Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope
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.
Remember…
- 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.
Recommended reading
- 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
I am inspired by this woman and her story. I am so happy that she found a physician who would A)listen to her and B)consider her lifestyle while discussing options.
Too often physicians become indignant when patients take an active role.
My elbows are not as bad as this, but often during flares the elbows become “fixed” in the 90 degree position. Thankfully, in my case, it resolves, and mobility returns after the flare.
Again, inspired. Thank you so much for sharing her story.
I agree this is a very inspiring story. Thank you for sharing it. I also agree that ‘too often physicians become indignant when patients take an active role’ – very well stated Belinda.
I think what is most disturbing is why do patients have to take such an active role? Why are we responsible to research the latest information available? Why do we have to ‘find’ a physician who will listen to us and consider the information we have found? How much time do we spend, reading, researching, pleading with physicians to listen?
I am no where near Carolyn’s or others’ situation, but it is disturbing to me that I have mentioned several concerns to two rheums and received a response that it is not related to RA and then I come here and read stories with accompanying research or studies that says it is.
hi Donna, thanks for your thoughtful questions.
I hope the story might be helpful to anyone with an elbow or other joint that’s gotten bad enough it requires surgery – to think long term and think outside the box about what options are – and most of all to realize that there may still be hope & options even if the joint has seemed hopeless.
But you and Belinda bring up the other broader story here for patients – the role we can play in our own care. I agree with you we actually do often know more about the condition & the options than many healthcare professionals, because our lives depend on it & we work hard to learn. And, you’re correct that many doctors will not even consider information presented by patients (about our own condition OR about research we share). As you ask, “why”?
Here’s my guess-
1. With rheumatoid disease, the problem is more common because the “textbooks” are not accurate & docs are taught things that are wrong. (Lots of articles on this site on this one.)
2. With medicine in general, paternalism has been difficult to overcome, although patients have made some big strides in recent decades. (Lots of good books on this one.)
3. And, in rheumatology, there seems to be a predominant dismissiveness that is perpetuated by false constructs about patients (low pain tolerance, hypochondriasis, pain syndrome, catastrophizing, etc.) They publish “academic” articles about patients believing the disease is more serious than it is. (I hope my first book will be a step toward addressing the reality of the seriousness of the disease.) [Edit: I left out “learned helplessness” and “secondary gains” – just came across in a journal article on measuring disease activity.]
Finally, from her story, I don’t think that was the main issue for Carolyn. It seems to me the problems for her were long waiting times and scarcity of care where she lives. Her rheumatologists had nothing to offer her but medication of course, and she decided to find a surgeon who would try a new approach.
I was Diagnosed with RA and my arms have been frozen at 90 degree angles for over 4 decades. I am so glad that some headway is being made for this. I am 61 now and probably won’t opt for surgery,already have had more than my share! I am thankful that I have been able to live a fairly normal life. I truly believe that a positive mindset has helped most of all.
Yes, yes, YES, YESSS !!! Thank you to a young, brave, strong woman. I agree with the comments so far about how frustrating it is that we have to advocate as hard as we do and research as much as we do. Unfortunately, this seems to be the reality and is the case in almost every medical condition. The greatest advances are usually made by the strong, determined people who struggles with their condition teaming with medical people who are talented. Has always been, will likely always be. In my humble opinion, it is a waste of our precious energy to bemoan this fact. What I LOVE about RA Warrior is the “can-do” attitude. There is SO much work to be done to raise awareness of rheumatoid disease, to correct the flat-out WRONG information among medical professionals, and to improve clinical practice, and research funding. WE HAVE A LOT OF WORK TO DO !! Please consider joining the Rheumatoid Patient Foundation and volunteering. I’m so thankful we live in this time where social media has helped us to connect with others to see the common experiences. We no longer will be shamed into silence like our mothers’ generation.
I would be so grateful for the name of the surgeon with whom she met in Ontario. Would be a nice place for me to start my research as my left elbow has frozen and now pulling down my left shoulder. Surgeons with whom I have met have said the surgery isn’t going to be successful but they aren’t dressing with one arm.
