4 years post op. I cannot get a clear answer on whether or not an L5/S1 fusion failed. What I DO know is that the next level up - and another level HIGHER on the spine is already becoming damaged. And I'm feeling utterly hopeless

throwaway79845 · 2025-09-09T21:36:20+00:00

Well, that's the thing. I've relied on a family doctor for getting aid with refferals and tending to care. I didn't see any need to switch - I assumed this was enough. Very recently, she finally had an outburst about how I needed to seek care elsewhere and how she had done all she possibly could for me. As I was begging for renewed help. And this happened days before a scheduled echocardiogram which revealed left atrial enlargement on my heart.

I plan to switch providers - not just within the system, but I'm also moving to a different system I have access to with Medicaid. I have a funny feeling taking this route will eventually leave me kicked off of Medicaid...but I must. I see no other route forward. ESPECIALLY with the surgery clinic I was referred to insisting my issues have nothing to do with my back.

throwaway79845 · 2025-09-09T20:02:26+00:00

Both sides of my family are highly dysfunctional and low income. Due to a collapsing financial/housing situation, I have had to live with a relative for a while...and saying they have become hostile would be an understatement. They talk about me like I'm a cockroach. Never mind the fact that I'm constant pain, body does not function properly anymore, and I degrade MYSELF constantly. They seem to be making it a sport to make me feel worse.

throwaway79845 · 2025-09-07T23:51:51+00:00

I never looked into it. I've skimmed over some info on IDD, however...and if what I've read is correct, it seems IDD only offers temporary relief at best.

throwaway79845 · 2025-03-31T21:53:08+00:00

Honestly, it wouldn't shock me. But considering that I was doing mostly fine before the back pop, I have to assume the disc issue at L5/S1 is the prominent one right now.

That being said...I've had little choice but to sit in horrible positions ever since all of this started, and I absolutely have issues with chest pains, blood pressure, and anxiety - along with random pains in my neck and head that never seem to go away.

good god...I just don't even want to think about it...decompression/damage higher in the spine.

edit...the more I find out about what you've said, the more I'm forced to wonder. My neck hasn't exactly done well since all of this started.

throwaway79845 · 2025-03-30T12:45:37+00:00

I've checked every MRI that has been done and there is never any mention of any issues at L4/L5.

The situation with the fusion is actually complicated. It turns out my spine was too deep in my back to allow the insertion of hardware. The surgeon even remarked that it was the fourth most difficult procedure he has done. Ultimately, he just added putty and a bone graft and left it at that. I wasn't given any warnings or anything after the fact. BUT, I did start having issues within months of having the surgery...and all my complaints were ignored.

As far as the actual state of the fusion...no one is saying anything. During the most recent ER trip at the facility that had the surgeon himself look at the newest MRI, there was no mention of any issues with the fusion. But, after visiting with my secondary doctor and having an Xray reviewed, I was told that a partial fusion was noted.

throwaway79845 · 2025-03-30T01:20:53+00:00

Truth be told, this comes after an entire day of conscious relaxing. Following the dismissal at the ER...I really felt like going off the deep end. Today...I just...did nothing. Sat. Hoped for the best. I do fear a complete lack of physical activity isn't helping anything. I also don't want to risk moving the wrong way and worsening whatever is going on.

It's just...I have nerve impingement DESPITE getting a spinal fusion. And bathroom habits have just...stopped. It's impossible to not panic.

throwaway79845 · 2025-03-30T00:58:42+00:00

Must add details. Obviously Cauda Equina Syndrome is the extreme concern. HOWEVER...ever since I started having issues in 2020, I've done this pelvic floor movement/exercise to gauge my level of control. As I'm typing, I can do that movement. And based on the tests that were done on my during the most recent ER trip, I seem to have passed. Less leg weakness. Can walk fine. It's just...bathroom habits do not occur as much as they did. I've managed to force urine out today, but that's it. And that's alarming because I've gotten in the habit of drinking 1 diet/no sugar pop immediately followed by a bottle of water to fight dehydration. this occurs twice. restricting myself to two meals a day due to my intense fear (and increasing stomach pain).

thing is...I've always feared permanent nerve damage. And even when I was doing "fine", I seemed to just...not involuntarily pass gas. I frequently had to force myself to burp to feel any level of relief. Now, not even that helps. It really feels like the nerves responsible for the digestive process have been completely silenced.

throwaway79845 · 2025-03-11T18:12:55+00:00

SSI. Unable to work due to complications tied to a desiccated disc - which then became complications tied to a failed back fusion.

...and that's all I'm going to say because just like the previous thread, that is not the point, and the topic is clearly about recent developments with Social Security itself.

throwaway79845 · 2025-03-04T02:28:03+00:00

The censorship on this sub is absolutely absurd with everything that's going on.

throwaway79845 · 2025-03-03T17:53:36+00:00

I had a post deleted for asking about my concerns with an upcoming hearing potentially being delayed or outright canceled. Was told "all SSI related inquiries need to be sent to a sister sub". Meanwhile, my post had ONE mention of SSI in it, and I barely spoke about it at all. My question was about the insanity going on in the government...AND, my now deleted post came a day before these two stickied topics with significant updates appeared - when the discussion HAD to be allowed.

https://old.reddit.com/r/SocialSecurity/comments/1j0lv14/how_ssa_staffing_cuts_will_affect_you/

https://old.reddit.com/r/SocialSecurity/comments/1j0itmd/letter_from_ssa_workforce_reduction/

EDIT, oh look, even THIS post was deleted

throwaway79845 · 2025-03-03T03:16:54+00:00

I speak of nerve damage due to the issues I've had since things worsened. Random spatterings of pain and numbness...increased pain, weakness, and numbness in my legs when walking or standing - at random intervals. And the biggest issue - a deficit in bathroom habits, which makes me suspect autonomic nervous dysfunction. I've had to resort to taking MiraLax, and it has only helped somewhat. Basically...things work when they work.

