
Angie2459,
I'm so sorry that the visit didn't go well. It's hard enough to watch your child go through this but to not get answers that you so desperately want is tough. I know that where you live - you really aren't directly close to Grand Rapids or Detroit or Ann Arbor. I would tell ya that depending on your insurance you are better off trying for a NS in Ann Arbor or Detroit. Todd, another person from Michigan gave me the name of Dr. Holly Gilmer she is from The Michigan Head and Spine Institute 877-■■■■■■■■. you can always call or go to their website and see if your insurance is accepted there. She did his surgery and he really liked her. She also does Pediatric surgery.
I say get your newest MRI and CSF study and ask for copies of those from the Lab tech and they will usually point you to the right direction. No matter where you decide to go that person will want copies of those to review. The CSF study will tell them a lot. I'm always here if you want to talk.
~Lori D
Thanks Lori! I am going to check into Dr. Gilmer. The bad thing is that Dr. Eden said it could take about 2 weeks just to get the appointment for the MRI and CSF study. Thank you and I will keep you updated.
Lori Dutcher said:
Angie2459,
I'm so sorry that the visit didn't go well. It's hard enough to watch your child go through this but to not get answers that you so desperately want is tough. I know that where you live - you really aren't directly close to Grand Rapids or Detroit or Ann Arbor. I would tell ya that depending on your insurance you are better off trying for a NS in Ann Arbor or Detroit. Todd, another person from Michigan gave me the name of Dr. Holly Gilmer she is from The Michigan Head and Spine Institute 877-784-3667. you can always call or go to their website and see if your insurance is accepted there. She did his surgery and he really liked her. She also does Pediatric surgery.
I say get your newest MRI and CSF study and ask for copies of those from the Lab tech and they will usually point you to the right direction. No matter where you decide to go that person will want copies of those to review. The CSF study will tell them a lot. I'm always here if you want to talk.
~Lori D
How devastating that the visit didn't go well...I am so sorry to hear that.
Maybe those studies will help the NS see that it is her Chiari is causing the problems. You might research and get a second opinion from another area NS.
Best wishes and good luck! Sending prayers and hugs your way!
Took Kristi to her regular doctor today to try and get a letter for school. The school wants to set her up with Home bound services so that she can keep up with school. For some reason these doctors don't want to listen and thinks that her pain and symptoms are for another reason. Her doctor now wants her to go to therapy because she thinks that the problems are not medical related. She thinks that something else is going on and that its causing stress and the stress is causing the pain. Well, I know my daughter and there is nothing going on and there is no reason that she doesn't want to go to school. It is the opposite. She wants to go to school and be with her friends. I am already getting tired of these doctors not listening and trying to blame is on other things. Now Kristi is upset and thinks that she is messed up. I just want to find a good doctor that will listen and figure things out.
I just feel so bad for her - and you. I also have a teenage daughter and middle school is a hard age for them. Add this diagnoses on top of it and then a doctor that doesn't understand enough of the symptoms. It is heartbreaking all the way around. I so wish there was something more that we could do for her. I'm sorry you both have to go through this.
Thanks everyone! I am starting to wonder what is really going on and what I should do next. Is her pain from the Chiari or is it something else. i am so confused and so is Kristi. I wish we could just find a good doctor.