The problem I am dealing with seems to be that since the herniation I have is only 4mm the doctors are not considering that my symptoms are caused by the malformation. What can I do to try to get them to see the bigger picture? I have tried to look up any neurologists in my area that specialize in this, but have yet to find one. When I went to the neurologist my primary care doc set me up with, I honestly felt that with the research I have done on my own, I know more about this topic than he did. The other problem I face is that I do not have any medical insurance at this time. I welcome any words of advice that anyone can give me on this. Thanks, and I hope everyone has a blessed day!
Jamie,
This is a wonderful article that helps with herniation size vs symptoms.
I agree with Emmaline,most chiari NSs go on other things when making a diagnosis.Specialist are so different I feel everyone needs to go to a specialist if there’s any possiable way to get there.good luck!
I wanted to give everyone an update here. I went Friday and had my cine MRI. The doctors who were at first just saying my headaches are from migrane headaches are now saying that I have a mild chiari malformation with decreased CSF flow. I guess that since it was only a 4mm herniation it didn't meet the criteria at first for them to say that I do have Chiari. They now want to refer me to a neurosurgeon. Now the problem I have is that I do not have insurance and the doctors here will not see anyone if they are self pay. I have found a chiari clinic that is only a couple of hours a way that has agreed to look at my case and see if they will be able to help me. In the meantime, I am without anything to take for pain and am still pretty miserable. Any suggestions from anyone on how to calm down the headaches so they are not so bad in the meantime? I considered going to an emergency room when they get really bad, but I am not sure what they could do to help me.
Jamie,
I understand where u r coming from. I have only a 4mm one too, but my Ns just retired and with only state medicaid, i had to find another NS who understood chiari. Its really hard. As far as the emergency room, i go when my headaches are really just terrible and they give me a "walsh coctail" and it seems to help. Just a thought. Hope things get better for u.
I know this may not be helpful as it would involve a year of waiting and I know personally that I don't think I could have held out that long. If you can afford health insurance at this time, get on it now. A lot of programs only decline to treat pre-existing conditions for a year. But make 100% sure of this! So after a year's time you can be covered. I know that may not help you now, but it's a thought. And if surgery is in your future you can at least get the ball rolling.
I recently found a NS that is only about two hours away from me. I sent all of my information over to them last week including my scans and reports to let them review them.I should hear something by the end of this week as to if they think they will b able to help me or not. The best part is that they will work with me financially. Keeping my fingers crossed that this will be my answer.