Disappointing First NS Appointment

General
1

I finally had my first appointment today and I'm not sure how to feel about it. I spent some time with the doctor's Medical Assistant going over general health information, but nothing specific to my symptoms. I gave her my 2 MRI disks and she uploaded them for the Neurosurgeon's Radiologist to look at. About 15 minutes later the doctor and his PA came in and he asked me what my main symptom is and I told him debilitating headaches and described them for him. He asked 2 follow-up questions on my headaches and said "You do not have Chiari. Your MRI shows no herniation and cannot be the cause of your headaches. You do have a lot of symptoms and I suggest you figure out what's going on. You're too young to have so many problems."

I wanted him to clarify so I asked if he saw any herniation of any size and he stated that there is no herniation.

I asked him if he could suggest the next step to take or what other tests might be ordered to help figure out what could be causing my headaches and other symptoms and he said no, I don't need any other tests. His suggestion was to go back to seeing a Neurologist in my area and get a mix of cocktails to help with my migraines since I told him that I have not had much relief with past migraine medications.

He could sense my hesitation and simply stated "If you look for answers long enough then you'll find the answer you want. If you think you have Chiari symptoms from reading the internet then you'll think you have Chiari. You do not have Chiari and do not let anybody tell you that surgery is necessary. Again, you go to enough doctors, you'll find a doctor that will operate on you. I make my living doing this, if you needed surgery, I'd be the first to schedule it, but you do not have Chiari and you will never need surgery."

I asked him about possible CSF flow issues which may be causing headaches and he looked in my eyes and said if pressure was an issue then he would be able to accurately detect that by looking in my eyes. He said the only other diagnostic tool is a lumbar puncture, but that no NS would ever order that unless the "eye exam" showed pressure issues.

The physical exam consisted of standing in one place while I touched my nose and he touched both sides of my body and face to see if the sensation was different on either side. He asked if when I took a shower if the water felt different on one side when the water hit. The entire appointment with the doctor took less than 10 minutes. He was not rude at all, just very direct and matter of fact about what he thought.

I know a lot of people have had similar experiences about doctors being dismissive, but the only reason I may give his opinion credence is because my first MRI from several years ago showed a 6-7mm herniation and a diagnosis of Chiari where my second MRI from 2 months ago showed only a 2-3mm herniation and was "not indicative of Chiari rather only a mild Tonsillar Ectopia".

And in that case, if the herniation is only 2mm I know that's a very slight herniation, not to say it can't cause symptoms, but it is small. Then again, did the herniation really decrease that much? I have been waiting to get an answer about the decrease in herniation and if that's possible, but he couldn't answer that since he said there was NO herniation.

I do have an appointment with another NS next month, but this guy came well-recommended and is noted as a top NS in the area. The other doctor I'm seeing was just to get a second opinion, but is not necessarily highly regarded in the field.

I am not necessarily feeling discouraged because he didn't think my symptoms are related to Chiari, I'm just disappointed that response came from the NS that I was kind of banking on to lead me one way or the other with my issues. Of course, I don't want and hope I don't have Chiari even though I feel like I've been living with it for 5 years now because of my symptoms, but even if it wasn't Chiari, I don't understand why he would turn me away with no further suggestions, test, etc.

I also found it odd about his surgery comment since I never once mentioned surgery and I had a million other questions or things to discuss before surgery would have ever came up.

Is this typical of a first appointment or consultation? Do most NS go off of MRIs mostly and not symptoms? Clearly mine wasn't thorough because he felt I had no business being there since I don't have Chiari, but I would have expected a differing kind of exam regardless.

I know I've read hundreds accounts of people having a similar experience so I shouldn't be surprised. I will get another opinion, but I also don't want to "push" for a diagnosis of Chiari either.

Just feeling disappointed and confused right now.

2

Surgeons do surgery, I'm not sure what else you want him to do but I wouldn't trust him to do it. He doesn not have the training to medically manage much of anything.

Positioning is everything for a good MRI as is finding the neutral position. That would be the reason for the difference in the three MRIs. I liked the guy you went to. He's right you will be able to find a surgeon to operate But here's the key to yopur appointment. The thing about the eye and the lumbar puncture is dead on.

The Cine MRI talked about a lot here means little because of the positioning. It takes on meaning ONLY when comparing pre and post operative studies. Cines used to make surgical solutions are highly suspect. They help the doc to confirm what his physical exam, other tests, and symptoms indicate.

Make sure "highly regarded" doesn't mean just does a lot of surgery. Chiari surgery is actually pretty simple in terms of neuro surgery.The technique is essentialy the same as entrance and exit is for every surgery except they don''t patch the hole. many of the highly regarded Chiari surgeons are great mechanics, but the reputation is based on the fact they also have great bedside manner and are selling hope by surgery that other equally competenet if not superior mechanics wouldn't do.

Incidentally. "I really don't want surgery" is a phrase that has a lot of meanings to docs. Some surgeons will actually say what they are thinking "What the H are you doing here then?" The less scrupulous take that as what it most often means "please tell me I need surgery" the best will ignore it.

Good luck with your second opinion. I hope it guides you to where you need to be.

3

Someone can be a good neurosurgeon and have no experience with chiari... i had an mri and was told nothing was wrong with me and she gave me antidepressants which caused side effects and grand mal seizures. I took the same mri to a diff neurosurgeon and he diagnosed me with chiari.neurosurgeons usually dont deal with medications, they do surgery and send u to neurologist for meds. Sometimes the protocol and getting a dr to listen are the hardest part. Dont be passive aggressive about wanting answers. Stay strong!

4

Thanks, Allure. I don't think I'm being passive aggressive, but I do want answers and I feel I deserve answers. I've been to a handful of NS and unfortunately have gotten almost as many differing opinions. (Though I have now chosen one for treatment that I really like). It's just so difficult because at some point we have to rely on the experts to guide us in a direction, but so many NS address Chiari from different perspectives. Some NS give credence to symptoms, some give credence to size of herniation, some always perform a durplasty, some almost never open the dura and the list goes on. I'm not criticizing any of them, but because there is no "standard" way to diagnose or treat Chiari it makes it very difficult for a patient (who has been suffering for a long time) to sort out all the different opinions and recommendations they have been given by the experts.

My one problem with the NS I described above was that he stated I have no herniation when I went to his office with several MRIs and radiology reports that all stated I do have a herniation. Yes, there was a discrepancy on the size of the herniation, but to say I had NO herniation when all the other NS I went to also confirmed a herniation was crazy to me. Deciding whether or not that size of herniation qualifies for surgery or even indicates a Chiari Malformation is one thing, but to DENY that I have one I just don't understand. That was my problem with him and I think that is a legitimate concern.

5

Finding a doctor that you like and more importantly that believes you is hard! Especially when you have MRI showing you have some herniation. Don't give up searching for the answers and relief that you need. If you believe he did wrong, didn't take you serious than im sure you could file a report somewhere about him. Good luck on you next appointment, its hard dealing with a lot of symptoms and not getting any help with them. Stay Strong!