It seems to be my doctors’ new favorite buzz-word – “That’s not covered by Medicare or Medicaid” – and it’s really limiting my treatment options for CRPS/RSD.
You see, I have so many other medical conditions, especially gastrointestinal, and I’m also very sensitive to many medications, experiencing some of the oddest adverse drug events which are not in the side effects list. This means that conventional pharmacological interventions are often not a good first choice for treatment in my situation, and this is the main reason I’ve had to treat my GI diseases with drastic lifestyle and diet modification. Any drugs, such as narcotics, which slow GI motility will increase my SIBO (Small Intestine Bacterial Overgrowth) which is caused by my functional motility disorder, effectively making me more miserable than I am feeling currently and increasing malabsorption, resulting in nutritional deficiency.
Surgical procedures for the treatment of CRPS (amputation or sympathectomy) are contraindicated as they can cause the disease to spread and therefore these are not covered by Medicare/Medicaid, which is probably a good thing given the failure of these treatments to lead to positive patient outcomes. Nerve ablations and spinal nerve blocks are covered, for which I am grateful. Yet, if you’ve followed along on my blog, you may remember that I’m not real excited about the idea of frying my sympathetic nerves through RF ablations either; it just seems counter-intuitive. I desire to take the less aggressive and less risky route of trying the lydocaine spinal nerve block first before considering the use of RF ablation – a sensible and responsible approach.
Believe it or not, I desire, despite my pain, to try a less drastic route of treatment and to mitigate the risks of more invasive therapies if at all possible and rationally expedient. Most level-headed individuals with 2 cents of common sense (and who are not living with the desperation of chronic pain) would agree with this approach, as would most doctors who aren’t being manipulated by Big Pharma, donuts, free dinners, and pretty pens and dollar store trinkets (it’s ok – I love the dollar store too…so I understand how easy it was for them to manipulate you).
In my opinion, nearly any treatment that is not in pill or surgery form these days tends to get labeled “alternative medicine/therapy” and the likelihood of treatments in this (very huge) category, though they may be much safer long-term than either pharmaceuticals or surgical procedures, being covered by an entity such as Medicare and/or Medicaid is significantly reduced.
In line with this point of view on medical care, I chose to begin Biofeedback therapy, as suggested by Dr. F, to gain control of my sympathetic response and hopefully increase circulation in my leg to decrease pain and hypoxia within the tissues. Knowing that it would take a number of weeks to months for me to likely see positive results, I also chose to hit this monster with a lumbar nerve block as suggested by Dr. Z in an attempt to achieve more immediate relief. Other than the Lyrica which was covered by Medicare Part D (for Drugs?), and the compounded cream (which has a mixture of ketamine, baclofen, cyclobenzaprine, gabapentin, and lidocaine) for which I am paying out of pocket $60 a month because this also is NOT covered by Medicare D, I have not yet added any new medications.
Today was my first biofeedback appointment. Well, really it was an evaluation to see if I was a good candidate for biofeedback (and as it’s worked well for controlling my pelvic floor dyssynergia and I was already using DBT and coping skills strategies, I suspected I was). The appointment consisted mainly of a pshychological evaluation to which I am no stranger. The doctor, Dr. C.E., and his staff were incredibly professional and caring; it was a refreshing experience from that perspective.
Dr. C.E. said, “My assistant and I have discussed your case and I believe you would be helped significantly by biofeedback therapy. But there’s a hitch.” Oh no, here comes the favorite phrase. “Biofeedback isn’t covered by Medicare. We contacted several different providers, but it’s not an option.” I let out a verbalized sigh.
Doctors and therapists who have incomes MUCH higher than my own see no problem with telling me that I should commit to paying out of pocket for this therapy, this medication, and this procedure which are not covered. Many are infamous for referring me on for one of the above before checking to see if it is in fact covered. I spend hours tracking down some hope for pain relief only to fall flat on my face with a higher stack of extinguished hopes after being told (several appointments, new doctors, and tanks of gas later) that no, this wonder-treatment isn’t available to me even though it would be helpful. Catch my drift? For a person desperate for relief of chronic pain, this repeated experience is like riding an emotional roller coaster. I felt like this was going to be another one of those hard let-downs.
Luckily for me, God had a plan I could not see and He made a way. Check this out!
Dr. C.E. continued, “Even though this biofeedback isn’t covered, I’m willing to help by writing very detailed instructions to your psychologist telling them how to lead you through the process of retraining your sympathetic nervous system. I can write up instructions for each week of therapy and stay in close contact with your therapist. You won’t have access to all the equipment we have here but you can use the thermometer which is a good gauge of overall arousal. I think this is a very good second option – it’s not optimal, but it’s not bad.” I told him I was very interested and that I’d like to try this approach with my current psychologist at UNC who specializes in working with patients who have chronic pain and gastrointestinal disorders and that I like working with her very much.
He said, “I was hoping you would say that! Your therapist is Dr. OE, right?” “Yes,” I said. “Good! She did her internship here with me, she was one of my students, so I know her well and she’s a fine therapist. She would know this protocol very well and be helpful to you. I will contact her today and we’ll get your evaluation and report out to her by Friday.”
I was extremely impressed by Dr. C.E.’s desire to help me rather than drop me outside his doorstep with a “Sorry, there’s nothing we can do for you here, but better luck next time” approach as so many other doctors have. The fact that he’s willing to put forth the effort to write detailed instructions and stay in close contact with a therapist from another practice is taking it beyond the call of duty in this day and age of over-paperworked medical staff and tight patient scheduling back-to-back. His commitment to helping me this way gave me the sense that he wasn’t in this job for the paycheck, but truly to fulfill the Hippocratic Oath he swore. He’s got my vote of approval and he set my mind at ease as he explained that our second option is a good way to work around an antiquated health insurance system that manages only disease, not health.
As I left and began processing through what had happened, I felt amazed. What are the chances that I would meet this specific doctor for this specific therapy (there are I believe about 4 or 5 other doctors at his facility who also do biofeedback) who was also the clinical instructor for my therapist with whom I am well-established? For that matter, what are the changes I’d meet a doctor ON THE FIRST TRY who is intrinsically motivated to help patients heal regardless of compensation? That’s a real rarity these days! As I started to realize all the stars that had to align for this to happen today as it did, I felt truly grateful.
It was an excellent reminder that God is in control of my healthcare, ultimately, and not Medicare or Medicaid. The Bible says that God owns the cattle on a thousand hills. I’m not sure how many cows that is but uhm, the point is that God made it all and owns it all, and he needs nothing from us. Who are we that we can give to God? We only give to Him what belongs to Him in the first place, that which He’s allowing us to borrow/use. Therefore He can also provide for me from what is already His. I had one of those moments where I just took a breather and said, “Oh, yeah, I forgot…the world doesn’t revolve around ME!” 🙂 Those moments are good – very good – however they come.
Though one day I may pour my energy into trying to change this behemoth of a system called Medicare and Medicaid, advocating for others who are in the same trenches, right now I need to focus on getting on the track to healing myself and staying there for a while. Darwin said “survival of the feistiest,” right? It was something like that, anyways.
If you’re in the thick of it with Medicare/Medicaid and cannot seem to get the services you need, pray to God for His provision. I don’t do it enough myself, but we’d all be a bit better off if we did. He owns the cattle on a thousand hills, the medical equipment in a million doctor’s offices, the warm water therapy pools in 5,000 membership-only gyms, and all the rest.
“God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me
He will be my guide
Hold me closely to His side
With love and strength
For each new day
He will make a way
He will make a way” – Don Moen