CRPS, Loss of Care, MLT Memories

A memory came up in my Facebook today that both made me smile and recall all the amazing moments I had after the treatments. MLT is Manual Ligament Therapy and was performed by its creator Arik Gohl. I attended a 5 day healing retreat in October of 2016. 8 months after losing access to CRPS and Spinal Cord Stimulation pain management care. I had a second set of treatments in late December of 2016 and into the beginning of 2017. I went to Tennessee for 2 weeks. While there I also learned some of the MLT techniques which gave me knowledge of the unique therapy and its process.

I was treated for CRPS and Spinal issues. Degenerative Disc Disease, Degenerative Joint Disease, Stenosis, Thoracic Outlet Syndrome, Radiculopathy. Neck, arms, legs, feet, and spine. All of me. I felt like it relieved my Levoscoliosis too. Some say scoliosis doesn’t hurt. It does! We never get treatment for comorbidities in regular health care. The focus is always just one at a time, if there’s any focus at all. Often times care is advertised as treating the “whole person”. I’ve never had a physician treat all of me. And with WC, it’s not even allowed. You’re not even allowed to talk about anything other because each carrier isn’t responsible for the other. Okay, fine! Understood! But shouldn’t each physician at least know your history? It causes errors with our full bodies.

I’ve undergone traditional Physical Therapy many times since the injury that caused CRPS type 2. The longest was nearly 9 months straight 3 times a week after the period of non weigh bearing/ and the surgery to place the lis franc screw to attempt to repair the fracture and dislocation of my right foot. Another surgery to remove it. This year was 2001.

The repeat of this is for the new readers to the this blog and I imagine I’ll repeat in future blogs.

MLT isn’t traditional western physical therapy. Often times these therapies are the same for each patient. MLT is specifically tailored for individual injuries, illnesses, syndromes and conditions and targets pain relief for the specific individual. It was a gentle technique that restored blood flow, reduced edema, minimized discoloration and so much more.

I had my first suicidal hospitalization just a week before being dismissed from my PMD of 12 years. I was fired for being in distress. There’s no other explanation. The physicians assistant was annoyed prior to ever seeing me that day and which had nothing to do with me and her bad day until she stepped into the office. For one she was upset that Medtronic was there and that took space in her schedule. Those appointments have always been scheduled the same way and for 10 consecutive years.

She was also highly upset at me for telling her what happened and how I tried to reach out to them to no avail prior to the suicide attempt. My dismissal letter didn’t say I did anything wrong at all. I had always been in excellent standing and compliance with them. My physician gave me a lumbar sympathetic nerve block just 2 weeks before that. Odd right? The letter stated “patient-physician breakdown.” She wasn’t my physician, she was his PA and he was on vacation at that time. He was also in the process of selling his practice which became final soon after.

Who knows why it all rolled that way.

My second suicidal incident was less that 2 months after that. I was already having a horribly hard time with pain. My appointment that day was the block followup appointment and to have my SCS checked by my Medtronic rep. I never even got to the point of being able to get an xray to check if my leads migrated. Only the check of the battery at the time which seemed to be working. My rep as always was kind. Today there should be 3 years left on the battery yet it hasn’t worked at all in approximately 18 months.

My attorney of 19 years has been no help at all. I’ve met this man in person just a handful of times. My son took me to him in 2018. I was still trying to re establish care. It is Worker’s Comp. I had retained lifetime medical on my foot, which included my SCS. They just wont approve me care. Nor will the lawyer appeal the denial for me.

When my son and I were there he once again referred to my injury as a sprain. It seems each time I see or speak with him he refers back to the original ER report. Soft tissue damage, sprain/strain. That is true. On the day of the injury that’s what my diagnosis was. It was incorrect though. A misdiagnosis at the time. It was a major fracture with torn tendons from the bones. Yet he’s adamant to refer to it as a sprain, still. That makes me look like I’m trying to get care for something mild, old and done with. This has never been done with.

It was relieved though by MLT and I believe with all my heart I could have maintained that relief and progress if I could have gotten care.

We had asked him to either help with care or move forward with cashing out my claim. That way I could pay for my own treatments. He hasn’t done that either.

The memory that came up in my Facebook today was a live video. Because of MLT I was able to skate with my grandson, 11 years old at the time, for the first and only time in his life. He held my hand the entire time. I did fall seconds after getting on the floor. My legs and feet were strong enough for the carpet but not to actually skate. Best of memories, no matter.

Also in that year 2017 and into a little 2018, I attended Church in person, attended my nieces baby shower, a Project Ride event, 2 days of California Advocacy Day at the Capital with the California Chronic Care Coalition and the National Patient Advocacy Foundation. I attended NAMI Walks in 2018 though I didn’t walk. I was able to be there for my 103 year old grandma as she lived her last days and with family as we raised money doing car washes to pay for her final expenses.

These are major blessings, even miracles, I would have never gotten, otherwise. It was definitely a remission from what I had been enduring all those years prior. A remission that western medicine could never offer.

That did entirely end in 2018 as well.

Today I’m still receiving some residual blessings from MLT. At least I’m alive. While I did have another suicidal hospitalization days after returning from Tennessee, I’ve not had any since.

Why, some may wonder, would that happen after relief. I had no other support, I sought follow up help, I was getting messages from people on social media thinking I left my volunteer position for other organizations, pressure. I left because I was in bad shape, and trying so very hard not to be. To be clear that’s not the reason it happened but it sure as hell didn’t help the pile on. Mainly, I had no idea how. How I’d be able to go on. How I’d be able to maintain myself with it all. How.

I both have and haven’t.

I didn’t just go through the cold turkey withdrawal from the various medications I had been taking, pain rose considerably. Cymbalta was the worse.

Now a days, I’m just trying to live all over again. New. It’s limited, no relief to wake up, or end my day, nothing in between other than the natural remedies I’ve learned along the way. They each contain benefit but not enough to take a major edge off a flare or even calm nerve pain damage.

Magnesium, Valerian Root, Ashwagandha for depression and anxiety. Kratom, as needed for pain, Matcha for a boost. Oil of Oregano, Vitamin C, Vitamin D, Turmeric/Curcumin, Ginger and Potassium. These are what I use most. There are others dependent on the ailment. I’ll share more about each of these in the coming months.

I’ll continue to tell the above stories as its relevant , but at least I have little emotion over it now. It doesn’t hurt me to tell it.