Neurosurgical Stem Cell Treatment for CCI

Hello everyone - many of you guys know me. You know I have always been active, fit, loved healthy lifestyles, and have a love for medicine. However, many of you don't know that I have spent the last 4 years fighting for my life after some life-altering medical changes took place in my body.

Up until now I have kept most of these details private except for people very close to me. I am not the person to ever ask for financial help, however, so I will be listing my story here in a lot of detail to demonstrate that I have done everything within my power to recover medically. This is a long read but if anyone is going to contribute financially, I want them to know exactly what it is going for.

——————————————— 1. The Beginning

In 2018 I was diagnosed with a C. difficile bowel infection after joining my family on a Caribbean cruise. Originally misdiagnosed due to a failure in testing, the infection went untreated until it finally landed me in the hospital with severe symptoms and GI bleeding that eventually led to an Ulcerative Colitis diagnosis. Up until this point I was a perfectly fit and healthy 24-year-old with a full outlook on the future and this is where my journey from complete health to eventually being housebound began.

The C. diff was successfully treated but over the next 4-6 months I began suffering symptoms of fatigue, temperature dysregulation, exercise intolerance, and other signs of nervous system dysfunction. Come March 2019, I was hospitalized again with another GI bleed resulting from a prescribing error on the part of my physician.

During this time I was still working hard at school to finish my prerequisites for medical school, working as a pharmacy technician part-time, studying for the MCAT, shadowing physicians for clinical hours, and continuing to participate in photoshoots for part-time work as well. Things finally came to a halt in September 2019 when my body had had enough and I crashed.

A full list of symptoms I experienced over the next 3 years would be too long to list but included the following and many others -

And a myriad of other things signaling multi-organ nervous system dysfunction were among the symptoms I experienced. The brain fog was so severe that at times doing even basic math problems was unthinkable - coming from someone with straight A’s in upper-level science courses this brought me to the point of thinking I may never be the same again. My diet for about 18 months was limited to only 8 different foods I could tolerate.

Most of this time, I was enveloped in complete despair, feeling like things would never be normal again and that my dream of practicing medicine was gone. However, I began seeking medical help everywhere I could with the tenacious goal of getting my old life back whatever it took. Between September 2019 and today I have seen physicians all over the country and began working through many non-traditional diagnoses after mainstream physicians were unable to provide any answers or find any significant abnormalities in my labs.

——————————————— 2. The Journey

During the 3 years between March 2019 and today I found my way into the realm of functional medicine and, slowly, began finding providers that were trained to find many of the non-mainstream problems that most doctors are not well versed in. This led to a variety of new diagnoses ranging from mild to significant.

After my 2nd hospitalization with a GI bleed in 2019, I proceeded to perform approximately 6-8 FMT procedures with two very carefully selected donors - if you don’t know what this is I’ll let you look it up. This resulted in a significant normalization of gastrointestinal bacteria via stool testing and elimination of UC symptoms even with discontinuation of medications.

I spent time with several doctors in 2020 without much real progress in function. In the spring of 2020, two years ago, I was finally forced to quit all forms of physical exercise due to the week-long nervous system crashes that even 30min of moderate exercise would begin to cause. For those of you that know me, you can guess how devastating this was to me. I still have not regained the ability to exercise and have lost about 60-70lbs over this period.

During this time I was still somehow able to both apply and be accepted into medical school which was a dream come true.

Last year in 2021, however, I found several exceptional physicians that I have continued to work with and we finally uncovered a multitude of abnormalities that traditional testing did not show. These included:

This led me to sell my home in 2021 to pay for medical expenses.

In addition to the above treatments, I have periodically received months worth of IV nutrients on and off to replace things my body was either temporarily impaired to produce on its own or that it was not properly absorbing.

——————————————— 3. Correct Diagnosis

Still, while improvement was seen with these various treatments, we still had not found the root cause of the most severe symptoms. This led, finally, to some specialty diagnostic imaging in February 2022 at a highly specialized neck center due to chronic cervical neck pain that I had been experiencing as part of my array of symptoms for the past 2 years. It was here that we finally found the long sought after culprit that linked all of my symptoms together definitively - craniocervical instability, otherwise called CCI.

CCI is a condition where the ligaments (strong-as-steel connective tissue that connect bones together to hold them in their proper places) in the neck become damaged due to a number of possible reasons such as lifelong poor posture, physical trauma, infection, or chemical trauma. When these ligaments are damaged, the joints around the cervical vertebrae become unstable and begin to move more than they are supposed to. This causes things like compression of the vagus nerve, improper blood flow to and from the brain from compression of veins/arteries, and brainstem compression. This, in turn, causes the sympathetic nervous system (fight or flight) to turn on and stay on while reducing the ability of the parasympathetic nervous system (rest, digest, and heal) to calm and heal the body.

Me and my doctors believe that the genetic mutation altering copper function put me at risk for impaired healing of tendons and ligaments. During the C. diff infection, an enzyme that breaks down connective tissue (MMP9) can be elevated significantly and set the stage for this condition.

The neck center imaging revealed a number of markers that were highly abnormal and clearly indicated severe ligament damage such as:

Soon after the imaging, I was fitted for cervical weights to help correct the curve in my neck while also being slotted for a surgical procedure.

The only two treatment options for this condition is spinal fusion (a surgery that costs about $50,000, is not covered by insurance, and has very poor outcomes in most cases) and treatment with PRP (platelet rich plasma) and bone marrow stem cells. The procedure can best be described as minimally invasive neurosurgery because the interventional surgeon is using ultrasound and x-ray guidance to navigate needles around the patient’s spinal cord and vertebral arteries. There are only some 20-30 doctors in the nation who will perform this procedure as it is very difficult and requires a significant level of skill and training.

I was quickly slotted for a high dose PRP and stem cell procedure that was performed on March 17th of this year and consisted of drawing bone marrow for the stem cells and large volumes of blood for the PRP and doing a series of injections into the joints and ligaments all the way from the top of the head to the bottom of the neck - all without anesthesia. Talk about a fun time! I am very grateful for the level of care that I received, however even if it is a difficult procedure.

——————————————— 4. Healing

I am now about 7 weeks post-op and the results from the procedure have been impressive and have resulted in a larger gain of function than I have had at any point in the last 4 years. I will even be starting back to work soon! Unfortunately, very few patients require only one procedure in order to correct the damage completely and mine was severe enough to warrant two procedures.

SO, this is where the go-fund me comes in. I am not someone who ever thought I would be asking friends or strangers for financial support but here I am.

My family has contributed what they can to help me and I have personally spent approximately $120k dollars out of my own pocket in the last 3 years - mostly coming from the sale of my home - as most of the physicians I needed to see do not accept insurance and have been forced to pay out of pocket almost the entire time. After approximately 546 doctor appointments in the last 3 years, never ceasing to stop seeking answers, I can confidently say that I have done everything within my power to allow my body to heal as best as it can.

The goal is to have my second procedure done this summer around the middle of June so that I am still able to rejoin medical school and continue the program. However, if I am unable to get treatment and start school on August 1st then I will lose my shot forever.

Ultimately my goal is to continue on this path to full health, complete medical school, and then give back to people who have had similar experiences to me and care for the ones that most doctors don’t know how to care for.

God has been gracious to provide for my needs throughout the turbulent ups and downs of the past 4 years and I am grateful to all of my friends and family that have been there for me during this time. Any support is appreciated more than can be communicated. Thank you very much for taking the time to read :)

Andrew Holztrager