How I Chose to Manage Hand Surgery for RA and Problematic Medical Terms

Recovering from the physical impacts of surgery was only one part of the story. The emotional impacts led me on a self-care journey to start loving the parts of myself that I once deemed unlovable.

Rheumatoid arthritis (RA) typically affects the joints of the hands, feet, knees, and hips on both sides of your body. It affects people differently, and in my case, my hands have always been affected the most.

This is particularly challenging since I’m a writer. About 4 years ago, a rheumatologist referred me to an orthopedic hand surgeon for severe boutonniere deformities that had developed on my left pinky and ring finger.

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What are boutonniere deformities?

A boutonniere deformity describes a condition when the middle joint of your finger (also known as the proximal interphalangeal [PIP] joint) is flexed inward while the joint at the end of the finger (also known as the distal interphalangeal [DIP] joint) points out.

It affects your ability to straighten your finger and might mean it remains in a bent position. It can affect the fingers’ dexterity and your ability to do everyday tasks. 

Boutonniere deformities can occur due to an injury or an underlying condition, such as RA.

What treatment options are available, and what worked for me?

My boutonniere deformities started 10 years ago and were very mild.

I tried all nonsurgical treatment options first, and they did help. I had occupational therapy sessions to try increase the flexibility of the affected joints, corticosteroid injections to help reduce any inflammation and swelling, and I also wore various splints to help stabilize the fingers. 

But as my boutonniere deformities worsened, it was nearly impossible to straighten my affected fingers. And in more advanced cases, like mine, surgery might be advised or required.

Why I decided to have surgery

Previous treatments I’d used were no longer effective. It hit a breaking point when a splint I had worn to help straighten my finger caused a nodule to develop, which later became infected. I knew that I needed to consider new treatment options.

And I had no options left other than surgery.

Of the surgeries available, replacement of the middle joint of the fingers is rarely done. When the boutonniere deformity is mild, surgery to repair the tendon and surrounding soft tissues can help. 

But in my situation, the boutonniere deformities were severe, and fusing the middle joint was the only way to make my hand functional again. This would result in me losing the ability to bend the fused fingers fully. For me, the pros of the surgery outweighed the cons. The boutonniere deformities were painful and made everyday activities difficult.

So, 4 years ago, in 2019, I was referred to an orthopedic hand surgeon to hopefully start the process.

Meeting my surgeon and knowing he was ‘The One’

Even though I trusted my referring physician, I needed to scope the new doctor out for myself.

Thankfully, I knew from the first appointment that he would be the surgeon to do the job. While waiting in the office, two of his previous patients stopped in to personally thank him months after their procedures.

I could tell just how much his patients appreciated his help and trusted him.

The first appointment was quick, but it left me feeling hopeful. After taking X-rays and examining my hand, the surgeon agreed that surgery would be a good option.

But then the pandemic hit, and I didn’t feel safe planning surgery. Plus, flares, medication changes, and COVID-19 vaccines all led to some delays.

Four years later, I was ready.

Surgery preparation

The pre-op phase was seamless, and I attribute this to the expertise of my hand surgeon’s medical practice.

I needed medical clearance from both my rheumatologist and primary care physician within 30 days of the procedure. I felt relieved that I could start preparing for surgery. But it definitely started to feel more real, and some fear and anxiety crept up.

So, I focused on my mental and emotional well-being by keeping up with self-care. Daily walks, meditation, prayer, therapy, and organizing my space were things I did to set myself up for a successful recovery.

The surgery

The surgery involved fusing the middle joint, or PIP joint, of my affected fingers. I was having this done on both my left pinky and ring finger.

The surgery was a two-step process.

Part 1

The first surgery was in October 2023 under general anesthesia.

The goal of this surgery was to fuse the middle joint. To do this, the surgeon needed to place thin metal rods in the fingers to hold the bones in place.

After the surgery, I was placed in a cast and sling because my whole arm was numb for the first 2 days.

I had a follow-up a few days after the procedure to take X-rays, which continued every 2 weeks thereafter. The X-rays documented how my bones were fusing together, the progress of which would determine when I could have the next surgery.

The good thing was that I didn’t need to rely on narcotic pain medication or Tylenol after the first couple of days. I must admit, it was a bit off-putting to see my fingers all stitched up, bruised, and inflamed like mini sausages when I needed to take the cast off.

The first couple of weeks was a sensitive time. I needed to change the gauze daily and use a shower glove since my hand couldn’t get wet. As someone who likes to do things on their own, needing help was quite frustrating.

Part 2

Based on the progress of my healing, my second surgery was exactly 5 weeks later. This surgery removed the thin metal rods that were aiding the fusing of my bones.

While the first surgery was over 2 hours, this was an hour-long procedure under sedation only. After a few days, I took off my second cast and was free to start occupational therapy soon after.

The recovery

At the time of writing, I’m almost 4 months post-op.

I am done with occupational therapy for now, but I am still doing my exercises. These focus on bending the tip of my finger, the DIP joint, so that this part can become flexible again.

The first couple of weeks were tough as I had to rely on help to do simple daily tasks. But I started to get more excited as I began to heal more. I was able to do things more independently again, and my fingers felt better.

I still have scar tissue and inflammation, which might take many more weeks or months to fully heal.

While many people associate surgery with physical recovery, there is an emotional aspect that often gets overlooked.

I made it a point to jot down one happy moment a day. Looking back, some of my notes consisted of when I showered without any help, drove alone to occupational therapy, or wore my mittens for the first time. These were huge wins for me.

Why I try to avoid the word ‘deformity’

My hands have always been a touchy subject. My RA symptoms were usually quite invisible, but the boutonniere deformities were some of the most visible symptoms since my diagnosis.

It got to the point where I would hide my hands because I was embarrassed, and it’s still something I struggle with from time to time.

With therapy and various mindfulness practices, such as meditation and affirmations, I was able to lean into loving the parts of myself that I deemed unlovable.

Part of loving myself and my hands was realizing that the word “deformity” never sat well with me. It was counterintuitive to prioritize being kinder to myself while calling parts of my body deformities.

Now, instead of referring to them as boutonniere deformities, I simply talk about my fingers. It’s made a world of difference to my mindset and how I consider my body. Sadly, medical terms aren’t always designed with the patient in mind, and they can have a detrimental impact on your mental well-being.

Moving forward and my advice

For anyone who is dealing with a similar situation, my advice is to get an opinion from an orthopedic hand surgeon. It doesn’t hurt to know what your options may be.

Needing surgery doesn’t mean you failed. You may hear that medications nowadays should stop these “deformities” and surgeries from occurring as often. This is not always the case, and that is OK.

Sometimes, what fails people is the broken medical system, lack of awareness of autoimmune arthritis, medications that don’t always work, and financial hardship and insurance setbacks, to name just a few.

Looking back, I am so proud of myself for forging ahead.

I am so excited to get back to writing … wearing rings again … and painting my nails! It’s really the simple things that make the biggest difference.