I went for my c spine MRI today and had a follow up with my neurologist afterwards. In a single visit, I’ve completely become lost at what my next step is. Maybe this is normal protocol, but I’m just confused now. I had been putting all hope in this visit that something would be done to help me now, but not so. Here’s what happened.
I was diagnosed a month ago. In the past six months, my symptoms have been horrible. In the past month, my dizziness and such as gotten so much worse. So I was almost excited for this visit, hoping for answers. I get the MRI and go to the dr. He says it came back normal, slight bulging disc around c6 but no issues with my spinal cord. He says he’s now not sure my issues are chiari related. This is after the last visit that he was 100% sure it was the cause and my symptoms matched exactly. Now today, he says headaches are the only chiari symptom and that my dizziness, numbness, vision issues, etc are not symptoms of chiari. I pulled out a page of symptoms from the chiari institute website and had highlighted those that matched mine. Once again, he maintains that those are not chiari symptoms. He also said that my dizziness couldnt be as bad as i say. Ive got plenty of symptoms and issues, why would I exaggerate something? So he says that my herniation size won’t cause symptoms, even the headaches couldn’t be caused by it. I asked him how many mm my herniation was and he says he can’t recall, but it’s small. I’ve looked up pics of chiari on the Internet and mine matches at least a 5-7 mm. Maybe more. I’m not a dr but the smaller herniation pics do not match mine. I’m no dr so I could very well be looking wrong at it, but it’s very evident in my MRI pics. He says we will continue trial and error medications for the next 6-12 months and if it doesn’t help, he will consider referring me to a NS. I don’t wanna seem like I’m vying for surgery but I would like a second opinion. All of the neurologists around go by referral only, as do the NS’s. So is it worth seeking another referral for another opinion or do I just ride it out for the next year? My fear is that if it keeps getting worse, I will be unfunctional. I’m already in lots of pain 5-6 days out of the week. I’m just miserable and wish there was some way to get help from someone knowledgeable.
I am so sorry about this! It was something that happened to me when I saw the neurologist - he wrote that my Chiari was an incidental finding. I was told by others in the know that NL do not have the understanding that NS do relating to CM.
Don't feel like you are vying for anything! You are the one who is living with these horrible symptoms! Take as many opinions and referrals as you need.
Chiari has taken much away from my life, I get frustrated with medical people tellling me. I am living this! I get my GP to print out all the reports from my MRI. I nag him so much & with good cause.
Thanks. I guess I just don’t wanna seem like the crazy lady that can’t take no for an answer. I know there’s a good possibility that I would go to someone else to get the same news, but I really feel like all of my problems are chiari related and he’s just not taking it seriously. My husband has watched me cry myself to sleep from the pain, and not even just the headaches, just the overall feeling of crud and not being able to do what I want. If the next person says no, maybe they are both right. But it was such a relief to get a diagnosis that fit my symptoms and made sense and made me not feel like I was crazy with all of my complaints. Now to be told that those aren’t symptoms? It makes me feel so hopeless in the way of feeling better!
I am so sorry to hear you are going through this. Just because you may not "look" like you're in pain on the outside doesn't mean you're not going through it on the inside. Chiari is different for everyone and each symptom you have described is one I have always been told is a symptom of Chiari. Unfortunately sometimes Chiari symptoms are so generalized that it takes a blockage(which can be shown with a flow study) or something significant to happen. Which is entirely unnecessary for you to go through, that's why you are going to the doctor to begin with right?! If I were you, I would get a second opinion and fast. You can request a flow study which will show if you have a blockage somewhere which would explain your symptoms. Your doctor may not think your herniation or Chiari is worth taking a deeper look right now but another doctor may feel it is the perfect time to stop it before it gets to the point where it may become problematic. If you're having such severe symptoms you need to be your own advocate and get to a different doctor. My mom is going through something quasi similar and I made her email a Neurosurgeon directly. You have to help yourself when it comes to your own health. Only you know how you feel, if your body is telling you something is wrong, you need to listen and make the doctors listen too. I hope you have better luck with the next one. I'm sorry that the one you went to this time made you feel so inferior. My doctor(s) have always been wonderful but I waited 4 months to go see my neurologist and in that time my Chiari actually grew and I had a blockage that occurred which prompted the surgery. I went from a "sit back and watch it" case to an imminent surgery within one visit and that was just waiting 4 months. Please don't wait if you feel something is wrong. Best of luck to you.
Ok, I know I’m going to seem so out of the loop, but I was under the impression, per my NL, that the c spine MRI was looking for blockages in spinal fluid flow? Is the flow study something different? I assumed based on what he said that the spine MRI was the tell-all test for determining blockages. Maybe I’m misunderstanding someone. The NS’s I’ve tried to contact need a referral from an NL. I’m going to keep looking and call my insurance Monday to see if they can help. I have tricare (military insurance) and they are usually really great about helping find drs, but idk if this will be the same thing, since the NS’s need a referral. I’ll also call my GP and see if she can refer me to an NS and by pass the NL. Thanks everyone! My husband is really supportive of me, but I wanted to make sure this wasn’t regular protocol and check about symptoms.
So sorry you are going through this, but keep fighting and dont give up. I know it's hard to beleive right now, but there are good NS's out there who know what they are doing with CM and you will definately be able to tell you're in the right hands when you get the right one. They will treat you so much better than the others and base your case off of your symptoms, not your herniation size. Just keep your chin up and charge on, you will find the right one, but you have to be your own advocate dont leave it up to them, they'll drag there feet. Hope you find some answers soon, and know we are always here for you:) Take Care,