Our experiences

RUS is a rare condition. Everyone's experience is different; while some face many challenges in daily life, others have lived pretty normal lives.

Please email us at isabellap@radioulnarsynostosis.com if you wish to have your experience added here!

Isabella(South Korea)

What kind of RUS do you have?

I have bilateral CRUS.

What is your current level of mobility? Do you experience any pain?

My left arm rotates to 90-degree supination while my right arm has almost full mobility(approximately 150 degrees). I have experienced some pain in the elbow or forearm muscles in the past following rigorous activity, but it is not a daily occurrence.

Have you considered/received treatment? If so, was it successful?

I have not considered treatment because the risks of surgery significantly outweigh any challenges that CRUS poses in my daily life.

Have you ever faced challenges or negativity because of RUS before?

Thankfully, everyone I have felt comfortable opening up to about RUS has been understanding of my circumstances.

Do you engage in any activities that would normally significantly impeded by RUS?

It took me a while for me to go beyond soccer and try an activity that involved using my arms, but I now love dancing even though some of the moves look off.

Anonymous

What kind of RUS do you have?

Not sure. I broke my left arm when I was little, but also RUS can begin subtle and progress as you get older. Doctor isn’t sure and my family isn’t sure when it became noticeable.

What is your current level of mobility? Do you experience any pain?

I can’t rotate my left wrist/hand at all. I don’t have constant pain, only if I overuse my arm.

Have you considered/received treatment? If so, was it successful?

Yes, in 2019 I got a surgery to reset my hand into a more usable position. It was successful and eliminated the pinched nerve in my left shoulder.

Have you ever faced challenges or negativity because of RUS before?

Not necessarily discrimination, but I couldn’t do some sports growing up. I simply couldn’t do gymnastics or dance, it was an issue of mobility and ability but not discrimination.

Do you engage in any activities that would normally significantly impeded by RUS?

Yes. I became a professional musician and have my instruments customized. I also do plenty of others things that are made more difficult by RUS like sewing, cooking, crocheting, swimming, rock climbing, typing on a keyboard and many more I’m sure.

Diego(USA)

1. What kind of RUS do you have?

Unilateral proximal CRUS.

2.What is your current level of mobility? Do you experience any pain?

I have full elbow flexion but limited arm pronation with associated wrist stiffness. I experience some pain after repetitive motions and labor-intensive activities, but the pain has been very manageable thus far.

3. Have you considered/received treatment? If so, was it successful?

have not considered treatment. At this time, I don’t believe the surgery is worth the risk.

4. Have you ever faced challenges or negativity because of RUS before?

Luckily, no.

6. 5. Do you engage in any activities that would normally significantly impeded by RUS?

Due to the nature of my university coursework, research lab responsibilities, and workplace tasks, I spend a significant amount of time typing. I am getting along fine but it is always a challenge—especially on days when I have lingering joint pain. Recently I have taken up kayaking. It’s physically demanding on my arm, but I love it.

Fast-Platypus-4684(US)

What kind of RUS do you have?

Congenital RUS. Fused at the proximal end (elbow) of the radius/ulna.

What is your current level of mobility? Do you experience any pain?

Left hand supination of about 60° and right hand is neutural or 0° supination. I do experience pain.It started with just pain in the morning & progressed to random pain throughout the day and even my arm “locking” at the elbow.

Have you considered/received treatment? If so, was it successful?

I have not. I did research but I did not discover my conception until I was well into my 20’s and I was under the assumption that corrective surgery would not make a large difference.

Have you ever faced challenges or negativity because of RUS before?

I have not. Only the super observant tend to notice, and when they do, they ask questions out of curiosity. Most only notice when I make my own joke about it.

Do you engage in any activities that would normally significantly impeded by RUS?

Bowling and lifting weights are two things that required some adaptions.

Katja/katjapetersart(Netherlands)

1. What kind of RUS do you have?

I have post-traumatic radio-ulnar synostosis.

2. What is your current level of mobility? Do you experience any pain?

I had approx 0,0 movement starting in 2018. Currently, my mobility is about 90 degrees pronation, 10 degrees supination. I have been mostly pain-free for more than a year, with occasional distracting pains that do not need medication. Before my surgery, my pain was debilitating. I was taking the maximum dose of over-the-counter medications. I was in treatment in the pain care center in my local hospital and thankfully found a method (iontophoresis) that helped reduce pain a little bit more long-term.

3. Have you considered/received treatment? If so, was it successful?

My RUS was post-traumatic, from my 10th onward (I am now 22). I had physiotherapy after the break, surgery to loosen the scar tissue around the site, and was around 13 when the RUS started to appear. It was not diagnosed for approximately 4-5 years, although I faced increasing pain, movement loss, and mental health issues due to chronic pain. In 2018 I had another surgery to try and remove the fused bone. When that failed, a German specialist was called in. In summer 2019 he provided my diagnosis and treatment plan. It involved a rare surgery to cut the radius and thus free up the range of movement in my arm while leaving the fused part alone. A salvage operation. It also involved nearly a year of intense physiotherapy.

