Amazing that it has taken over ten years to be diagnosed with Complex regional pain syndrome. I’ve been to see physicians, neurologists, hand surgeons, acupuncturists, pain therapists, and a long list of them at that. Most have told me that my pain sounds like it sucks and that they don’t know what to do about it or who to refer me to to get treatment. For anyone claiming that our medical system in the United States was good before the ACA… I have news for you – it isn’t. It Fucking Sucks!
Some of you may remember my posts from a few years ago when Dr. Jerry Huang performed surgery on my arm to try and alleviate the ongoing pain. Reading through those posts now make me so angry and frustrated. I was so hopeful at the time that the surgery would resolve a lot of issues and bring me closer to 100% functionality. Alas I ended up far from the outcome I was looking for. If I have 100% of me to bring everyday… 40-50% of “me” is spent dealing with pain on an average day. 50% margins are really crappy when most people have 80-100% margin to bring to their day – everyday. I thought I’d get up to my Run Your Age goal, I thought I wouldn’t be in pain everyday. I was a little embarrassed and frustrated that it didn’t come to fruition and didn’t post anything here about it as a result.
I ended up trying the Washington Center for Pain Management to see what they had to offer, turns out it was some good and some bad. We tried Gralise, Gabapentin, Lyrica, Lidocaine, and the now much regretted Stellate Ganglion Block. All have their downsides and some worked a little better than the others. The trouble was that on the drug end of the spectrum Praveen K. Mambalam over at the center only knew about or wanted to prescribe the newest drugs. This meant that the arsenal of potential drugs to try wasn’t available to me and only the most risky and most expensive solutions were available. I’m sure Dr. Mambalam was getting paid with no problems as a result of my visits (I know I paid them a few thousand dollars over the year and a half I was seeing them). What really did it for me though was my first appointment in 2014 when they didn’t show up. The office was closed, I called and got a voicemail, no one ever called me back to apologize or discuss why the appointment was missed. Clearly they were not putting the patient first.
Let’s recap a little… Here we have an issue that I personally have been having for 2/3rds of my life, have spent thousands and thousands of dollars to fix (if you count medicine, insurance payouts, and out of pocket expenses we’re nearing $100k investment), and am still scratching the surface of real possible solutions.
It is interesting that no great solution has been developed for this situation. As a patient I can’t really diagnose my own problem, I’ve had numerous diagnosis from multiple doctors (none of which turned out to be accurate). I even had one doc tell me we could try breaking my arm and seeing if it would heal better. So who do you go see to get help? Websites are difficult because they try to put words and requirements that I need to know to search for – remember my description of the pain may not perfectly match whomever wrote the website.
If we think about it though this is the same problem that many entrepreneurs who are on the edge of innovation are dealing with. Their customers don’t exactly know how to describe what they need, in fact when you take a bunch of their potential customers and put them in a room to ask about the problem they need help with the answer isn’t exactly the same. So what is a great entrepreneur to do? Should they use their hammer and call the problem the customers/patients are describing a nail (as was the case with Dr. Huang)? Should they hustle and sell their customers one of the three or four most profitable solutions they know of (as was the case with Dr. Mambalam)? Or should they bring their understanding of the industry, the customer, and the solutions that are possible to the table to truly innovate and bring value to their customer?
I can’t really say that I have found the entrepreneur-doctor to solve all of my problems, but I did happen to try a third Neurologist last week who seems to have a better understanding of the problem space, the treatments, and was willing to act as a drug caddy for a while to try and help me. One thing I know is that now being on Oxtellar for a little over a week now, my pain is lower (then again it was on all the other nerve drugs for the first few days). I also know that I can’t sleep most nights, my eating is all messed up, and I am having difficulty articulating the different way in which I’m seeing the world (no not like I’m on opiates).
As an investor – it is important to think about the entrepreneur or corporate leadership team that you are investing in – do they truly understand the problem and care about the customer or are they just selling a solution or selling the most profitable thing they can find? Experience tells me that the former is the most profitable and satisfying in the long run – although figuring out who those entrepreneurs and leaders are is a hard task that takes a lot of time searching and trying to find the right one. Just like searching for the right doctor – the person who has the right resume may not matter, the person who’s job it is to perform a duty may not be the right person, the person who has the right experience may not be the right person. There is an internal drive, a quest for customer satisfaction, a desire to learn, and a tenacity for curiosity within a problem space that matter more and finding those attributes can be difficult if we let all the other signals our society has trained us to look for get in the way.
Oh – why do I regret the Stellate Ganglion Block? One of the side affects that the team at the Washington Center for Pain Management forgot to mention is death – fuckers!
The really shitty part is that society has known about Complex regional pain syndrome (CRPS) for a long time – in fact the pope was diagnosed with the name we used to use Causalgia (that’s why the cross motion that the catholics make is with a straight forearm raised – the pope was in pain and preferred to hold his forearm up instead of just using his hand like those before him).
A few things to read for the close friends and family who read my blog…