Suzanne’s Story

Site created on August 6, 2021

On Thursday July 15th, Suzanne was out for a run and started feeling some numbness and tingling in her feet.  She thought she may have tied her shoes too tight, but as the weekend progressed, so did the symptoms.  By Monday the 19th, the numbness and tingling had spread to her legs, knees, thighs, hips and on into her arms and hands.  The feeling you get when your foot falls asleep and you walk on it (pins and needles) is what it feels like throughout half her body, all the time. 

We spent most of Tuesday in the Emergency Room at Baptist being cared for by multiple doctors, including our dear friend, Mark for whom we are incredibly grateful.  Another person we were in constant contact with and to whom we are deeply indebted is Suzanne’s father, Richard, who just happens to be a retired neurosurgeon.  After a battery of tests, a brain scan and a couple MRI's, a few scary possibilities were ruled out, however the root cause of the issue was still unknown.  We believed it might be a very rare disease called Guillain-Barre, where your body’s immune system attacks your nerves, however her symptoms are sensory in nature, and not motor skills as is generally the case with GB.  The plan at time of discharge was to meet with a neurologist for further evaluation and testing. 

On Monday the 26th, she had another MRI when the apparent cause of her symptoms was discovered but was not yet diagnosable.  The images showed a spot inside her cervical spinal cord at the C3 and C4 levels.  Thanks to Suzanne's father we were able to skip the neurologist step and get an appointment with one of his former partners, neurosurgeon Dr. Kiefer on Wednesday the 28th.  Dr. Kiefer did a neurological exam and determined that additional tests were needed to gather enough data to accurately diagnose and plan for treatment.  On Friday, the 30th a lumbar puncture was performed as well as two additional MRI’s, to determine if any other areas of concern were present in her spinal cord and to definitively rule out the possibility of an autoimmune inflammatory disease like Multiple Sclerosis. 

We met with Dr. Kiefer again on August 6th, and our fears of it being a tumor were confirmed and surgery to remove it is necessary before it causes further damage.  Tumors inside the spinal cord are incredibly rare and surgery to remove them is risky and not something that is done every day.  While the MRI’s showed no other areas of concern and the lumbar puncture confirmed no malignant cells in her cerebrospinal fluid, we will not know if the tumor is benign or malignant until the surgery to remove it is complete. 

On Wednesday, August 11th Suzanne will undergo surgery to remove as much of the tumor as is safely possible.  How much he can successfully remove remains to be seen (we are hoping for a lot!).  What portion/cells they can remove will be tested to determine if it is benign or malignant.  Depending on that diagnosis, further treatment to address what remains of the tumor still left in her spinal cord will be discussed.   

The last few weeks have been an emotional rollercoaster for us but the support and love being shown by our family and friends is truly keeping Suzanne uplifted.  Now that we have a definitive game plan, we will put on the battle armor and prepare to fight. 

Suzanne is resilient, strong, and determined to conquer this and get back to the business of keeping me the luckiest and happiest man alive.  Please keep her in your thoughts and prayers and help us lift her up in this fight…  'Till the battle is won.              


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Newest Update

September 17, 2021

Journal entry by Joe Griffin —

As our family ‘friend’ and favorite musician Michael Franti says, It’s A Good Day For A Good Day! 

Suzanne had another cervical spine MRI and brain scan on Tuesday the 14th. We met with Dr. Kiefer on Wednesday and he confirmed that the spot at her C3/C4 has not grown and in fact appears to be slightly smaller.  Further confirmation that it is not the tumor they initially suspected.  That was really good news.  

Today we met with Dr. Winkly and he concurred with Kiefer’s assessment and also confirmed there are no other lesions elsewhere in her spine or on her brain.  We really loved hearing that. 

Basically, the diagnosis is Transverse Myelitis, CIS (Clinically Isolated Syndrome).  TM is an inflammation of both sides of one section of the spinal cord, caused by the lesion.  Dr. Winkly called it a monophasic event, meaning there’s been just one occurrence of inflammation or demyelination where the immune system attacks the myelin sheath that protects nerve fibers where the lesion was found.  It is possible additional lesions will appear later on down the road, but we hope and pray that they don’t and for now we celebrate the fact that this is the only one we have to deal with. 

The lesion is basically like a scar inside her spinal cord that could take 12-18 months to resolve completely, but it’s very likely she’ll have it for the rest of her life.  Only time will tell.  It also means she will continue to have symptoms if it does not fully resolve.  Thankfully the medication she’s taking for the symptoms is working and it’s safe to take for many, many years.  It’s basically an anti-seizure medicine that patients with epilepsy take, many of them for decades. 

So, we stay the course with the medications to manage the symptoms and as long as they don’t get worse she will not need additional scans for 3-6 months.  As wonderful as these doctors have been to us, the thought of going 3-6 months without having to see them is quite appealing to us, Suzanne especially. 

We are so thankful for today’s news and are incredibly grateful for the prayers, love and support we continue to receive from so many. It truly means the world to Suzanne and to our entire family. Thank you!
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