The surgery is described in Proximal Radial Resectionfor Posttraumatic Radioulnar Synostosis: A New Technique to Improve Forearm Rotation BY SRINATH KAMINENI, FRCS(ORTH), N.G. MARITZ, MMED(ORTH), FCS(SA)(ORTH), AND BERNARD F. MORREY, MD, 2002. The aim was to restore pronation and reduce my chronic pain.

This was a great success for me - i am happy to report that I have a near-normal pronation, almost 2 years post-op. Depending on day and how much i've stretched or worked it, it can be 90 degrees. Even on 'bad' days the condition is not impactful. Supination is more minimal, 10 degrees maybe, but that was not the aim. My chronic pain is entirely manageable with 0 medication (before this I was on several long term treatments and on the edge of using opiates).

The rehab was very intense. I am a student and had to take a year off. Think pt 3-5x a week, medication build-down after years of chronic pain, and psychological treatment to work with medical trauma and this change in my life. It is absolutely one of these surgeries that gets out what you put in. You need to dedicate everything to rehab for half a year and then be prepared to go to rehab every few days still for another half year.

4. Have you ever faced challenges or negativity because of RUS before?

I have faced discrimination, mostly based on invisible disability. But these instances havae been rare. I have sometimes been refused a place to sit in the bus, felt pressured to severly push myself in order to get along with my study, or otherwise not respect my own body. Thankfully I also have good experiences. I live in the Netherlands and I had no issue in wearing a sling and pressure sleeve, getting adapted tasks at a summer job (such as only doing register work and not loading work), and getting adaptations for my studies through the dean's office.

I also have good experiences with using the disabled toilet to take medications in peace and without looks. This is also a heavy mental load, and it requires you to accept that it is a disability. Which, for me, the pain and movement restriction absolutely was. It was why surgery was so attractive to me.

5. What are some adaptations you make in your daily life? Any particularly useful adaptations you want to spotlight?(feel free to attach photos for this)

The biggest adaptation was energy budgeting. When you have as severe as chronic pain as I did, it is incredibly important to budget your energy. Look up spoon theory, get familiar with it, and get the people around you to respect it too. It sucks. But energy is your biggest resource. As for mobility aids, I had none. My mobility was 0, so all aids were focused on reducing movements and thus reducing shocks to the pained area. I regularly wore a sling, especially while working. The sling helps to keep the arm at rest, while also visibly communicating an invisible disability to the outside world (useful for public transport). I also used a pressure sleeve for psychosomatic pain relief. I used a heavily tented keyboard designed for use with disabilities, to allow me to work on a PC. It is not perfect, but as good as it gets. Combined with a vertical mouse, it was an important setup. My keyboard is called a kinesis freestyle, and this was the set-up(attached below). Not included here is the pet store ice gel mat for animals to put under your elbow for support.

My biggest aids were medications. I used most over the counter stuff on a regular schedule, including timers. It is important to build a level of painkiller in your blood. However, it is even more important to discuss pain management with your doctor.

6. Do you engage in any activities that would normally significantly impeded by RUS?

Before my surgery, I felt incredibly disabled. This is different for many people with congenital RUS. Not everyone wants or needs 'fixing', 'curing' or 'helped'. I however felt severly impeded. I was a cellist from 4 years old and had to stop due to the pain and mobility issues after 12 years of playing. I did high level karate and over the course of several years had a painful and long falling out with the sport. I struggled to get to social events because of my energy levels and my mental health was a wreck. The biggest take-away here is to discuss your chronic health issues with your doctors and *include your mental health*. Chronic pain sucks. Nowadays I do a lot of typing and drawing on regular keyboards. My surgery was a great success and I am nearly pain free. As a result, I do high level karate once more. I am a visual artist and social worker in training. I am able to start rebudgetting my energy and finally healing from the terrible, pain-filled years I've had. I'm happy to have a non-disabled life, even if I do still have some minor adaptations in range of movement and what I'm allowed to do. I no longer feel disabled as I did due to my pain. Not everyone with RUS will have my experience or feel disabled like I did. But it was very tough for me.

I am not cured of RUS. The condition is still there and will continue to progress however it likes as a type of bone growth. But it is no longer being stressed, and thus the pain is relieved.

The biggest takeaway from this story is that not everyone with RUS feels disabled or needs to be cured. But if people are complaining of pain or mobility issues, take it seriously! Post-traumatic RUS is rare but can really severely impact your ability to function if it comes with pain.

I'm very happy I had my surgery, even if the recovery was incredibly tough. But it is not for everyone. Discuss with your healthcare provider.

