SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I’ve ever seen. (See our many posts here about her activism.) Aside from all her work on RAWarrior.com and her Foundation, see how she uses this case to teach. Peer-to-peer healthcare:
Research of an engaged patient rescues her elbow
I hope you enjoy this inspiring story of a young woman’s struggle to get the best treatment for her elbow destroyed by Rheumatoid Disease (RD). Carolyn is a brave patient who researched to find a procedure to relieve her pain and restore movement to her elbow. She illustrates key strategies for e-patients battling any tenacious or evil disease like RD.
- Never, ever give up hope.
- Do not take “No” or “Wait 10 years” for an answer, if you believe there is a better way.
- Believe in yourself and your ability to find someone to help you.
Here’s the story of Carolyn’s elbow, in her own words.
e-patient’s Rheumatoid Arthritis / Disease elbow surgery story
I wanted to share this story in hopes of helping, encouraging, comforting or simply chatting with anyone who might be in similar shoes as I was – confused, scared, frustrated and lost in a world of conflicting surgeon advice and various rheumatologists throwing drugs my way to try to fix an already destroyed elbow.
I have included a few photos of the pins in my arm, and how straight my arm was just two days after surgery. It has been almost 2 months now and I will be getting the external fixator removed on Tuesday. It is very stiff and the mobility is about 130 (145 is normal) degrees straight to a 30 degree bend (45 is normal) after a physio session, much better than the fused 90 degree position I had before.I am finding it much easier now (and more or less pain free) to do simple things that I have struggled with for 4 years – do my necklace up and put on earrings, tie up my hair, open a can with a can opener, open doors, drive my car, play my piano etc. I am looking forward to canoeing this summer, and perhaps a tennis match if the surgeon permits.
While it is still early days, and some complications may arise (donor tendon slips, RA attacks it again), for now the surgeon, physiotherapists, and I are very happy with the results so far.
Trying to treat Rheumatoid Arthritis attacking Carolyn’s elbow
I was diagnosed with rheumatoid arthritis in 2003 (22 years old). It initially attacked my knees, ankles, and wrists. After some time and much medication, the arthritis seemed to settle comfortably into my right elbow, and as of 2007, I began to lose mobility. Of course, the reduced mobility correlated quite well with increased pain. In 2009, I had an arthroscopic synovectomy performed, and despite an apparently straight arm during surgery, the intensive physiotherapy program that followed proved to be unsuccessful and mobility was further reduced following the surgery.
Few options offered for “worst elbow,” such as waiting a decade
In consultation with a few local surgeons, I was informed that replacement surgery should be held off for as long as possible with some mentioning that they would not be willing to perform the surgery until I was at least 40 years old, based on how quickly the joint replacement would wear out and need to be re-performed.
In late March 2012, when my elbow mobility suddenly severely worsened, I contacted another surgeon, and after a 3-month wait, I finally met with him on July 26th. After looking at my elbow (including MRI and X-rays), he mentioned that it is “the poster child” for the worst elbow. He then informed me of the 2 to 3 year wait for replacement surgery. I was offered other options, which included an elbow fuse into one permanent position, or what is called an interposition where tendon would be taken from my leg and transplanted into my arm, however the best recommendation at this time was to wait 3 years for the replacement. I put my name on the waiting list.
At currently 31 years old, my elbow was locked in a 90 degree position with maybe, on a good day, a few degrees mobility give or take. The pain required daily doses of painkillers for a minimal amount of relief. Basically my cartilage had disappeared and my bones were rubbing on each other and eroding (as I understand). In answer to the question ‘Was I desperate for surgery?’ the answer would most definitely have been a big YES. Waiting 2 – 3 years in that sort of pain was most undesirable and I was considering surgery in the U.S. or the U.K. should wait times be less than in Canada.
Research, a novel approach, and renewed hope
Being a researcher myself, I sought out to find a surgeon who may be able to use me as a guinea pig for some possible new procedure just to be able to have the chance to possibly feel some relief, to further help others even if the surgery wasn’t the most successful, and ultimately to prevent this situation from becoming a more common occurrence for others. So I began researching online and found a surgeon in Ontario. I emailed him my story and within 4 hours he had responded and asked me to go and meet him.
After some discussion, he convinced me that the best option was an elbow interposition arthroplasty allograft, as opposed to a full replacement. In fact, he said that he would not recommend a full replacement at all considering my age and lifestyle. An interposition involved separating my bones, and sewing donor Achilles tendon onto my bone surface to act as cartilage. I decided to go ahead with this procedure and on November 15th the surgery was performed.
I am wearing an external fixator on my arm at the moment (have attached a picture), which I will wear until mid-January to keep my bones separated, but I already feel so much relief and am able to hang my arm down by my side like a normal functional arm. It is still fresh, but I am able to carry out a lot of tasks already that I haven’t been able to do in 4 years. There is not telling just yet if the RA will resume it destruction of my bone and donor tendon, or if the surgery will remain a success, but I feel like I have hope now.
Postblog: Carolyn’s story reminds me of another inspiring young woman, Becky Bader, who also researched her (hip) condition, found a talented surgeon who believed in her, and helped her be able to run again. To read Becky’s story, click here. My friend Becky will be running an Ironman race this Sunday – you can watch here. And she ran the Boston Marathon again this year – I texted her after the explosion to see if she was ok, and she had already finished and left the area.
Be sure to read Becky’s recent blog post on rheum4us.org about her hero, her brave and resilient aunt Susan, who lives with Rheumatoid Disease – click here.
HAVE YOU BEEN IN A CLINICAL TRIAL IN THE PAST YEAR? Here is an opportunity for those who have completed an RA clinical trial in the last 12 months (or by Sept. 1, 2013).
Here is an opportunity for those who have completed an RA clinical trial in the last 12 months (or by Sept. 1, 2013).
To qualify, you must have completed a clinical trial in the last 12 months.
Note this is NOT a clinical trial, but an opportunity to share your opinion about participating in one. If you qualify, likely you have much to say!
For those who participate, FACP will donate $100 to the Rheumatoid Patient Foundation (RPF).
If you are interested in participating, please email email@example.com.
Use this as the subject of the email: “QUAL research for RPF.”
- A Spoonful of Sugar from the Lab of Professor Rebecca Bader
- Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease
- Health Data Is Like Yogurt: Full of Possibilities
- What Drives Patients to Get Engaged in Healthcare?
- Invisible Illness Awareness Video