Recovery from a long spinal fusion (T4-S1), my third!

Written Nov 2024.
122 staples, BTW, removed painfully 21 days later. Surgery was on October 22nd, with 5 days in the hospital, 2 weeks in rehab facility. I came home two weeks early because I worked really hard on PT and OT. Plus I had the unfortunate experience of having two prior fusions, so my home was already prepared for a back surgery with a shower chair and pickers in strategic places. I only needed home health nurse for three visits to change dressing since I live alone.

In 2018 I had an L5-S1 fusion and the surgeon said it's likely you'll be back in 5 years or so. And he was right.

The second fusion was T10 to S1, that was February of this year by a different surgeon. About a month after I came home I had primary junctional failure at T10 after collapse of the fractured vertebrae (see before and after the revision surgery below).

And this most recent fusion was as I said in October with all of the hardware removed and replaced and extended up to T4. Let's just say I pray I don't have failure there. I was put into a cervical collar after surgery to ward off failure at T4 and I have to wear it until my first follow up on December 19th. Then we will see how it goes. No driving for 12 weeks.

At home my only physical therapy is walking. I have a walking pad.

And the final bit of information is pain control -- yipes, it is extremely difficult. I can't tell you how horrible surgery pain of this magnitude is. I have a high pain tolerance and between the pain of the surgical incision and all those muscles sliced, and the discomfort of the cervical collar, I get very little sleep. I can't complain about actual pain medication. I was given adequate coverage while in the hospital and rehab, oxycodone and gabapentin as well as tizanidine. All common prescribed medications.

Because I also have rheumatoid arthritis and neuropathy in my feet up to my calves I'm used to chronic pain (4 out of 10 is a good day for me), but this is another level of misery. I have pain management through a pain clinic and they did a good job handing off the baton to my pain clinic once I was home.

So I'm not quite a month out from surgery, and it's really rough but I am managing to get an hour here or an hour there of sleep. Then I get up and walk. With this collar on you don't really have to worry about violating bending, lifting, twisting... It's really hard to do comfortably.

PROCEDURES PERFORMED

(The most recent fusion, Oct 2024):

1. Posterior spinal fusion, posterior spinal instrumentation, T4 to pelvis. 

2. ICBG bilaterally 

3. Pelvic fixation bilaterally

4. Type 1 posterior column osteotomy T4 to S1 at each level x 13 

5. Allograft

6. Ligament repair T4 to T5 

7. Exploration fusion T11 to S1

8. Removal hardware T11 to S1

Making it past rough times with unrelenting pain, isolation, multiple surgeries

A dark, but realistic meditation I posted on r/ChronicPain (highly recommended sub), when I was in deep suffering from the failed second spinal fusion, and myriad health conditions.

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Basics: 60F, I live alone, and I have had chronic pain from several issues with increasing pain over the years to manage: rheumatoid arthritis, neuropathy in both feet and calves, and I've had 3 back operations (1 discectomy and two fusions, 2018: 360 L5-S1 and Feb this year TLIF T11-S1), and because of a fracture and collapse at T10 a couple of months ago during my recovery, I now face a revision surgery, extending the fusion into the upper thoracic spine because of proximal junctional kyphosis (PJK). Argh.

Dealing with the pain and isolation (or not)

I'm sure many of you on this sub have encountered similar situations and challenges. I read many of your stories to feel less alone about how difficult this journey can be.

The pain is sometimes unmanageable and the medical system does nothing at lightning speed. I don't have a consult for my fourth surgery until July 22nd I don't know how I'm going to make it until then. Because of the relative danger of operating on this area of my spine, I'm being referred to a specialist in this type of surgery and he's in demand.

I'd like to hear from others about the psychological impact of being in so much chronic, acute pain for an extended period of time while waiting and waiting and waiting for diagnosis and consultation and then another surgery with a very long recovery…with an uncertain outcome.

I'm also acutely aware that I'm always initiating conversations with friends and family. No one ever checks in on me -- even knowing the condition I'm in. From my perspective, I imagine if I died no one would even know. I'm not saying no one would care – but it's pretty self-evident folks would get over it and move on.

It's a real, but sorry state of affairs. And it's not that I'm living alone. Plenty of people live alone but people stay in contact with them. And some people have plenty of people and support around them but feel extremely alone anyway.

However, I also think there are other things that have nothing to do with me personally that are responsible for my isolation.

Compassion fatigue. When people talk to me I really have nothing positive to report about my life because it's deteriorating and spiraling out of my control. My health, despite all of the good work that I do to care for myself has resulted in nothing but further disability, deformation, and horrific chronic pain.

The fractured back means I rarely get out and all my energy is just to do simple tasks, buy a few groceries, and just survive. Right now I spend about 80% of my day in bed because the pain is so bad. Driving is particularly difficult because of the location of the fracture in my thoracic spine. The pain feels like my rib cage is in a vise wrapping all the way around me.

So, no one wants to hear about things that they can't do anything about -- they feel helpless and so they just drop out of contact because feel they can't contribute anything helpful.

And the other phenomenon, I think, is that in the recesses of almost everyone's minds is aversion to the terror that this kind of situation could happen to them - declining health, disability, and isolation. So you avoid the thing that scares you.

It's definitely a thing. But being aware of it, and knowing it, doesn't change the outcome on the person who is experiencing it. You are essentially "abandoned" by everyone you know.

Add that on top of just life in general. Everybody has their day-to-day lives that they attend to, often that includes taking care of other relatives or children or work, or enjoying vacations, gathering time with friends and family etc.

And distance really isn't the issue because many people experience what I have because they simply can't participate in so many social events, even if they live nearby because they are too broken or sick to do so and so you stop getting invited, called, etc.

So I'm not sure why people are surprised, with a significant sick, disabled, elderly population, there are many many people who don't feel they matter...

But it's probably time to start talk therapy to make it through this.

It's all gone now...

I gave up. It's all gone now.

After taking ashwagandha for a month to deal with stress and chronic pain as I look forward to a fourth spinal surgery in October, I started seeing my locs drop off at an alarming rate.

I started my locs in 1999, cutting them over the years. They started to thin a few years ago (and I had very thick hair) so watching them disappear slowly, started wearing more hats, and then rapidly over the last month, I decided to cut off the rest. A lot of tears were shed.

Seeing what I was left with (a short natural), my hair was patchy with plenty of bald spots.

The night before last, I just gave up. Because I have PCOS, female pattern baldness was definitely partially responsible, and at 61 I'm probably perimenopausal so what was left was probably doomed anyway.

I buzzed it down to 3 mm.

Yesterday morning, I took a razor and shaved all of it off.

So it's Day One, post-hair.

I'm in mourning, in shock, slowly accepting that I will never have that hair back. It will never be thick again. The question is -- what will grow back. What I did have was different in texture and thickness thsn the hair of my youth. And I don't know how much gray will come in. I had some front and on the sides but I'm not going to color it. Heck maybe I won't even grow it out.

I have plenty of scarves and hats, but not quite enough courage to go out full chrome dome. 

At least my hair will be low maintenance while I am in physical rehab for weeks after my seven-level fusion surgery. 🤷🏼‍♀️

Just leaving my story here; I know others feel the pain...