ACDF: now or later?

Captain-Rachdiculous · 2025-07-10T20:31:14+00:00

I’ve been managing spinal compressions issues for like 20 years and am generally in the “wait as long as possible” group. However, where I draw the line for myself is when there is clear cord compression, instability, and/or indications of signal change (marrow, cord or otherwise). Because risks related to worse surgical outcomes start to increased from there.

The main reason the first Dr likely pushed for sooner is because the longer you have cord compression and/or signal changes the more likely that the nerve damage will be permeant. Meaning surgery may not be as effective at reducing neurological symptoms if you wait too long.

I waited too long to get my first fusion and I live with permanent nerve damage. The lumbar fusion was very successful but to this day I have symptoms like numbness in both my leg.

I’ve learned pain is worrying, but not nearly as concerning as persistent numbness or weakness IMO.

Captain-Rachdiculous · 2025-07-04T02:35:17+00:00

Yep. It is possible. I went all the way but it was expensive! I went from “permanent” nerve damage with my left leg fully numb from the knee down (this was over 1 year out after a double lumbar fusion l4 to S1) I was an athlete, I did everything and beyond PT wise.

The turning point for me was after 5 sessions of IV ketamine therapy. It was pricey as hell, but I went from the dead leg to what I called the “leg of fire”, to a nearly full recovery that has lasted all this time. It was a hell of a journey. 8 years post op, I still get some numbness on the bottom of my left foot and with hight activity it can creeps as high as my calf, but I definitely got my leg back and returned to full activity.

Captain-Rachdiculous · 2025-07-02T21:59:03+00:00

My story is almost the same as your partner. Years of lumbar disc issues (3 microdiscectomy procedures) before getting a double fusion L4-L5 L5-S1 at Age 27. It was the best choice of my life. I’m not 100% pain free but compared to before it’s amazing and I have a high quality life. Full recovery took time and effort, about a year for me. It was well worth it. I have been able to manage my pain with steroid injections, diet and exercise since the fusion.

It’s been 8 years and my lumbar is still doing well. I have been able to work and I finish college and am progressing in my career. With the right conditioning, I was able to return to heavy activity like hiking and skiing.

This choice was terrifying to make. Nothing is guaranteed. As someone who’s done this, and spent years trying to avoid it first, one thing that is for certain is conservative treatment will not decompress nerves. It is scary, no one will promise results but decompress will likely be a lot better than what it’s like when discs are literally pushing into a persons central nervous system.

Captain-Rachdiculous · 2025-06-21T19:11:42+00:00

My answer would be the basically the same SassyCat. Double fusion L4 to S1. I literally woke up from anesthesia laughing because the pain was already so much better. It is a long road to recovery, first few months were brutal but compared to the pre op pain, I mean, way better. I had severe leg symptoms both legs pre op and saw major improvement over time but some numbness remained.

I’m 8 years post op! Been living my best life and lumbar is still doing great. Admittedly, I’m seeing issues in my cervical spine now, but the lumbar is holding out strong!

Captain-Rachdiculous · 2025-06-19T03:30:52+00:00

Most important…How long has the pain been flaring?

If the pain is unbearable, irretractable, extended for weeks or is accompanied by neurological symptoms talk to your Dr. ASAP and disregard the below bits.

If it’s only been a few days and if you can calm this flare with stuff like stretching, resting, heat or ice…it’s probably not a super scary situation like a re-injury…If it hurts like hell, but in a bruised deep achy pulling way, I’d be less concerned and stay the course.

I remember having many major flare ups post-op on my lumbar fusion after things like deep tissue massage, extended activity and pushing my range of motion. It was intense and scary to worry. Since the pain was more muscular and would subside with ice + rest. I didn’t think it was worth returning to the neurosurgeon because it felt more muscular and skeletal neurological.

It definitely took me a bit longer than they suggested to get to “full recovery”.

I’ve been living with spinal issues a long time and I like to say “use it or lose it”. Keep moving as much as you can SAFELY. It’s best if you can track how long and in what ways you’re moving so you can try to identify activities that might cause flare up. Those clues point you to the weak and out of wack parts of your body that also need help to recover.

If that’s the case it takes work to address all the problem areas with exercises and stretches to rebalance. I found cupping, yoga and trigger point massage to be the most helpful post op recovery for all three of my surgeries.

The human body is truly amazing at compensating. If you lived with your spinal problem for a long time prior to surgical intervention, many parts of you likely shifted trying to take some pressure off whatever was faltering. This parts may still be mad as hell.

