arrival

If you read nothing else, PLEASE pray for our appointment with neurosurgeon Dr. Fraser Henderson on September 16^th at noon ET further investigating whether I have a tethered spinal cord or not and if so, if it may require surgery.

Family, friends, faithful followers and prayer warriors-tomorrow is THE day, the appointment we have waited over two & a half years for is HERE! The list of the incredibly frustrating, long and difficult road we’ve traveled to reach this point goes beyond anything we could’ve ever imagined. Going through the dozens of pages of new patient paper work detailing every medication we’ve tried, alternate treatments we’ve pursued, hospitals we’ve visited, specialists we’ve seen in different states simply for the possibility of a tethered spinal cord alone-it all brought emotions to the surface: the trauma, the pain, the hell, the horrible experiences, the anxiety in waiting.

Honestly, it seems impossible to believe-countless doctor appointments and conversations with specialists around the country, hours upon hours spent on the phone with medical offices and research, sleepless nights spent researching, countless future medical and lifestyle decisions riding on the outcome of what the answer to one question is, an absurd amount of time and finances spent on diagnostic testing, debates with and between a wide spectrum of medical professionals, a seemingly never ending amount of scans and other diagnostic testing measures, a sharp increase in pain, new symptoms emerging…tomorrow is the day people!!

After countless referrals to find which doctor we think would be best suited for evaluating the case of whether I have a tethered spinal cord or not and a back and forth between doctors being “team cervical” vs “team lumbar”. Dr. Fraser Henderson is the doctor we decided on pursuing for his advice on whether I have a tethered spinal cord or not. I rest assured in the trust that Dr. Francamano, who I deeply trust, respect and admire recommended him and that he has worked extensively with Dr. Francamano and the EDS Foundation, which I think is key in knowing that if someone is going to make the determination on whether to operate on my spinal cord or not, it is someone who has been exposed to the complexity of EDS. We have been forewarned that he spent decades in the military so as a military doctor, he has different bedside manner and approach than we may be used to and he only accepts out of pocket pay-so every second with him is even more precious than normal; with that in mind, we are coming in as fully prepared with scans, detailed paperwork and notes from other doctors as possible.

The four simple outcomes I see happening (although who am I kidding there always seem to be surprise outcomes that none of us seem coming) are: Dr. Henderson thinks my spinal cord is tethered and wants to operate, Dr. Henderson doesn’t think my spinal cord is tethered and doesn’t want to operate (However, one of the major concerns with tethered spinal cords is sometimes you don’t know whether it’s occurring in a patient or not until you “get in there” during surgery), Dr. Henderson is still undecided and more testing is needed or we still don’t know. Depending on the outcome of the appointment, I’ll fill ya’ll in on what all a tethered spinal cord is, what surgery would entail, alternative treatment methods, etc once I know more-as for now I am trying not to overwhelm each of you and also not freak out my own brain.

One of my biggest fears through out all of my medical journey and with this appointment in particular, is that will we hit a dead end. I am continued to keep searching and pursuing answers, but I don’t ever want to be at a point where we are told “we have done everything we can do and there is nothing else we can do and even though you are 22 this is what your life will be like for the rest of your life”. So my prayer for our appointment revolves around having a next option-whether that be surgery on my tethered spinal cord, surgery on my tarlov cysts, pursuing more testing or other specialists, deciding to implement a pain pump…something. I need hope that regardless there is a next step and I have something to maintain faith in. I have no idea how or where my emotions (or my parents and even possibly siblings) will be for the next week, other than all over the place, because I know Dr. Henderson’s words will carry great power and will influence countless health and lifestyle decisions in the years to come. As much as I try to emotionally and mentally prepare myself, I know the best thing I can do is grant myself grace and ask for prayer: an appointment with Dr. Henderson that exceeds all expectations we have-a doctor and staff that use their time wisely, analyze my case, have exceptional knowledge, are filled with compassion and grace and understanding and empathy, challenge the norm to find the best possible decision making for all facets of my health and find the best way for me to lead my best life. For my Dad & I who are attending the appointment: I ask for prayers that we are on our “A game”, for me to have a “good day” so I can be as insightful as possible to aid the doctor in his decision making, peace for my mom who will be at work unable to attend the appointment, patience with the doctor and his office, an open heart that trusts the doctor and his years of expertise and above all, a heart that remembers that Jesus is in control and He knows what is best-always. God is good, all the time. All the time, God is good.

“Do not be afraid, for I am with you. Hear Me saying peace, be still to your restless heart. No matter what happens, I will never leave you or forsake you…Even though you don’t know what will happen tomorrow, you can be absolutely sure of your ultimate destination. I will hold you by your right hand, and afterward I will take you into glory.” -Jesus Calling