Glimpses of Hope
Written by: Amanda Henderson, February 26, 2020
In the life of a body behaving badly, there can be seasons in which the utmost that can be accomplished is to simply survive. It's often a full time job for chronically ill folks to search for and find things that can contribute to a better quality of life, no matter how small, and then continue in such regimens daily. From a supplement or prescription to an exercise program (if said bodies are capable) can be the difference between dwindling away and getting out of bed each day. Between those seasons come moments of understanding and knowledge that are so profound, they can propel us into the next round of battles.
In early 2016, a group of friends/ church members arranged a benefit to help me get to the next level of medical endeavors- specialists familiar with EDS located on the East Coast. Since doctors in my area are not familiar with my conditions and we were stretched beyond our means to be able to continue the search for a true diagnosis and treatment options, this benefit made it possible for me to continue the journey for better answers and, possibly, higher quality of life. While there currently is no cure for Ehlers-Danlos Syndrome and it's myriad of complex medical conditions, recognizing all aspects of each patients symptoms and engaging in more complete treatments is vital. For me, the benefit provided a moment of counter-pivot in my life that has made a profoundly positive difference, and might help others find better answers as they struggle to find specific directions along their own paths- (p.s, you are not alone, and I send positive vibes out into the atmosphere each day for your own struggles and sufferings.)
That very spring I met my rock star doctor, Clair Francomano in Baltimore Maryland. She guided me towards treatment regimens and diagnoses that are common comorbidities with EDS. I also saw Dr. Fraser Henderson, whom she had recommended, and he diagnosed major physical and neurological issues that pointed me toward more testing.
Since this first springboard into tangible breakthroughs, I've hit milestones and brick walls with equal accuracy and consequences, as tends to happen with such complex illnesses. I'll list them here, and hope to shed light a bit on the waters I've been treading through. (These are ONLY diagnoses from May, 2016 through December, 2019 - here's a list of test and diagnoses prior to 2016)
-Geneticist familiar with EDS, requires treatment of Cromolyn Sodium, famotidine, loratadine, Low-Histamine Diet
-requires treatment of saline IV minimum weekly, as well as added salt and electrolytes to my daily water intake regimen
• Sleep Apnea and RERAs (respiratory effort related arousals)
-Specialist, Sleep studies
• Drop foot and Morton's Neuroma, bilateral
-Podiatrist, X-rays, foot and ankle braces
-Neurosurgeon, Thoracic and Lumbar MRIs, Bauerfeind SI joint, knee, and ankle braces obtained and required for lifetime - replace each 2-3 years, Confirmed need of Rollator for walking any distance, Electric scooter for long distances
-Urologist, Bladder function and capacity tests
• Cranio-cervical instability (moderate degeneration of C-2 thru C-7, possibly C-1)
• Cervical degeneration due to trauma (most likely, trauma due to having EDS)
-Degenerative Spondylosis at C5-6 and C6-7
-Mild degenerative disc disease (T6-7, T7-8, T8-9)
-Left paracentral disc protrusion at L5-S1 with mild compression of the S1 nerve root
-Neurosurgeon, Flexion CT scan of neck, Upright weight-bearing MRI of neck, Full Spine MRIs
-Neurologist, TPa administered, MRI brain, Swallow Study, Holter event monitor, Cardiac Loop recorder, Vascular Carotid Duplex
• Congenitally Hypoplastic P1 segment on the right, the left posterior communicating artery is markedly hypoplastic in my Brain (This means I have segments of arteries in my brain that are smaller than they should be, limiting blood flow- as I age and my faulty collagen makes veins and arteries more 'floppy' - all of this possibly contributed to stroke and continued effects of brain trauma)
-CT head with and without contrast
-Cardiologist, Echocardiogram
• Tethered Cord release surgery (Laminectomy), March 2019, including Peripheral nerve altered cord into the filum (which means I had a rogue nerve attached to the spinal cord, which they cut)
-Neurosurgeon, Dr. Petra Klinge in Rhode Island, Spine MRIs, pre and post-op visits
If you made it through that list, you can see, I've been busy! To see it in black and white can be a bit overwhelming- these diagnoses are very personal to me, and I waiver with feelings of inadequacy. Though I haven't been taking these life-altering diseases and diagnoses lying down, literally or figuratively. I haven't had a
fantastic outcome from the tethered cord release surgery, but that is the chance one takes in having the surgery so late in life. It was worth it, for the hope of recovery from the major weakness in my legs from waist to toe. I've found I'm in the category of living with the effects of Tethered Cord Syndrome for far too long before diagnosis and treatment. Needless to say, I was born this way, and I live in a part of the country unfamiliar with this disease as a comorbidity to a bigger picture (EDS and all of its underlying illnesses). The upside of being stuck in this less-than-functioning body and going through a difficult procedure is that I most likely will not degenerate (legs, bladder, colon) further and as quickly as if I had not had the procedure at all. Tethered Cord is not like having a bad knee you can wait on until it's unbearable to have fixed, and then be redeemed upon replacement. Rather, it's something that requires quick diagnosis by a trained professional as early as possible before you suffer the effects permanently, even after intervention. If found at birth, as it can be with more obvious signs and symptoms, it can be much more life-altering.
Here we are today, in February of 2020. It's been eleven months since Tethered Cord release and more than three years since my stroke, and I continue to grapple with the effects daily. I have short term memory issues and aphasia (trouble finding words) from the stroke. While I have healed as much as I can from the TCR surgery, I find the Cranio-cervical Instability continues to march on, keeping me deeply fatigued, in pain, and weak, especially upon utilizing my body. I have pretty radical Gastro-Intestinal issues, as well. I take saline IV treatments at the hospital weekly, and changed my prescriptions to address the Mast Cell activation issues, which improves some of my symptoms.
Other than that, I spend a lot of time at home to try to keep my body in a state of happy medium (see spoon theory). I've found refuge in several homebound activities- including taking care of my three dogs (possibly a bit spoiled, if not bored with me), cooking vegan foods (the best diet for cholesterol levels-LDL from 123 to 74- with the added benefit of helping to save the planet- yay!), dabbling in graphic design and art (thanks to everyone who thinks of me when they require printed materials!) and watching possibly copious amounts of TV at night (thank goodness for the escape and distraction while using as little brain power as necessary- every day is exhausting!). I also keep up with new developments and research of the illnesses I have, and try to stay on top of the continual whirlwind of changes within this body. I won't give up!
I've found that finding sunshine among the clouds is important, and cherishing glimpses of hope is a life sustaining past-time. I revel in my family and friends who share life anecdotes with me, and I delight in any outing, that keeps me in touch with feelings of normalcy. I encourage anyone who is struggling to find your passions and take part in healthy distractions. It can be the difference between existing and living, and in my experience, the need for living life never dulls despite its challenges. Find what moves you, one moment, one breath at a time.
