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katieclysm, March 19,  2021  8:53am EST

Surprising (and somewhat destabilizing) second opinion

I visited a new neurologist this week for migraine treatment, after 20+ years of tolerating monthly headaches. One of the first things he said upon entering the room was that he didn't believe that I had an infarct when I experienced a cerebral venous sinus thrombosis (CVST) a decade ago. I asked him if he meant that he believed I had not experienced a stroke, and he said yes, because if I had experienced a stroke in the location of diagnosis (basal ganglia), I woudn't be sitting in front of him. This was news to me, as I was diagnosed with a CVST and stroke by the head of the stroke program at a comprehensive stroke center. So I came home to rifle through my old medical records and at least one doctor's note explicitly states that a CVST is a "very rare form of stroke" that "involv[es] the veins deep inside your brain." While my new neurologist's disagreement with the original diagnosis really doesn't matter in the long run (I've recovered fully), I'm still thinking about it. I've spent the past decade at least partially identifying as a stroke survivor, and to suddenly hear that that may not actually be the case has really thrown me for a loop. Has anyone else had experience with this? Is his disagreement with my original doctor just a matter of semantics?

3 Replies
  • AHAModerator
    AHAModerator, March 19,  2021  2:48pm EST

    Hi Katie, 

    Thank you so much for sharing your story with the support network. I am sorry to hear about the conflicting and confusing perspectives you received from each neurologist. I am happy to hear that you are recovered and doing well, but it's still surprising to hear. I hope that as you continue to interact with others here on the support network, you can foster a sense of comfort and solidarity. 

    Best wishes,

    AHA Moderator

  • BobDehner
    BobDehner, March 19,  2021  5:59pm EST

    I highly recommend 2nd and sometimes 3rd opinions for this reason.  Waiting this long since first diagnosed is hard to say, but getting the proper testing and results nowadays there is a better chance of knowing what the true cause was.

  • JimSinclair
    JimSinclair, March 20,  2021  7:03am EST

    We should remember a second opinion is exactly an opinion.

    Medical professionals review the information before them, and based on their specific training and experience provide you with what they think. While medicine is based on science it involves a great deal of interpretation. 18 years ago my neurologists had determined that my massive **-lateral strokes had been enabled by a PFO in my heart. While in a Rehabilitation hospital I was surprisingly visited by a cardiac surgeon who informed that he was recommending that I undergo Open Heart surgery to close the ****. My reaction and that of my family was that I needed a second opinion; and then a third, fourth, and 5th. While the first 4 recommended some form of cardiac intervention the 5th recommended that as long as I remained on my Warfarin there was no need for other action..

    15 years later after visiting a new Family doctor and another parade of cardiologists I was told to just continue with the blood thinners.


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