Wild

Recently, I had an appointment with my PCP to discuss the details of my recent angiogram. Although my neurologist stated that everything was normal, I want more details. It is my brain. Unfortunately, no further details have been released so far.

I’m relieved that everything is normal; however, I just don’t understand. My stroke was caused by vasculitis or a narrowing of my brain blood vessels after running in the heat. I was diagnosed with RCVS (reversible cerebral vasoconstriction syndrome).  RCVS has a good clinical outcome in 90% of cases. At 6 months post-stroke, my original rehab stated that I would stop making progress; it is evident that they didn’t research RCVS.

My PCP stated that I improve every time he sees me. He said that my recovery has been “wild”. However, I’ve been working everyday for the past 22 months to recover. I’m still not 100% but I’m working on it. My speech therapist keeps me challenged on my auditory processing issues.

Being on disability, with all this time on my hands, I have many projects I want to commit to. My biggest problem is prioritizing them. Most of them include tasks to beef up my resume for when I do return to the workforce.

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5 thoughts on “Wild

  1. Megan, I’m happy that things are looking up for you as well. Like I’ve written before, we’re rock stars baby!

    I’m writing this with true affection and because I’ve felt a connection since first ‘meeting’ you – Consider another neurologist. At least have another look at your results. I don’t know all the particulars of your case, but the brain will not show ‘normal’ on a test after having a brain injury/infarct. I am in NO WAY saying that we won’t overcome our deficits, weaknesses, and obstacles.

    On the contrary, I think our ultimate goals are the same. We want to become as close to 100% as possible and get ourselves back to gainfully employed members of society.

    I gave up my original neurologist and recently my PCP because they clearly never had my best interests at heart. I’m thrilled with the neurologist and new primary I have now. They’re honest AND encouraging.

    You are absolutely right. It is YOUR brain. You are entitled to know the full results of testing, not just “it’s normal”. This is a conversation that your neurologist needs to have with you, not your PCP.

    End rant. Sorry…I have a tendency to worry about my friends, especially when there’s similar medical history involved. Sending enormous hugs your way! Love ya. Eva

    • Thanks for looking at for me, Eva! I truly appreciate. My stroke was very rare.

      As stated previously, I was diagnosed with RCVS (reversible cerebral vasoconstriction syndrome) back in Oct 2013 by a medical team which included a rhematologist and multiple neurologists. It is a rare syndrome. This syndrome does have the tendency to reverse itself based on the results in an angiogram. But, what does “normal” mean? That’s the question I have. See the results of my angiograms below.

      I’ve had three angiograms since my stroke.

      1. Sep 2013-Two days post-stroke. Angiogram indicated a blood clot. Major narrowing and inflammation of my brain blood vessels. Prescribed heavy steroids.

      2. Oct 2013-Blood clot dissolved. Some improvements were made in the narrowing and inflammation of my brain blood vessels. However, I still had blood flow issues.

      3. June 2015-No narrowing or inflammation. Angiogram showed “normal” blood flow.

      When I had my stroke, I had a team of neurologists. My neurologist treated me when I was in ICU. The only disadvantage is that my neurologist travels to numerous hospitals in the DFW area. My neurologist is encouraging and he’s always believed in me even when I was in ICU. He’s just crazy BUSY. He treats mainly critical-care stroke patients.

      My neurologist talked to me when I was on the table in the angiography suite; no report wasn’t given. He told me was that everything was “normal” and to keep doing what I’m doing. He stated that I didn’t have any blood flow issues. He then talked to my family and told them the same thing. I had a list of questions to ask but my husband couldn’t find it. My neurologist told my family to follow-up with him in a year.

      My PCP wants to see the results. I signed a HIPAA release so my PCP can get the results from my neurologist. My PCP is located just a few miles from my house. Hopefully, I’ll get a full report from the stroke hospital soon.

  2. I’m going to do some research on the type of stroke you suffered. I’m not familiar with it. I understand that your angiogram shows normal blood flow, but what about your brain itself? Are you required to take an EEG or similar? I do, because I suffered seizures after having the bleed, but I don’t know if EEGs are protocol for stroke patients. Get me? It’s how I know that no matter how much I physically, emotionally, mentally, and cognitively improve, my EEG results will never again have a ‘normal’ reading.

    I only know what I learned from my own hemorrhage and my EMS field experience with other stroke patients, so I don’t want to speak about something I don’t know about. I DO know that you deserve more information than you’ve been given.

    If your neuro is good, then keep him. Just pester him a little more for answers. 🙂

    • Eva, I totally agree! I wish I would have gotten more answers from my neurologist. I was partially sedated in the angiogram so I didn’t get to ask all my questions. For my first and second angiogram, studies were written.

      I have no idea what my neurologist means when he says that everything is normal and I have “normal blood flow”. Hopefully, I’ll get the study from my last angiogram soon and have more detailed answers.

      I’ve never had an EEG. I’ve had a few CTs and angiograms. However, I believe angiograms are the main diagnostic tool used for my specific problem. They stick a catheter in your groin which shoots dye in your brain. The dye detects any blockages in blood flow in your brain.

  3. I’m not a doctor; however, here is an article about some people that had RCVS. It mainly affects women.

    http://www.ajnr.org/content/early/2012/03/15/ajnr.A2964.full.pdf

    My stroke was triggered when running in the heat. Removal of triggers is important; physical overexertion, generic medications, no more ibuprofen or birth control.

    Again, I’m not 100%. I’m still in therapy working on my audiological processing issues. However, I continue to get better.

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