From my experience, orthopedic surgeons, even good one, are not too familiar with the ravages of rheumatoid disease. They are also not too familiar with 30-year-olds with destroyed elbows. Joint replacement was really designed for the elderly with their shorter life expectancies and less-active lives. For someone with 60 years left to live (we hope!) who is itching to get back on the tennis court, a conventional joint replacement is a disaster waiting to happen. This situation took an unusual solution. How wonderful she found one.
well said Anne.
I can relate to your story about your elbow. I have had (j)RA for many years and have had major damage in all joints. I’ve had both knees replaced and revised ( one of them twice), and my hip replaced. I was on the waiting list for elbows, which, in BC was two plus years. Both of my elbows had severe flexion contractions and I was unable to touch toward myself with my left arm due to the limitations from the joint destruction. Then the unthinkable happened. My right elbow spontaneously fractured leaving me with almost no functioning arms. While I could still type and dress with my left hand, the right needed to remain in the sling for a few weeks.
I purchased every long handled implement I could lay my hands on. My brother in law fixed a fork and attached it to a dowel so I could eat. In the early days I only had what I could drink with a straw. I made a watery porridge for breakfast and otherwise relied on soups until I could manage the long handled fork. Taking pills was a challenge. An OT suggested that I put them on the counter and suck them up through the straw. I was afraid of choking, so never tried that method. Instead, I put my pills on the counter and just took them into my mouth from there.
The silver lining of all of this experience was that I could circumvent the waiting list for the elbow replacement. In Sept. 2010 I had my first elbow replacement, and a few months later had the second elbow done. Prior to surgery exrays showed that the left elbow also had fractured and neither fracture had healed prior to surgery. The non-union of the bone was likely related to the severity of the joint destruction.
I am near 60 so I likely a better candidate for elbow replacement. I love being able to touch my shoulder with my fingertips or reach my hair with both hands. My arms are almost straight. Mobility is great. I can do so many things now that I couldn’t do before.
The greatest limitation is that I was warned to not lift more than 2 lbs; a rule that is almost impossible to follow. My right elbow already shows signs of loosening but we are only taking care of that with watchful waiting. For the left elbows second surgery was required due to a ruptured tendon. Recovery from the tendon repair was far more difficult than recovering from the elbow replacement surgery.
How wonderful that you found a way to delay replacement surgery. I am happy to hear about your procedure as a means of prolonging the use of your natural elbow and increasing its functionality.
Wonderful story of courage thank you.
Yes do lots of research look at any ‘different’ or new ideas re RA.
I was diagnosed with RA in 2001 and was suffering very badly with pleuritic and ankle attack. My wonderful consultant Dr Ockie Oosthuizen prescribed me Azathioprine which I have taken ever since @150 mg daily. It was like a miracle drug and has held the disease off. I know that it works because the one disadvantage is that it leaves one immunocompromised so if infection arises the first thing I do is stop taking it and if that doesn’t help then I take antibiotics +leaving off tha Azathioprine, usually thet works for the infection but after the first week of being off the Azathioprine my ankles start to hurt, by the end of the second week my ankles are swollen, oedemic and very very painful, it hen takes a further week of returning to the Azathioprine before the ankle attack starts to show some relief and then a further week for things to get back to normal. This happens every time so although the vidence is anectodal I know that it is the Azathioprine that has given me 12 years of Mobility that I would not otherwise have had. So thank you Dr Oosthuizen of Windhoek Namibia you were one of the few of the many people I came cross in the field who knew what you were doing and talking about, I have yet to find another so called ‘expert’ in the field who really knows what they are doing and talking about, especially in the UK.
Waiting lists? Wow. I’m glad that’s not an issue where I live. That’s one reason I buy the best insurance I can afford, too.
