Healthcare in the US: Patient’s in a game of pong

patientspongI hope readers to this blog never ever have to go into the hospital for treatment of a serious injury, but if you do have an Internet connection so you can research treatment options and be ready to spend significant time battling the forces that control healthcare to get what you want.On July 1st I had a bicycle accident that resulted in a dislocated shoulder and broken humerus.  Even though I spent 3.5 days at one of the best hospitals in the country, Mass General, I still find myself trying to understand the extent of my injury.

My left hand is swollen and I have very limited us of my fingers essentially rendering my left useless (I am typing this post with one hand).  I am going to physical and occupational therapy 3 times a week but the worst part of this injury is the severe nerve pain that is concentrated in my hand and fingers.  To date the recommended treatment has been 5mg of Oxy Codine and a generic medication called gabapentin which is not working. The pain can best be describes as a stabbing pain in my fingers with pins and needles in my hand.

After  requested follow up visit with an ortho surgeon at Mass General I finally received a referral to a pain specialist.  His suggestion was an Rx for Lyrica along with electro stimulation.  However it seems that because Lyrica is so expensive it requires my doctor to call my insurance company thus delaying my medication, and allowing more pain, for a couple of days.

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Then I had the chance to go into my EHR for this problem and learned that I am going to need more surgery to reattach the tendon and repair the rotator cuff, something which no doctor has told me about.  I was the one who had to take the initiative and make an appointment with a shoulder specialist and I am the one who now has to tell the insurance company to expedite my Rx so I can get a good nights sleep and hopefully get some relief from this nerve pain.

My key lessons learned…

1. Use the Internet to broadly research your health condition and treatment options.  Don’t rely on just one health site.

2. If you have access to your EHR go over them with a health care professional.  Both my wife and brother-in-law have medical backgrounds so they were able to shed light on physician notes.

3. Take the initiative when it comes to your health.  Make appointments with other physicians and ask a lot of questions.  Don’t expect that this will be done for you.

4. Challenge your insurance company to approve medications and tests in a timely manner. Also don’t be afraid to ask why certain tests are necessary.

Finally, it’s not about you or your pain.  It’s about controlling costs which means that you can be caught in a system that values cost control above quality of care.  That’s where being an empowered patient can really help.

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