CRPS in the City

Because living in nyc wasn't crazy enough!

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On Medical Error

Did you know preventable medical errors kill and seriously injure hundreds of thousands of Americans each year? A study estimated as many as 98,000 people die each year due to preventable medical errors. (source)  With preventable medical errors occurring so frequently, it’s pretty much inevitable that those who are chronically ill will experience at least one error, if not more, in the course of their illness. I know I have.  

This is a topic that is really close to my heart.  My complex regional pain syndrome (CRPS) was caused by medical error.  One could argue that it was a standard risk associated with having an epidural steroid injection in the neck, and it is, however the physician who administered my injection admitted to making an error.  My own lack of knowledge, not asking the right questions, being too trusting of the doctors, probably contributed to this, but at the end of the day, I’m not the one at fault, it was the doctor.  

In the past 3 years since developing CRPS, I have become much more informed and knowledgeable. I ask many more questions, I do a better job of advocating for myself than I ever did before. I have learned that I, as a patient, have a responsibility to myself to prevent further medical errors. Unfortunately, these things still occur.

Two weeks ago, I had a port-a-cath placed in my chest. The port provides my doctors with instant venous access for procedures and blood draws. I have horrible veins in general, and each stick for an IV puts me at risk for CRPS spread.  I knew eventually I would end up with a port, so I had done my homework.

Before my procedure I spoke at length with the nurse who would be assisting during the procedure. I spoke with a PA as well. Unfortunately the doctor who performed the procedure did not speak with me prior to the procedure.  Maybe that should have been my red flag.  I told everyone I spoke with about my various allergies to medications, adhesives, and Dermabond. Dermabond is a surgical super glue that they tend to use now and days.  It’s in theory a great product. No stitches to remove, you heal faster, less scarring. Except I’m very allergic to it.  

I’ve had allergic reactions to Dermabond a number of times in the last year. Each reaction has been worse and worse. Originally it was just a slight rash, then local hives, then hives all over my body.  I mentioned this to everyone I could prior to my port placement.  They told me they would use old-school sutures and no Dermabond.  Well I’m sure you can guess what happened next…

For whatever reason, the doctor who was actually doing my procedure missed the memo on the Dermabond. I guess the nurse and the PA didn’t communicate it well? I honestly don’t know. But my reaction this time was much worse than ever before. My whole body was covered in hives, my breathing was very affected, my throat felt like it was closing up.  Lots of steroids, lots of Benadryl, and a whole bunch of other drugs later, the allergic reaction was finally under control. 

But then the redness on my chest got worse again.  Just my luck, I developed cellulitis, an infection of the skin, around my port.  They said this was likely due to the bad allergic reaction I had and the inability to keep everything clean and dry post-op as one should.  In addition, the steroids reduce the immune response and spike the blood sugar, creating a perfect environment for bacteria to flourish.  

I’m still getting over my infection and my port may need to be removed and replaced as I’m still spiking fevers.  The worst part was that this was 100% preventable. I share this story to just remind everyone that preventable medical errors are very common and PREVENTABLE.  Advocate for yourself. Ask questions. Stand up for yourself. If you are a victim of an error, report it. Don’t be a statistic. 

Filed under spoonie medical error Hospital port portacath infection allergic reaction

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iinevitablelove asked: Hey there, I hope you are doing better. I know what you are going through, I have a very close relatives that suffering from the same diseases but she has it in her leg for almost 4 years now. And she will be doing the SCS implant. I just wanted to know, was there any specific reason that SCS didn't work for you? take care and Thanks in Advance!

The SCS actually did work for me. It’s the only thing that’s ever been truly effective for my pain. I did however run into a number of complications.  My first SCS leads were percutaneous leads or “spaghetti leads”. They are basically long straight wire electrodes that put into your spinal column. It’s a much less invasive surgery and easier to recover from.  That said, it’s less secure. After my surgery I lost 25 pounds rather quickly. With that weight loss, my battery shifted and pulled the leads out of place and my SCS stopped working. I had the leads put back in place but ultimately they moved again.

I then switched to a paddle lead. The paddle is an oar shaped electrode and basically is sewn to your spinal cord. That puppy isn’t going anywhere. Now, there is always chances a paddle could break or move, but if that happens, you’ve probably been involved in some bigger trauma and you’ve got much bigger problems.  When my paddle went in February 2013, I immediately had much better coverage than with my perc leads.  Unfortunately I got a really bad post-op staph infection. The infection almost killed me.  I eventually did recover after many months in the hospital, multiple surgeries, lots of meds, and countless complications. 

Back in October 2013 I had the SCS put back in. It’s been awesome and given me a lot of relief. Sadly my CRPS is starting to spread into my shoulder and chest. My SCS really only stimulates my arm, but doesn’t hit my shoulder. I have great coverage from the elbow to my fingers.  I may need to get another lead put in in the future to cover the spread of my CRPS.  

With all my complications, I still must say, the SCS has been the best treatment for my pain. I know it doesn’t work for everyone, but I highly recommend people do a trial. The trial isn’t much more invasive than a routine nerve block and then you know if this is a good treatment option for you. I hope the SCS helps your relative. No one should have to live in pain.