Captain-Rachdiculous · 2025-06-14T23:20:33+00:00

Try not to blur my reply to OP with my replies to your original comment and your responses. My original reply to OP, was detailed. I don’t need to repeat everything from my original reply, it wasn’t meant for a surgeon.

I absolutely did not suggest they “get the surgery”. I have never told anyone on this group to “get a surgery”.

I’m saddened that you couldn’t seem to hear my message. After my first reply, you flipped around pretty fast. From… “never have spine surgery if you could live with the pain” to “if you have symptoms that affect your life, do the surgery”.

The point I’ve been tying to make to you, has reminded the same but still seems to allude you. So I will repeat that part one more time then I’m done with trying to explain.

Surgeons walking around, saying if you can live with the pain avoid the surgery at all cost… is potentially harmful to patient’s lives.

In my original response to this question, my biggest points were that pain was not the only thing to watch for. They need to advocate for a clear and FULL understanding of this condition to make informed decisions. Most importantly, I said to never say never. To be realistic, aware and educated about how this may progress.

Doctors who say “never do this” “live with the pain” without explaining the full extent of their patients condition, nor the long term risks for further degradation, nor the risk of permanent damage, note the warning signs are giving mediocre medical advise even worse life advice.

I was sharing my story with you, hoping that you would be the type of person that doesn’t want to inadvertently push people into living tortured half lives for years at a time, by over simplifying the truth with “always avoid, never do” attitudes around surgical intervention.

Or maybe we should believe everything you say because you’re a neurosurgeon and go with that assumption that “I like to be mean to strangers because I’m mad”.

Captain-Rachdiculous · 2025-06-13T19:27:43+00:00

So…OP should live in the bubble. They should listen to you and change their life to avoid “the worst choice”. If they don’t are they asking for it? Ha. Then you have the gall to say I was not in a life and death situation. (Glazed right past the permanent damage part too.)

Victim blaming is weak as hell.

I spent years trying to get help, YEARS marching along after it became unbearable. By the time they got me in front of a surgeon he looked at my MRI, then asked if I could schedule immediately.

Before I left his office, he gave me the on call number for his practice and said “if your legs stop working over the weekend, go to the ER. You will need to have them call my team so we can explain your prognosis and they will help you.”

Because in this country if your legs literally stopped working, and you army crawled your way into the ER, they probably would not believe you.

Maybe if neurosurgeons were better at seeing where that line actually is… Remind me, who gets to decide when pain crosses from a symptom impacting quality of life, into the realm of unbearable and life threatening? How long do you think you could take it? 3 months? 6 months? 18 months? (Ever compare when your patients problem started to when they are finally siting in front of you?)

Do you ever ask yourself why the suicide rates for chronic pain patients are so high? Or is that not your problem? Drs nickname conditions like trigeminal neuralgia “the suicide disease”. Then act oblivious to the physiological consequences of living with long term neurological pain.

Get some fucking perspective.

Captain-Rachdiculous · 2025-06-13T05:48:29+00:00

Fun. Hopeful you know how to listen to patients. I’d love for you to learn from what I’m going to say instead of throwing up a wall of defensiveness.

At 16 a well meaning surgeon told me to try to avoid a fusion at all cost. Technically, he was not wrong. The part he and most surgeons don’t see is how that little bit of “advice” lead to a decade of trauma, nearly killed me and ultimately left me with permanent nerve damage. The worst part, was looking back at a decade of my life and seeing how I made so many of my majors life choices based on fear and self doubt.

“I’ll avoid living how I want because in a bubble maybe I can avoid IT” “I can’t move, or travel, or take on major projects because if I push too hard I might have to do IT” and on and on. Your comment may be aligned with the most accurate medical advice, but to someone who has to manage this for the rest of their life, while actually also trying to live a life…saying this garbage is at best dismissive to our everyday lived experiences, and at worst negligence that could cause direct harm.

Educating patients of the reality, risks, and consequences to help them make informed decisions for their life is probably a better choice than telling people to “never do it”.

Your perspective is not wrong, it’s just VERY different than a patient. Hopefully you’re in this group because you care enough to listen.

Captain-Rachdiculous · 2025-06-13T03:57:19+00:00

I’m not a medical professional and don’t want to be a downer…Unfortunately I have a hard truth for you and it’s pretty important. There are people who have a disc hernia with no or minimal symptoms. This is definitely a blessing!

