Hello! My name is Laynee LaTorre, I am 23 years old, and I am here to tell you my entire story as I believe it's important to better understand my situation and need for type II CRPS treatment through The Spero Clinic in Fayetteville, Arkansas. As with most CRPS treatments, insurance does not cover It.Complex Regional Pain Syndrome type II (CRPS) is a non-curable neurological disorder that produces chronic and intense pain . CRPS II arises after an injury or trauma to a peripheral nerve. Peripheral nerves run from your spine and brain to your extremities. It is the most painful condition according to the the McGill Pain Scale. The Spero Clinic is a non-invasive program finding “that the most effective approach to treating the imbalance caused by CRPS is to treat and strengthen the central nervous system from within. This will allow the body to heal itself.”The minimum cost for the clinic is between $35,000-$40,000. Cold laser therapy (which is a separate fee that I don’t have at this moment). Housing is $1700.00 a month (I will be there a minimum of 4 months). I had to rent the apartment for 6 months since I will most likely have to return to Atlanta part way through the program to have surgery. I will then return to finish the program. I will also need an ARP wave machine in and around $20,000. This all happened so fast, that I don’t have all the costs and won’t know exactly how long I will be in the program until I start, but at minimum 12-14 weeks. My mom and I will post updates. https://thesperoclinic.com My Story:Starting at the early age of 2, dance quickly became my entire life. For 14 years I was a competitive dancer until 6 years ago, at the age of 16, I had an unexpected dance injury affecting my left foot. The first year and a half after my accident, I was in excruciating pain, in and out of casts, boots, and splints. With the aid of canes, crutches and wheelchairs, I took every measure to keep myself from applying any weight on my left foot. Resulting in me walking on my tippy toes to overcompensate my pain. I met with multiple foot specialist in Southern California in search of a diagnosis only to leave each appointment being told “We’ve never seen anything like this before” “You’re making it all up” and the most devastating one of all “You will never dance again.” I went misdiagnosed and mistreated that entire year and a half. Having procedures done that were not only unnecessary but leaving me worse than where I started. I was inhumanly awake for procedures that I later learned is protocol for patients to be put under. This became the foundation for my severe medical PTSD. After endless disappointing dead ends, I found the right foot specialist who was able to finally give me a diagnosis. Only catch, he is located in Atlanta Georgia. My diagnosis, an extremely rare nerve entrapment in the bottom of my foot. A minimally invasive surgery to alleviate the pressure on my nerves was scheduled. At this point, my then insurance would not cover any of my treatments and was now faced with paying out of pocket. Just days after that initial surgery, I had noticed my entire foot had turned a dark almost black shade of purple. The pain was unimaginable, my skin ice cold to the touch. Within hours my symptoms had spread throughout my entire left leg to my upper thigh. I immediately informed my surgeon, who told me I was developing CRPS (complex regional pain syndrome) and needed to seek treatment immediately. I had no idea what this treatment was nor how serious of a disease CRPS is. I was diagnosed and received my first of numerous sympathetic nerve blocks within 48 hours of showing symptoms, which is incredibly rare when it comes to this illness. I was lucky and grateful for my surgeons knowledge of CRPS as it is a very rare disease that most doctors have not even heard of. Without this early diagnosis, it would have continued to spread throughout my entire body and organs. CRPS (also known as RSD) is known as the "suicide disease" as well as being the most painful disease known to man. CRPS is a “neuropathic pain disorder.” My body is in a constant state of fight or flight. By trying to preserve my limbs, my body is actually hurting itself. There is a disconnect between my brain and limbs misfiring the pain signals being sent back and fourth causing excruciating pain where there shouldn’t be. The pain feels as though you are being burned alive along with other severe symptoms such as: aching and shooting pain, tingling, pins and needles, numbness, tremors, color and temperature changes, hair and nail growth changes, loss of mobility, memory loss, brain fog, insomnia, sensitivity to noise and light, allodynia, hyperalgesia, POTS (which I was diagnosed with 3 years later), loss of balance, severe swelling, spasticity. Bed sheets, socks, pants, water and touch all feel like hundreds of razor blades attacking the affected area. CRPS flares from pain and can spread anywhere in my body where I may feel pain. A bruise, sprain, piercing or even a paper-cut can cause it to flare and spread. Having surgery is one of the worst things a CRPS patient can do to themselves, especially in the affected area. With this, I know that I must get much worse to get better. Unfortunately, my first surgery wasn't enough resulting in me needing another surgery, but now with CRPS involved. Surgery with CRPS includes multiple prophylactic and post surgical measures: ketamine infusions before, during and after surgery, a popliteal nerve block, an epidural, sympathetic nerve blocks, high doses of vitamin C and pain pumps filtering numbing medication into my foot keeping it numb for up to 2 weeks. I was cut open 10 inches around my entire foot. The 8 hour surgery entailed a full plantar fascia release, denervation, nerve oblation, cementing of my heel bone, stem cell infusions and implanting a nerve stimulator into my foot. Despite our best efforts to treat and avoid a CRPS flare, I was immediately hospitalized afterwards on a morphine and dilaudid drip. Problem is, CRPS does not respond to pain killers. I could not walk for 6 months. In a constant state of being burned alive I was greeted with limited treatment options. CRPS specialized physical