I’ve encountered all manner of “attitude” from orthopedic surgeons. The first time I consulted with one about joint replacements in my hands (I was in my 20’s, having gotten RA at 16, and my hands were already a mess), the surgeon was a complete jerk. He was impatient and dismissed my questions with “you don’t need to know that.” Finally, he got frustrated and told me sharply to “go talk to your husband.” Needless to say, I didn’t work with him 🙂
Some years later, I met my current hand surgeon who is top notch and is a really nice guy. He and my rheumy had no problem with me getting my MCP joints replaced at age 35. Yes, they’ll need to be done again at some point, but you have to consider how much pain and disability you will endure without the surgery and decide if it’s worth it to you. For me, given that I work on computers all day, it was a no-brainer. And honestly, the surgery was really not that big a deal. The pain was less than a bad flare and I only lost a few days of work. I was able to adapt to mostly one-handed typing and mousing easily enough, so it didn’t hamper my work much at all.
I’ve had the same issue with the ankle replacements I’m planning to get soon. The old-school method is fusion, but when you remove motion from one joint, the load had to transfer somewhere else (I’m an engineer, so such things are more obvious to me and that was my first concern). With RA in all of the surrounding joints, this means those will wear out faster and cause more pain.
When talking to surgeons, I noted that those who don’t do the replacement surgery will never recommend it. I got the same “you’re too young” argument from the first two I spoke with, in addition to the “ankle replacements aren’t good for people with RA”, but then saw another guy on the recommendation of my rheumatologist. This surgeon told me that age is not a factor for someone like me with RA because it’s a quality of life issue. He said that a lot of surgeons are still basing decisions on older studies and because the newer implants don’t have the same length of usage, they’re unwilling to risk it. He’s been great.
Of course, when I talked with a knee specialist recently and mentioned I was planning on ankle replacements, I was subjected to a long rant about how that was foolish and how my ankle guy was an idiot to even suggest it. He kept trying to persuade me to speak to the head of orthopedics at the facility because I was “not thinking clearly” about my options. It’s really a big wake-up call when you realize that medicine is not an exact science and that doctors will radically disagree on the proper course of treatment. That’s why we need to keep seeing multiple doctors to ensure we’re getting the best treatment for ourselves.
In terms of surgeon paternalism, I think a lot of generic “arthritis” patients tend to be older folks with osteo and that generation seems to put doctors on a pedestal more than younger folks who are used to having much more access to information. My rheumy told me that his older patients really like that first hand surgeon, but for someone like me, who wants more information and who prefers to manage my own care, a person like that is not the best fit.
So, basically, you need to research your options and then talk with multiple doctors about it so you can make the best decision for yourself and your situation. We’re all different, so cookie-cutter rules don’t really work. Add in the fact that most joint replacement patients are older folks and that leaves a lot of the younger crowd being viewed through that same lens, which is not necessarily appropriate for the lifestyles they lead. There’s a big difference between someone who’s retired and leads a more leisurely lifestyle compared to a younger person who is still working and who may be raising a family. It’s not as easy as saying you’re too young or that there’s only one option.
Technology has improved a great deal in recent years. There are now replacements available for many of the joints that give us trouble. Most people have heard of knee and hip replacements, but few seem to be aware of hand, wrist, elbow, shoulder, or ankle replacements. It’s really exciting for those of us who will need multiple replacements to see all these advances that will help us maintain or regain some quality of life.
Tula, I really enjoyed your post. Thank you for taking the time to describe so clearly your journey with replacement surgeries. I agree with you about the older generation perhaps having a different doctor-patient relationship than the current times. Also, we are SO fortunate to have social media to share knowledge and experiences. We will no longer be shamed into silence and isolation.
I would encourage you to please be careful in making statements about lifestyle differences based on age. Many of us older folks continue to have or strive for the same active professional careers and active lifestyles well into the twilight years. Please don’t assume that age has anything to do with wanting a great quality of life or enjoying a high level of activity. These types of prejudices can and do impact medical care, unfortunately.