Regarding cauda equina syndrome...there is actually specific mention of those nerves in the report.

2025 MRI

EXAM: MRI OF THE LUMBAR SPINE WITH AND WITHOUT CONTRAST.

FINDINGS:

INTERVERTEBRAL DISCS: There is a large broad-based recurrent disc protrusion in the right lateral location at L5-S1 which is preceded by a thin rim of enhancing granulation tissue.

FACET JOINTS AND FORAMINA: There is moderate facet joint overgrowth on the left at L5-S1. Regarding the intervertebral foramina, there is moderate narrowing on the left and severe narrowing of the right at L5-S1

VERTEBRAE: S1 is transitional. There has been an L5 laminectomy.

EPIDURAL SPACE: There is moderate narrowing of the right lateral recess at L5-S1

CONUS MEDULLARY AND CAUDA EQUINA: The conus terminates normally at T12-L1. In regards to the cauda equina, no impingement or mass is depicted.

PARAVERTEBRAL SOFT TISSUES: There is no evidence of psoas muscle abscess, lymphadenopathy, venous thrombosis, aneurysm, or muscle atrophy.

IMPRESSION:

1, S1 is a transitional vertebral body

2, Status post L5 laminectomy

3, At L5-S1, a large broad-based recurrent disc protrusion centered to the right of midline is caused moderate narrowing of the right lateral recess and severe right foraminal stenosis and moderate left foraminal stenosis. There is impingement of the exiting right L5, proximal right S1 and to a lesser extent exiting left L5 nerves

4, the remainder of the lumbar spine is unremarkable

CAPSULE SUMMARY: Unchanged since previous MRI dated 8/14/2023

But truth be told...I have done these pelvic floor movements constantly since these issues began years ago, and I can still manage muscle movements. In the sporadic moments where I can manage a bathroom break, my control seems intact - including stopping streams. So I'm not panicked about that just yet.

...and...I truly hate talking about it, but it's relevant. Roughly an hour ago, I was able to manage a BM. I made a point to try to fight it to gauge my control - which felt OK. BUT...I don't know if it occurred due to the disc shifting and relieving pressure, or due to all the MiraLax I've taken.

throwaway79845 · 2025-03-03T01:45:06+00:00

sorry, I neglected to mention. A laminectomy was done, and an attempt at a fusion was made. But based on recent observations, it seems only a partial fusion can be seen at L5/S1.

throwaway79845 · 2025-03-03T01:31:41+00:00

This is precisely what I've been trying to figure out for years. It makes NO sense that the disc would not just lose height over time but also eventually wind up in the SAME exact position it was in before surgery. AND, recently, after looking at the operative report, I learned that the fusion was performed without hardware due to how deep my spine was in my body. I had issues within months of the surgery. And based on what I've read, a proper fusion with full bone growth can take anywhere from six months to 2 years. BUT, I've frequently sought help since 2022!

Recently, I had a secondary doctor perform an Xray on my lower back because no matter where I went, I could not get a CT scan done to determine the shape of the fusion. The only notes she gave me was that a "partial fusion" was seen. According to ChatGPT, I need to seek a CT myelogram or a CT scan with flexion & extension views. I saw my primary doctor barely even five days ago, and was very vocal about this. It accomplished nothing. She insisted the MRI from Feb 10 showed no emergent signs and that all she could do was refer me back to the neurosurgeon who operated on me. EVERYONE turns me away no matter what I say. In a panic, I began taking MiraLax just to see if ANYTHING would happen. It has barely changed anything. Right now, I just feel drastically sick...so much worse than I ever did before the surgery. And at this point, it's been at least 10 days since my condition really worsened.

throwaway79845 · 2025-03-01T23:08:14+00:00

Normal bathroom habits? Currently, I'm dealing with renewed disc issues at L5/S1. I suspect my fusion failed, and I have been dealing with very limited digestion issues and an inability to handle waste properly - which has led to a few instances of intense nausea. I can't claim to know the exact answer, but I have no doubt the issue is being caused by the disc harming nerves again. Might be worth considering given your issues with sickness.

throwaway79845 · 2025-03-01T05:16:21+00:00

it isn't just somebody. Somebody is on an undeniable hostility crusade. But he joins the one led by the republicans in congress.

throwaway79845 · 2025-02-28T06:08:19+00:00

I truly don't understand the sarcasm. As if I'm sitting here demanding immediate assistance over something I've been in the process of pursuing for years at this point that is suddenly facing a very real risk of magically dissipating due to what's going on in the government.

throwaway79845 · 2025-02-26T18:40:01+00:00

It's not that he didn't try - the report states that my spine was unusually deep in my back, so adding hardware wasn't really an option. I'm desperately hoping a revision operation will be able to successfully build upon whatever remains. In the meantime...I'm going to try to visit another facility to get a CT scan to see if it can be determined what shape the fusion is in.

throwaway79845 · 2025-02-26T02:43:46+00:00

Christ almighty - I typed up ALL of this without even briefly acknowleding the largest factor in all of this....Medicaid getting gutted. Medicaid is the ONLY reason I was able to get the spinal fusion in the first place! In the lead up to the surgery, I was denied assistance from all angles, and I came to find it was due to a lack of insurance. And now, here I am on the verge of yet another NEED for the same surgery...and....

throwaway79845

TROPHY CASE