A SMART Syndrome New Year

5 Jan

The end of 2016 has been a bit of a roller-coaster.  We started the last quarter on a bit of a high.  Susie was doing better.  She seemed to have more energy with the addition of Hydrocortisone (swimming twice a week) and we had a good check-up in October (scans were stable).  We also traveled to Fairfax, VA to celebrate our niece getting married.  It was great to see family at the beginning of November, and the travel was smooth (Delta’s wheelchair support was terrific with our connections and baggage collection going to/ from Washington-Dulles).

Unfortunately, good health did not follow us to the end of the year.  Susie experienced aphasia again around Thanksgiving.  We had her sodium levels checked, along with possible infections.  We ended up going into the Emergency Department at Brackenridge Hospital on 26-NOV.  They did CT and MRI scans, along with a bunch of other tests.  The MRI showed multiple enhancing areas.  We had quite a few specialists involved in reviewing Susie’s condition.  The short story is it looked like she had multiple areas affected by a stroke or she was having progression of brain cancer or both.

2016-11 Stroke

As Susie’s next appointment with MD Anderson was in the middle of December, we just adjusted her medicines (replaced Hydrocortisone with Dexamethasone and increased Keppra).  At MD Anderson, her MRI looked improved as compared to the NOV scans.  We were also happy to hear that it meant she was not experiencing a recurrence of brain cancer.  What it did mean is she experienced a stroke like event, referred to as a subacute phase region stroke.  We were recommended to do a full stroke work-up with our local doctors in Austin.

So the week before Christmas/ Hanukkah was additional tests and doctor visits, such as Lipid Panels, Hemoglobin A1C, Sodium, Cortisol, CT Angiography, Ultrasound of Carotid and ECG Holter Monitor.  After the tests, it was determined that Susie’s stroke like event was because of damage to the vascular network that had been treated with radiation in 1999 and 2013.  The radiologist and cardiovascular doctor who reviewed the CTA, concluded her condition aligned with SMART Syndrome (Stroke-like Migraine Attacks after Radiation Therapy).

To try and prevent another stroke-like event from happening again and improve blood flow to the affected regions of her brain, Susie has switched blood thinners (was on low dose aspirin/ now on plavix) and have added vascular antispasmodics (specifically magnesium and vinpocetine).  We also learned she now has high cholesterol (when it rains it pours).  With all these changes, I found some interesting information that I wish I had read sometime ago.  I think other brain cancer patients/ caregivers (whether suffering from short-term memory loss or more severe conditions like SMART Syndrome) would benefit from reading them, see:

I find it a bit ironic that Susie is now taking blood thinners/ anti-platelets when she suffered terribly at the beginning of 2014 of thrombocytopenia (low platelets).  Hopefully, we will see a return to baseline later in January and we can restart swimming twice a week.  In the meantime, we get to enjoy our eldest child being home for the rest of this week.

Hope all of our friends and family have a happy and healthy 2017.

Guy Lipof

Accomplished Engineering Executive with deep consulting and sales expertise in healthcare and life sciences, particularly in oncology, driving business strategy, delivering innovative solutions, and improving patient outcomes. Care partner and advocate for raising awareness about and investment towards Brain Cancer Research, such as Glioblastoma Multiforme and IDH mutant gliomas.