I'm happy to answer questions or chat on Facebook, Tumblr, Instagram @ katjapetersart or at katjapetersart@gmail.com .

snakes-pencil (Gideon, US)

1. What kind of RUS do you have?

Congenital Bilateral RUS. Fused near the wrist and elbow on both arms, although I don't know exactly where.

2. What is your current level of mobility? Do you experience any pain?

I can rotate my arms until my thumbs face straight up, and further if I lean over a lot, although this is uncomfortable. I experience pain primarily in my wrists and arms, although occasionally my elbows, because RUS make them hyperextend so they point inwards. If I write for more than a paragraph, my wrist hurts a lot, and I also experience pain if I try to carry anything unwieldy. I also get aches in my arms and wrists from everyday use.

3. Have you considered/received treatment? If so, was it successful?

I was diagnosed ~2-3 years old, and the doctor said they could do surgery on one arm to give it full range of motion, but the other one would be stuck palm-up for the rest of my life. Went to an arm and hand specialist at ~14-15 and they said the same thing, although I did get x-rays that showed my bones were fused in two places instead of one.

4. Have you ever faced challenges or negativity because of RUS before?

I was bullied a little bit for the way my arms looked, and I am still self-conscious of them today, as they are skinnier than the rest of my body (cause I can't really build muscle in them at all) so I prefer to wear long sleeves. Other than a little teasing, nothing much, although people do tend to comment on how weird some of my movements are.

5. What are some adaptations you make in your daily life? Any particularly useful adaptations you want to spotlight?(feel free to attach photos for this)

So many! I can't really think of specific ones, but I do have to hold utensils in a fist and prop my elbow on the table, ask someone to carry heavy stuff for me, and I always fold down the flaps of cardboard boxes (if I can lift them)

6. Do you engage in any activities that would normally significantly impeded by RUS?

Oh yeah. I love crocheting, but it just hurts after a while. Typing on a keyboard and writing also hurt my wrists, although the latter more frequently. This really impedes my typing skill, as I cant do it fast enough, and it means that I always have to write really fast, often muddling my words so that I can get everything down in time. Probably many more things that I can't think of as well.

brayinghorse

1. What kind of RUS do you have?

Bilaterally. Not sure where the fused bit is. I had some x rays when I was about 3 but who knows where they are now. Not sure what degree of movement I have but if you imagine my left hand is palm down in front of me, I can move it so my hand is in the 2 o’clock position. My hands are small and lower than my wrists if you look at them side on. Sort of like a spoon handle. ;-)

2. What is your current level of mobility? Do you experience any pain?

Didn’t experience pain when younger but handstands and press ups have always impossible due to the pressure on my wrists and elbows. I have a massive bulge of muscle on top of my wrists. I guess from having to over compensate somewhere along the line. My elbows are slightly constricted too, this has got worse as I’ve aged and when I lift weights, I get a funny click as if a tendon is moving across my elbow which hurts a bit. My husband says he gets this sometimes so maybe it’s a normal thing and not just a RUS thing! Sometimes get shoulder pain as I tend to overcompensate with some movements. Turning doorknobs can be tricky. Keys in locks. All these things are small but add up.

3. Have you considered/received treatment? If so, was it successful?

No treatment has ever been offered to me. I went to see a specialist in my early 20s who said the only thing he could do was reposition my hands so they faced my body and not to the back of me and he didn’t recommend it. He said he saw new patients with this once every 2 years. A few years ago, I did find a hospital in India which had a treatment for RUS but from the videos it wasn’t clear what they actually did. It was weird seeing children with the same wonky arms as me as I’ve never met anyone else with it. I did send them an email to see if they would be willing to treat me but I never heard back. I would still go for surgery if it was offered. When I think about it sometimes, I wonder if surgery could give me an elbow replacement?

4. Have you ever faced challenges or negativity because of RUS before?

Not discrimination because I hide it as much as I can and have never gone for career roles where it could be a problem. It’s been desk jobs only for me. I was bullied about it when I was a child and that was painful. Name calling and stuff like that. I’m pretty introverted as a result.

5. What are some adaptations you make in your daily life? Any particularly useful adaptations you want to spotlight?(feel free to attach photos for this)

I’m trying to think of adaptations and it’s tricky as I’m so used to my limitations but cooking can be tricky. I’ve given up cutting onions and buy them diced. Ditto butternut squash. It’s too difficult! I also bought a top loading air fryer and burnt myself so many times getting hot pans out of it that I’ve switched to front loading one now, like a mini oven. SO much easier!

6. Do you engage in any activities that would normally significantly impeded by RUS?

I do fitness classes and lift weights, as heavy as I can. Obviously I have to adapt my exercises to suit me and this can be frustrating but I manage. My rational is that as I already have a disability, I don’t want another one so I want to remain as active and mobile for as long as possible.

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