I am in exactly the same position with my elbow, while it is not locked I a 90 degree position anymore, it is very painful and has no cartilage left in it. I am awaiting a full elbow replacement, but will certainly be asking my surgeon if this may be an option for me.
Wow, these stories are amazing, and scary at the same time. Thank you for bringing us these remarkable stories.
Wow. What an inspiring young lady. So glad she found some relief and I hope and pray that it lasts for her.
Very inspiring-thank you so much for posting your story and especially for the pictures! I am 45 with RA, and for years I’ve been afraid of falling and can’t use a bathtub because I don’t have any way to get back up-destroyed knees plus my left elbow and right wrist all prevent me from getting any leverage. My left elbow has been locked at 90 degrees for years, and I had my right wrist fused last December, 2012. My hand was getting more painful and weaker by the year, and many of the bones had shifted to the middle of my wrist and partially fused on their own. Besides the fusion, the surgeon did bone grafting, nerve severing, and removed the ulna head. The surgery was a rough recovery, but it was well worth it, even though going off of all meds put me in a huge flare for months afterward. When I went back on Humira it had stopped working for me so we switched to Orencia, which also failed. Starting Remicade next week, and am also on injectable MTX and low dose prednisone. I had lived with pain and decreasing function for such a long time until I finally asked my PCP for a surgeon referral. I’m gearing up to do the elbow next year once my bloodwork hopefully stabilizes-it was surprising (well, maybe not) how my rheumatologist didn’t tell me about interventions for individual joints that are destroyed, or how OT and PT can help-I’ve had to figure it all out on my own! Take care and keep up the fight!
I would like to know how Carolyn is as of today June 2014. is her elbow better after the surgery?
I have the exact same thing on my right elbow and need wondering about surgery if I should go ahead with it or what. please let us know how Carolyn is doing today.
Its soothing in a sense to read other people’s woe’s regarding RA. I was diagnoised with juvenile RA at 13, It began to ravish my finger joint’s, wrists,toe’s and knee’s not long after. At 20yrs old i had my daughter, but while pregnant and on less medication, my right elbow began to stiffen, with in week’s it totally locked. Im now 34 and my elbow is still in the same position 🙂 I was told by a surgeon i wouldnt really benifit from an op. My body’s now riddled with RA and osteo, my toe’s are seriousley deformed my right ankle has fused, finger’s crossed 🙂 i’ll be having two knee replacements with in this yr and next, Im unable to straighten and bend my knee’s, their wrecked. Im having a hip replacement next mth, which im looking forward to (sounds daft) i know but after having two op’s previously which have failed, a dynamic hip screw and a bone graft in the last 7yrs. My other hip is affected too, walking is a real struggle but i refuse to use a wheel chair and crutche’s, i maybe slower than a snail but i get there. My wrists have fused so ive got little movement, its annoying trying to collect change from the shop keeper lol. Ive sprained my cervical spine which eventually RA’s taken over making it difficult to move my head, i have RA in my jaw too which is very painfull i find it hard to chew and laugh sometime’s, trip’s to the dentist is a nightmare. Methatrexate hasnt helped my hair’s thinned so much and ive lost 6 teeth over the period of a yr. I take 2mg prednisolone and refuse to take anymore i was a petite 7 1/2 stone but problem’s began with my hip and i was put on a high dose. I gained 5 stone within a year, which sent me into a hell of depression, i havent been able to loose much, but as we know more weight put’s pressure on our joints. My specialist hasnt done a great deal for me over the year’s, for seven year’s ive had a bacterial inf in my hip due to a reaction from the hip screw. It was only discovered when they tried to remove the screw, I was put on Iv antibiotics for 3 mths, but after having routine blood tests every four wks in that 7yrs it was never detected. Diabolical. But hopefully the hip replacement will ease the pain, instead of the metal my surgeon’s going to fit a cement surgical hip. The love and support from my daughter and family keep me smiling, i still try and live a semi normal life, Were all unique even if some parts dont work aswell as other’s 🙂
