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. My Miracle Life July 2, 2015 / 3:31 am

    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

    • StrokeFighter July 2, 2015 / 7:46 am

      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. My Miracle Life July 2, 2015 / 5:42 pm

    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. 🙂

    • StrokeFighter July 2, 2015 / 6:37 pm

      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. StrokeFighter July 4, 2015 / 11:13 pm

    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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