CT results back - the good news, the bad news about T4-S1 spinal fusion

Some stats for others dealing with long fusions.

62, F, 129.8 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)

MISC: T2D, 5.1 A1C, no insulin needed; rheumatoid arthritis (no meds); neuropathy (moderate in hands, severe from knees down). Labs still stellar.

REHAB: 2 weeks at acute care; pool therapy at 1 year mark for 2 months, land therapy 2 weeks, then home PT + acupuncture. Treadmill 3-4 times a week, resistance bands 2x/week. I obviously can no longer bend it the waist.

After my one-year checkup on my T4-S1 fusion, all was well, even though I had a fall during that rehab period. All was well until maybe January. I started to have upper body pain that was going away for the most part. I still have pretty significant balance issues (feel like Robocop) because of all the hardware, and driving aside from short jaunts in town for errands pretty much wipes me out for the whole day. Same for chores like mopping, lifting laundry, grocery bags, etc. Stuff able-bodied folks take for granted and keep on trucking puts me in bed because of the acute and chronic pain. 

A good day for me is a 4 out of 10 on the pain scale. But I do all of the chores and driving because, well, it's me, myself, and I to do it all. Balance issues probably means I need to use a cane, but I hate it; it gets in the way, so I usually leave it in the car. I'm stubborn. A cane means I really shouldn't walk outside for exercise alone, so that's why I'm relegated to the treadmill to get cardio in.

Note to fellow spine warriors: yes, I use other assistive devices out of necessity, even 18 months out from surgery:

• grabbers, to pick things up off of the floor (I have 5 around the house)
• shower chair: when the pain is bad, it's immeasurably helpful
• sock put-on thing: need it because I can't bend enough.

Since the upper body pain was getting worse since January, included that sensation of my rib cage being squeezed (girdle sensation), it was making it hard to breathe while lying down. I knew something was wrong; I was falling in my home fairly often (at least once a month), and I was dropping things from my hands frequently, suggesting neuropathia and motor issues. So it took months, since the medical system isn't racing to do anything that isn't an emergency.  

I had an MRI, Nerve Conduction Study and lower leg EMG (electromyography) test through a neurologist. BTW, the MRI didn't show anything of note; it appears that it cannot always pick up cervical issues caused by gravity (your head and shoulders) if you are lying down. They do have upright MRIs; I did have one once. They are good for folks who are claustrophobic; I'm not, I fall asleep during them. 

Those NCS/CMG tests confirmed my existing neuropathy and nerve damage from prior surgeries, but it also confirmed sensory delays in my hands (4.48 ms and 3.59 ms) - why I drop things. My pain doctor set up the CT scan, and that occurred in May.

So the takeaway from my May 7, 2026 CT scan of my thoracic area...

🧠 The biggest takeaway first

✅ GOOD NEWS:

The CT did NOT show:

• A new fracture
• Hardware failure
• Broken rods or screws
• Severe instability
• Major spinal canal compression

So that's the good news.

⚠️ The most important finding (The BAD NEWS)

“T1-T2 mild central canal stenosis relating to annular bulging”

🧠 What is T1-T2?

This is the junction between your lower neck and upper thoracic spine VERY close to the top of your fusion

Remember:

• your fusion begins around T4/T5
• so T1-T2 is part of the “transition zone”
• That area is under extra stress because the fused spine below it cannot absorb motion normally.

T1-T2 Mild Central Canal Stenosis: At the T1-T2 level (the base of your neck/top of your shoulders), the report notes "mild central canal stenosis". This means the main tunnel that holds your spinal cord is slightly narrowed.

The Cause: This narrowing is caused by "diffuse annular bulging," which is a disc that is slightly flattened and pushing backward toward the spinal cord.  

The Connection: This is likely a major contributor to the "girdle sensation" and the pain you feel between your shoulder blades. When you lift groceries or drive, the muscles and discs in this transition area are under extra stress, which can temporarily increase the pressure on the cord.  

🚗 Why driving hurts so much now (confirmed mechanically)
This CT supports the idea that: the junction above your fusion is overloaded
Driving causes:

• vibration
• static posture
• shoulder/upper back tension

👉 which increases stress at T1-T2/T4 transition areas

X-Ray from Oct, 2025.

You are experiencing:

“JUNCTIONAL OVERLOAD SYNDROME” (aka Adjacent Segment Disease). Junctional overload syndrome, specifically proximal junctional kyphosis (PJK) or failure (PJF) at the T1 level, is a known complication of long spinal fusions (such as T4 to S1) where the segment immediately above the hardware experiences accelerated degeneration, abnormal stress, and structural breakdown. This condition, often termed Adjacent Segment Disease (ASD) or Syndrome, occurs because the rigid, fused spine (T4-S1) forces the non-fused, upper thoracic levels (T1, T2) to absorb excessive biomechanical stress.

---

ANYWAY...so that's the long version of what the CT said. 

Short answer is the CT found problems at T1 that are from the constant pressure on my remaining spine where there's no hardware. And T1 is taking the punishment. It may or may not fracture (as my spine did after the Feb 2024 T10-S1 fusion that failed), but it's at risk, and the spinal cord is already getting triggered there. 

Options: No surgery required yet, thankfully, but that doesn't help with this acute and chronic pain that is truly disabling if I cannot drive far without laying me out, or do activities without ending up spending 70% of the time in bed.

👉What your surgeon will probably focus on next:

Likely:

• conservative management first
• activity modification
• pain control
• monitoring progression

Possibly:

• physical therapy tailored to fusion mechanics
• injections
• bracing
• posture/driving modifications

⚠️ What to watch carefully over time. Tell your surgeon promptly if you develop:

• worsening balance
• worsening hand weakness
• increasing gait instability
• bowel/bladder changes
• rapidly worsening thoracic pain

That's where things stand for now, folks. It really put a damper on my plans to travel to the East Coast due to many things. Traveling alone in this condition is unwise, given my balance issues and degenerating spine. I can hopefully manage the pain and figure out the balance issues so I can do more than sit here and rot for my 63rd birthday in July. Sigh.

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!