I am a lucky 28 year old who was diagnosed with Juvenile Rheumatoid Arthritis when I was 11 years old. The disease was found after I told my Primary Care Physician that my arms didn’t extend all the way. At the time it was slight and could be hid. Although my arms aren’t/weren’t bent at 90 degrees they don’t extend any further than 115 degrees now if you hold a protractor to it and when my arms are bent at their fullest potential I can’t touch my shoulders. They tried medication and physical therapy to keep my hands a from deforming and to reverse the damage in my elbow joints. After a while because I was a child I was just fed up and wanted to live the life that I had lived 8 years before my diagnosis. When I was 17 I talked to my Rheumatologist to see what my options were for joint replacement. I saw some special on TLC about a girl who got her hip replaced because of Rheumatoid Arthritis and I wanted to know if the same thing could be done for my elbows because I was tired of trying to hide my visible disability, not to mention the pain associated with it. The first thing they wanted to do was begin infusions. I began getting Remicade infusions, and stopped with I was 18 because my mom lost her job and I no longer had insurance. I didn’t seek medical care for my condition until now, ten years later. I’ll never do that again for one. For two my Rheumatologist flat out said that there really wasn’t anything they could do for the lack of joint mobility but they can prescribe medicines to help with the pain and prevent further progression of the disease. I was referred to a Hand Center in my area. I went for my first appointment with them yesterday. Their first approach isn’t surgery, which was fine to me, but the doctor also said they provide splints and therapy to help patients “cope” with the disease, and I received a steroid shot in my left elbow to see if that would help with the pain. After the appointment I thought, “Cope with the disease huh? I HAVE BEEN COPING WITH THIS CRAP FOR 17 YEARS NOW!” I wasn’t able to do anything a normal child or teenager could do without being stared at and so I tried into disappear most of the time! People made fun of my illness even though I was in pain just because my arms and wrists, looked different and I walked funny. The teasing may have stopped since I care about what others think a lot less but that doesn’t remove the fact that I’m still very self-conscious about my arms and I still get stares and flares. My left hip is practically bone on bone and I’ve received a steroid injection in May that has wore off. I’d hope to find relief or some sympathy from the medical community for the turmoil I go through on a daily basis like Carolyn was finally able to receive. Until then, I’ll just continue to smile though the moments when people tell me I’m too young to have so many problems with my joints, and moments of being unsure and in pain.
Do you have the doctor’s information I would love to contact them I have the same issue exact issue
This whole story has really inspired me. I can’t stop reading it, Carolyn’s story has really given me hope for my future battling RJA. I was 3 years old when i was told by doctors that i had JRA and ever since then my life has been different. I’ve been through hell battling it, with medicines and eye drops. The JRA caused me to get Uveitis in my eyes, a inflammation of the eyes. When i was younger i had it in my left eye, it was so severe i had to have eye surgery for it, but just recently it has come back , but in my right eye this time. Now i am hoping i will be able to beat this as well. I am now 16 years old almost 17, and my right arm is locked at a 90° angle from JRA. I will soon be going back on medication for it that makes me really sick but I’m willing to try anything just to control it. This story has given me so much hope now, i hope that the doctors will be able to do the same for me as they did for Carolyn. I am determined now to not give up and keep fighting no matter how hard it gets. Thank you so much for posting this story, it really brought hope to my heart and has moved me deeply.
I had RA since I was 23, I am now 42 .My elbow cartilage is completely gone. I have limited mobility. I really need help to find doctors in nyc. If anyone knows a great surgeons in queens or Long Island, please contact me.
Hi! Is there any update with the patient on how she’s doing after the surgery? IM DYING TO GET MY ELBOW REPACED TOO ?
I am interested to know how the elbow is doing now. I have the same problem with my elbow and was told elbow surgery isn’t very successful and only lasts 10 years. Do you have any updates? TIA
any update on Carolyn? I’m planning to have my elbow surgery this year. I want to know how she’s doing now. Thank you 😀