I had long fusion surgery on 3/5/26. The fusion is bolted into my pelvic bone and goes up to T8. I can hear my fusion when I walk in a quiet environment. It sounds like it is moving with every step. Can anyone else relate to what I’m talking about?
Buckle in for a long read, but I hope it's helpful for others...
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)
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 at the waist.
ONE YEAR CHECKUP (Oct 2025)
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.
18 MONTHS OUT
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.
NCS/EMG TESTING
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.
GETTING A CT AND WHY
On May 07, 2026, I had a CT of 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.
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).
CT RESULTS
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”
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
You are experiencing:
“JUNCTIONAL OVERLOAD SYNDROME” (aka Adjacent Segment Disease)
***
WHAT NEXT?!
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
My pain clinic suggested an epidural injection at T1. I don't want steroids because of the impact on my blood glucose and other side effects. My doctor said that it can bring some relief but of course this is only temporary. My spine will continue to deteriorate; this is just about pain management.
I haven't spoken to my surgeons office yet so it's likely that I'll have to follow up with a visit with them.
***
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."
I’m a tummy sleeper. Have been for years. But last week I had my operations and I miss being able to flop on my stomach and sleep. I can only sleep on my one side in a very specific way and even that’s uncomfortable
I was told that I could grow up to 2-4 inches because of my severe curves (100° thoracic and 80° lumbar) and I ended up growing 3 inches and 3 quarters with a curvature of below 10° now
Thinking about all my long spinal fusion friends. It makes me feel SO much better to see others who experience the same issues and that I’m actually NOT crazy and dramatic! (Imagine that)
Please enjoy my gorgeous screws 🎉🎉
Anyone post long fusion wish to share their workout, sports, activities please?
What did you do before? Can you still after? Or no? Maybe in a more limited basis?
I have to confess my spouse took up BMX racing and I am dying to give it a shot - not even saying competitive racing necessarily but just some laps around the track? Like I said am dying to try but too afraid without some guidance and others experiences. I will see my doc next week to ask….
Personally I’m a t1-si fused 40 yr old female. I am due to have another series of surgeries in the next month so maybe I can get a chance to try before that…
Best of everything to everyone here!
I’m supposed to have my surgery in August, and i’m really scared cause all i’ve been hearing is the excruciating pain some people have received after the surgery😢
I haven’t really felt any pain since I was diagnosed with scoliosis (4-5 years ago) and the last time I got an x-ray, my doctor said I have a 50 deg curve 💔