therapy, ketamine infusions, sympathetic nerve blocks, heavy doses of lyrica, gabapentin and ketamine nasal spray. I spent the next year in an out of ketamine clinics all over the country. Some 2 weeks at a time for 6 hours a day others leaving my body completely paralyzed in a hospital bed. I lost all sense of reality as I had just spent weeks of my life being fed a constant flow of enough hallucinogenics to comatose a horse. All this trauma to only walk away with relief one time, and it wasn’t even for my foot. It only treated the CRPS that had traveled to my organs. I attended physical therapy twice a week for 2 years, getting over 80 sympathetic nerve block injections into my spine, until my body began to reject every source of treatment. At this point, I am 3 years into my journey and developed severe depression and medical PTSD. To this day I can’t enter a doctors office or operating room without a prescription of valium followed by an uncontrollable PTSD attack. The last option given to me was a spinal cord stimulator. Once again, I was kept awake for the first half of surgery as they looped a wire (lead) through the vertebrae in my lower back. Due to an uncommon amount of scar tissue in my back, the doctor had an extremely hard time puncturing the membrane in my vertebrae. As he pushed through the membrane he tugged at my sciatic nerve causing the most exreusiating pain shooting down my legs. As I laid there awake I let out an involuntary scream so full of agony I couldn’t even register that it was coming from me. As I cried, the doctor yelled at the nurse to sedate me immediately. A 15 minute simple procedure stretched into over an hour of waking me up over and over to try again. Each time resulting in the same result. 3 years later I still have nerve damage to my sciatic nerve. Only allowing my to sit for an hour at a time. I leaked spinal fluid for weeks following the trial yet my CRPS pain had gone down 80%. I had agreed to follow through with the permanent implant just to be told they wouldn’t be able to do it again with the amount of scar tissue in my back. That’s when they offered me a different device to trial. I trialed it and became my doctors greatest success story with 100% CRPS pain relief. 5 spine surgeries (involving multiple complications) later the device was now a permanent addition to my spine. I beat all the odds and found myself in remission. I began to get my life back. I was now 19 turning 20 and had proved my doctors wrong. I had finally danced again. I was able to go back to school and finally live a normal life again. Due to the previous 4 years of trauma to my foot, I did a lot of overcompensation while walking. As a result, my achellies tendon had shrunk causing a severe loss of ankle mobility. I needed surgery to have my achiellies tendon cut and stretched. Due to the limited knowledge on CRPS, trying to receive the proper pre operative necessities is very difficult and often denied. I was promised by my CRPS doctors that the next time they’d see me I’d be all grown up and a mom one day and that the likelihood of me ever coming out of remission were slim to none. Just another broken promise. My foot had turned purple, swelled over my cast, I had developed tremors and the burning sensation was back all within 48 hours. I was just a few months shy of a year long remission. I immediately started ketamine infusions, sympathetic nerve blocks, and was heavily sedated on neurological pain medications. In this medicated haze my mental health took a deep dive as I was preparing to take my own life. New symptoms had arose during this time with my heart. I would have a resting heart rate of up to 180 bpm. My heart would skip beats and flutter, followed with fainting spells. After months of showing symptoms I was finally diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). As months went by I stopped responding to CRPS treatment all together including the spinal cord stimulator. Differentiating CRPS pain and structural pain can sometimes be very difficult especially if both are constantly present; but now I could feel a new pain and it was different. Turns out the 4 inches of my achilles tendon that had been operated on had died. Just a few months ago, my surgeon performed a minimally invasive procedure to try and bring my achilles tendon back to life and treat the entrapped nerves that I still have. The CRPS flare that followed this procedure landed me in a wheelchair. Now this brings us to today. Despite trying to avoid a surgery, it is what I need. I need my achilles tendon repaired, the stimulator in my foot removed and to denervate my sural nerve and re-direct it into my muscle in my affected leg. My surgeon refuses to perform the surgery while my CRPS is in this current state. The Spero Clinic is a world renowned CRPS and POTS specialized center. The program is 12-14 weeks located in Fayetteville Arkansas. None of their treatments are invasive. No more infusions, injections or medications. They have a very high success rate. 85% of patients go into complete remission and stay in remission even after surgery. This program, unfortunately, isn’t covered by insurance (as almost all CRPS treatments are not) because it is seen by insurance companies as “experimental.” This is my last hope at living a pain free and normal life again. The money donated will go towards the treatment program as well as helping pay for my relocation. I start the program September 5th and relocate to Fayetteville August 18th for 4 months. Asking for financial help was the last thing I ever wanted to do. I do currently have insurance, but it does not cover this program. Any donations will help. Please help spread awareness on CRPS and help me get the treatment I need. I continually spread awareness on my social media and have connected with multiple people who are also suffering from CRPS/POTS and have helped them through their journey. I was so alone, scared and confused when I was first diagnosed. I didn’t know where to turn, who to talk to, where to get information etc. If anyone would like to know more about my journey or CRPS, please reach out to me. Thank you so much!
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