Familiar, not-so-fun developments, 18 months out from T4-S1 fusion surgery

62, F, 129.2 lb, 5'3". I've had three fusions: 

• L5-S1 - (2018); left with left leg nerve damage. 
• T11-S1 (Feb 2024, then PJK failure) 
• T4-S1 (revision, Oct 2024)
  

The good news - I've added a few pounds of muscle back, thank goodness, from consistent treadmill work despite neuropathic pain in my feet making it challenging, and resistance band training for my lower and upper body. Otherwise weight steady, A1C 5.1 (normal), all my labs excellent.

Not-so-good news - persistent, oftentimes acute pain across the shoulder blades, particularly after driving. I expect soreness, after all, that's the point where the hardware ends and my natural deteriorating spine takes over. 

I started to have neck pain as well, and some worrisome consistent numbness in my hands, and they were often cold, and I started to drop things. Like all the time, silverware, pens, always fine motor kinds of issues.  Those were all new to me, and my neuropathy/nerve damage overall I knew wouldn't improve, but the new issues were troubling. Given our medical system (I'm disabled, and therefore on Medicare), getting non-urgent matters diagnosed and addressed takes forever. But I've at least got good primary care that listen to me, since I do plenty of research and come prepared to appointments to ask questions about evidence-based stuff. Anyhoo, my thought was to get to a neurologist and have Nerve Conduction Study (NCS) and lower leg EMG (electromyography) tests. Those detect and measure nerve damage, muscle diseases, and nerve compression.

I already had existing damage in my left leg that causes it to collapse unexpectedly when going up or down stairs. It's not trustworthy, lol.

What the tests found, all expected:
Local compression (peroneal nerve)

Broader nerve dysfunction (neuropathy)

Likely spine-related nerve involvement (L5)

What I didn't expect was slow signals in my arms, which would suggest some nerve issues in the cervical spine (neck). All the MRI showed was arthritis there.

So as of May 07, 2026, I await CT results on the thoracic area (T4), where I am at risk of fracture.  What is most alarming, pain wise, is it feels very similar to the way it felt at T10 after surgery #2, when it fractured. 

The other pain I am now experiencing on almost a daily basis that had gone away after about 7 months of healing of this last surgery - the feeling that my ribs are being squeezed, like I am in a vise. Especially when lying down. It makes coughing almost impossible without severe pain, and breathing very labored while lying down. At least it is a thing.  It's called Girdle Pain.

"Girdle pain" associated with a T4 fusion refers to a distinct set of symptoms known as T4 Syndrome, which often presents as a tight, "girdle-like" band of pain around the chest, along with upper back pain and arm symptoms.

Connecting the "Girdle" Pain to the Neck Strain

• The muscle strain you feel behind your ear (often involving the sternocleidomastoid or splenius capitis muscles) is likely a direct result of your body trying to compensate for the "girdle" sensation at T4.
• The Compensation Chain: When the T4 level is stressed (the "band" feeling), your body naturally shifts your head forward to find a position of comfort. This "forward head posture" puts immense strain on the small muscles at the base of your skull and behind your ears.
• The "Tug of War": Your T4-pelvis fusion is a heavy, rigid anchor. Your neck is currently the only part of your upper body trying to provide mobility. This creates a "tug of war" at the C4-T4 junction, causing those muscles behind your ear to stay in a state of chronic contraction (muscle guarding).
• Feeling squeezed when lying down can occur because the muscles between your ribs (intercostals) aren't expanding fully due to that nerve irritation, making it feel like your breathing is restricted even if your lungs are healthy.

In any case, I need to find out if the T3 is going south on me. I really cannot imagine going through another extension of my fusion. All that pain and agony and recovery alone again. But if it's going to go, it's not like I can stop gravity from collapsing and causing Proximal Junctional Kyphosis (PJK) there.

Let's just say, I don't want to think about it right now. I've lost essentially 2 years of my life in pre-surgery or post-surgery extreme pain and increasing disability, even when the surgery technically was "successful." 

This past weekend it was the first fair/outdoor concert I've been to in many months. I had a good time, but oh lord, all the walking, the hard bench seating, and the hour-long drive each way destroyed me. I was in bed for almost two days, barely able to make it to the kitchen to make something to eat. It was that bad, but I at least, for a short time, felt a part of society instead of a shut in. While it's nice to gab and socialize online, it's not the same as LIVING in the real world.

I just wish I didn't pay such an awful physical price to do things most folks take for granted.

Before my spine took a dive, I took my able bodied status for granted too. Use it, because you never know when you're going to lose it!