Chiari Online Support Group

Negative help from the neurologist

So, I’m in the early stages of my Chiari malformation diagnosis. During my last appointment with my Neurologist, I basically told him that I had concerns about the Chiari diagnosis, mainly because it was brand new and he wasnt going to mention it. I had to bring it up and that was only because I went and got a copy of the report, then immediately started doing research before my appointment. I am a firm believer in being your own advocate. Well, during my appointment, he told me that he wasnt convinced that Chiari causes headaches, especially when it is “only 6mm” and is “barely significant”. But he told me that he’d appease me by doing a flow study, but he was more concerned with my sinuses having a possible sinus infection. Well, I called about a week after the both the flow study and a follow up CT of my sinuses to get a follow up appointment and his extremely rude receptionist kept telling me that they didnt have the reports. So, being my own advocate, I told her that I’d get copies and bring them to her if they were having trouble. That afternoon, I was literally in the hallway of the radiology clinic getting the reports when the receptionist called me and goes “yeah, the Dr reviewed your reports. We dont need to see you, but he thinks you should see an ENT. That is, if your insurance will pay for it.” I was like “wait, I dont need a follow up appointment?” and she goes “No. He doesnt want to see you again. Have a great day.” AND HUNG UP! I immediately opened the reports that I had in my hand and the flow study noted restricted CSF flow!! I couldnt believe it! All because I was pushing for treatment because I have been feeling like crap and in pain and I know that there is something wrong with me and wont stand ideally by playing “dr knows best”. I did my research, I advocated for myself, and pushed for my care in a timely manner, and he was like “Nope, not going to be treating you.”

I’m sorry that you had that experience Cassi. At least you have the reports in your hand now, which will make it easier to get another opinion.

What is your plan for a next step?

Sharon from ModSupport

Hi Cassie

This totally sucks I have had similar rude experiences with a neurologist telling me That my headaches are probably just from migraines even after being diagnosed With chiari and scheduled for decompression surgery by my neurosurgeon! (Face palm)

Lesson I learnt is that neurologist Don’t really know much on the subject of chiari and think they can solve chiari with medication. The best people I have spoken to about chiari and csf blockage have been the neurosurgeons. If you don’t mind me asking did they scan your entire spine? surgeons tend to sit up and pay attention when there’s a syrinx involved in which can happen if csf flow in restricted for too long. Mainly because the syrinx can cause permanent nerve damage. Unfortunately it shouldn’t take this to get a medical professional to help you out.

I think what your doing is right. I would even suggest researching into chiari specific Neurologist. Or one that has felt with a a lot chiari patients. Hope you find some to help you out.

Yeah, Abbielee, You didn’t need THAT doc! He wasn’t worth it. I found my Chiari doc by Googling “Chiari surgeons,” and fortunately, the closest one was only a 90 minute drive away - and all he did was Chiari decompression surgery. When your doc told you that you ‘only’ had a 6mm plug, immidiately my red flags went up. My neurosurgeon told me right off that the length of the hernia makes no difference in the severity of Chiari symptoms. A plug is a plug. In fact, he told me that in his career of Chiari patients, he had one patient with an inch-long plug whose only symptoms were little tingles in the fingertips. Meanwhile, another patient had a 1/2 mm plug, and she had to be rolled into his office in a wheelchair - she had become totally paralyzed. Mine was 'only 1mm." Not only that, but my cerebellum’s brain ooze wasn’t even coming out from the back - it was coming out the SIDES of my skull. Therefore, when I was required to get a 2nd opinion, the 2nd neurosurgeon in Charlotte wasn’t able to find any Chiari - because he didn’t even know to look for lateral brain ooze - only medial. I am forever grateful that Google landed me on the best Chiari neurosurgeon ever. (He’s retired himself, but has trained many others how to do decompressio surgery.) Keep being proactive and find the right CHAIRI qualified one!

Hi, I’m so sorry you went through that. It can be difficult to find the right help and you are doing great by researching and advocating for yourself. It can be discouraging, but keep it up! No one will fight as hard for you and no one knows you better than you do. If you haven’t done this yet, you can ask for a second opinion, or, like many others in this group, google Chiari specialists and find one you are comfortable with. Best of luck! I hope you find the care you need! Don’t give up!

I have had the same experience with doctors it almost feels like either they are afraid you will know if they make a mistake or it hurts their ego because you have put the work in to try to understand what is happening to you. I personally think ego with neurosurgeons I left my first appointment in tears I have never been so dismissed and unheard in my life. I hope you find a better doctor soon.

This is just awful… so sorry you had this happen to you. Keep advocating for yourself no matter what. I admire you for not backing down and not being intimidated. You are the real expert here! I have seen plenty in my lifetime too. All the best to you and I pray you feel better soon!