I recently had an neck MRI done. I was told I do not have syrinx. But was told I no longer had Chiari I Malformation yet early on my neurosurgeon (who was the one to tell me this news in a phone call today) had said I did have it and I was born with it. He also said I had an herniated disc and a pinched nerve and had asked me if my left hand had been bothering me and I said yes.
I have my images from when they all said I had chiari and it was 7mm. How do you go from that to not having chiari? Why do all my other doctors say yes you have chiari and now he is saying no? Is he a quack? Should I be looking for a second opinion? I still have the horrible headaches and even sharp shooting kinda of pains in that area of my head recently. I just don't know what to think. I had to call to find out the MRI results as it is. I have my images on cd from when they said diagnosis Chiari I Malformation along with the report. I have seen that portion of my brain. Its there.
What do you all think? I am a little upset right now. :(
Edit: I included a couple of screen shots of my images from my MRI cd. I just fail to see how I could no longer have this condition. My best friend seems to think this doctor did not want to deal with me only because I said adamantly that I did not want surgery at this time and wanted to just wait and see. Oh and the neurosurgeon basically said he was discharging me as a patient even though he had found the herniated disc and pinched nerve. He said surgery was an option to fix the problem, but then so were anti inflammatory drugs and physical therapy. He did not offer for me to come in for an appt either so we could go over my MRI images together. My best friend thinks I should report him to the medical board or whatever it is. Sigh.
Hi. If I was you I’d have a second opinion. Chiari is a hard thing to live with and you have similar symptoms las I do. It took years for me to find out why I was having these pains and numbness and tingling in my left arm also a shocking sensation down my arm. If you do have chiari being treated is something I’m sure we both want so we can live normal lives. Good luck and don’t give up on figuring out what’s wrong.
I plan to look for a second opinion. I just find it odd that he is going to dismiss my original diagnosis after agreeing to it. I even have that in my medical visit summary from when I initially met him for the first time. And now he is saying no? The neuroscience center here is a joke though. My best friend goes there for her MS and they are very rude and condescending people. They discriminate against women, people who are overweight, etc. They don't listen and act like self entitled snobs. If he did not want to take me on as a patient, I would of been cool with him being upfront and honest. But I have a problem with him toying around with my health. I want to know exactly what is going on so I can be proactive in taking care of myself, you know? I included a couple of my MRI images in my original post if you want to see them. But its there clear as day. This is why I am so upset with this doctor.
Can you explain to me what to look for on the skull? Are you talking about how it goes down in to my spinal area? I am still learning about Chiari, I know what to look for based on pictures from chiari sites like conquer chiari. Thanks! :)
Rebecca said:
I don't think it's possible to just not have chiari one day. Chiari malformation is the shape of the skull, not the herniation. But, I see it on the image. Time to move on to another doc.
I would ask for an appointment to see him as you need his advice clarifying, perhaps take someone with you? Then ask him in a confused girly voice how he appears to be contradicting himself show him your original report and your scan and ask him to explain .Then get another opinion good luck . br/>
Jennabug said:
Can you explain to me what to look for on the skull? Are you talking about how it goes down in to my spinal area? I am still learning about Chiari, I know what to look for based on pictures from chiari sites like conquer chiari. Thanks!
Rebecca said:
I don’t think it’s possible to just not have chiari one day. Chiari malformation is the shape of the skull, not the herniation. But, I see it on the image. Time to move on to another doc.
Jennabug, huh? Clearly something changed, but for the NS. You’re MRIs don’t lie. This may be a blessing in disguise. What a disappointment though…I’m sorry. Just a thought, maybe the NS didn’t look at the mri and just read the report, does the report acknowledge the herniation? Either way I think the trust is gone with guy.
He said he was discharging as a patient and did not need to see me :/ He never offered me an appt to go over these MRI results and why he now says I don't have Chiari. I wish he could explain why I still have the headaches, the spots before my eyes and the dizziness and the ringing in the ears. I honestly think he formed the opinion that he had no reason to see me when I was adamant about not having surgery at this point. I wanted to wait and see. Oh I think he is totally contradicting himself and I am thoroughly disgusted he would treat any patient like this. You want to tell me my MRI results over the phone and not have an appt to go over them? Obviously this is why appts are needed.
debbymcc60 said:
I would ask for an appointment to see him as you need his advice clarifying, perhaps take someone with you? Then ask him in a confused girly voice how he appears to be contradicting himself show him your original report and your scan and ask him to explain .Then get another opinion good luck . br/>
Jennabug said:
Can you explain to me what to look for on the skull? Are you talking about how it goes down in to my spinal area? I am still learning about Chiari, I know what to look for based on pictures from chiari sites like conquer chiari. Thanks! :)
Rebecca said:
I don't think it's possible to just not have chiari one day. Chiari malformation is the shape of the skull, not the herniation. But, I see it on the image. Time to move on to another doc.
In my original report from when I had my blackout and got sent for the MRI back in Aug 2014 it definitely mentions their findings to be Chiari I Malformation. But this new MRI done on my neck (to which this NS did not really want to do in the first place but I told him I had been doing my homework and I wanted to know if there was anything related to chiari going on with my spine) I do not have the report or images because his center (the center for neurosciences) wants to charge $20 for me to even have access to my own medical records. And he does NOT want to see me as a patient and told me on the phone after he said I did not have chiari, but I do have a herniated disc and the pinched nerve (he did not specify where) that he was discharging me. He never offered to have me make one last appointment with him to go over these new MRI findings or even do a comparison to my first MRI leading to the diagnosis (I did not have the original MRI at his office.) I think the man is a horrible doctor. One who has no compassion for the patients. If he did, he would know that seeing the proof would make all the difference. I for one do not find it funny to have your whole world flipped upside down when you learn you have something like chiari and it was what led up to you blacking out, or the reason why you have headaches on a constant basis. The ringing in my ears drives me bananas. The dizziness sucks as well. And the spots I see before my eyes all the time are just as annoying. This doctor did not care about the headaches either. My neurologist was the only doc other then the NS who understood how awful I was feeling and actually prescribed meds to help with the headaches. The NS saw me ONCE in all his life back in November. And agreed with the findings from the original report and MRI finding. It even says it in my medical records from that one time visit with this NS. All my other doctors were in agreement with the original report and MRI. So how does this change? And how can he just blow off his patient, no appt or no report or images unless I wanna pay $20, which I do not have. I am on disability. So yeah its not like I can afford to pay for my own medical records. I honestly feel really upset with this man's lack of empathy. jcdemar said:
Jennabug, huh? Clearly something changed, but for the NS. You're MRIs don't lie. This may be a blessing in disguise. What a disappointment though...I'm sorry. Just a thought, maybe the NS didn't look at the mri and just read the report, does the report acknowledge the herniation? Either way I think the trust is gone with guy.
They won't. They want $20. I called my insurance today to see if they could even do that or even charge that much. And insurance said they could. So unless I come up with $20, I could only hope the NS sent over both the report and images to my docs, both primary doc and neurologist. But somehow I get the feeling he is only going to send the report. I am sure they could request the images but I think this guy is just going to make it difficult because he can. If I have to go back to a NS, I will not go back to that center again. There has to be other NS outside the center of neurosciences. lol
Rebecca said:
I believe most places are required to give you one personal copy of y our MRI for free. Can you go to the office that actually did your MRI and request the disk?