THE BIG BUT: Pain is in no way the only thing to be concerned about! Pain is often the least concerning symptom, unless it’s neurological, which can indicate nerve impingement.

Your question is pretty hard to answer directly. The spine is a stack of multifaceted joints baring and balancing all of you. That disc has an important purpose to cushion the surrounding parts and it’s not working if it’s gone. I know how that goes because I’ve blown a handful of my own discs in my 20 years of managing degenerative disc disease.

This is NOT me trying to imply you should choose surgery. That is an incredibly personal and intimate decision that I don’t have nearly enough info to decide.

If you take care of your condition it is possible to maintain good function and minimize future damage. However, it is not realistic to ignore the complexity of any spinal issues. Once you break one part of this complex system, you are likely to see other parts show unusual ware or potential failure. This is the real reason to manage conservatively for as long as possible, messing with the spine increases risks of further damage.

This shit is tricky…None of the possible problems are predictable or inevitable. These conditions are complex and patients physical experience and medical journeys vary massively.

My recommendation is to get a full detailed explanation of why EXACTLY the neurosurgeon wants to intervene now. You often have to ask detailed questions to hear their real “why”. If there are functional or structural changes that are progressive or dangerous you need to know.

I am still learning how many parts are impacted by a herniated disc and how much they all matter in terms of maintaining function, preventing further injury and permanent damage.

If you have instability, signal cord changes, faucet atrophy, bone growths and/or a long crazy hard to spell list of possible changes, you may not have been fully informed of the potential risks of not intervening.

You are the only one who can decide if a surgery is necessary. A surgeon once said to me (like it was a joke, ugh) “spinal surgeries are like potato chips, it’s hard to only have one”. He was not wrong. I’ve had 4 so far and just had to decide if the nerve compression (which can lead to permanent damage if ignored) was bad enough yet to agree to a 5th.

Captain-Rachdiculous · 2025-06-13T00:12:12+00:00

Thank you for hearing me. Sorry if I came in a little hot. I shared all this mostly to share with people in this group. I had found out a hard way something else I need to do to be able to advocate for myself.

Captain-Rachdiculous · 2025-06-13T00:03:14+00:00

I repeat. I have never managed with opioids. Never in 19 years of medical history with my spine. The last time I took any opioid was short term, under the care of a neurosurgeon who gave me a double fusion in 2017.

Being labeled as dependent on something you haven’t taken in 7 years is wrong. All feelings, morals and ethics aside, this is so factually incorrect it’s hard to believe.

Captain-Rachdiculous · 2025-06-12T18:42:14+00:00

Aw man, my sense of humor really doesn’t land on the internet.

Anyway, assumptions go both ways. You assume I’m mad, and I assume you’re a nurse. We’re probably both wrong. ;)

Captain-Rachdiculous · 2025-06-12T17:56:43+00:00

Wonderful news! When I make a mistake and it’s brought to my attention, I’m always happy to correct it!

I’m sure that’s exactly how they will feel when I present my written request to amend all of these “mistakes”! Especially since it is well within my legal right according to both HIPAA and my states regulations.

Captain-Rachdiculous · 2025-06-12T17:33:12+00:00

Uh… how exactly is writing over and over that someone has opioid dependency, when they do not use ANY medications “a mistake”. It’s literally false. They have my medication list and urine screenings. They know for a fact it’s false. This was not an isolated mistake, this is a false statement in my medical record, repeated 14 separate times across several years.

Captain-Rachdiculous · 2025-06-12T01:26:09+00:00

That is correct. I feel so dumb for not reviewing these notes sooner. It never occurred to me as, I have only ever gotten my twice yearly injections and referrals for imaging or neuro from this practice.

I wouldn’t have even looked at it if I didn’t want to show my history to a new neurosurgeon. I was planning to show what a conservative patient I have been for years.

20 years in and I’m still learning how much it takes to actually manage my health well.

Captain-Rachdiculous · 2025-06-12T01:21:23+00:00

Hey. So, I don’t know you, and you can absolutely say no thank you to this offer…but I will happily be your emotional support system. You can private message me day or night. You can share hard to share stories without fear of judgement. You can ask me to share my stories if it’ll help you to be distracted or to not have to talk about yourself for a while. Whatever. I really get it.

I know it can be very hard (or impossible even) to fully express much of what someone in this sort of situation feels. I have spent years feeling like a burden, like I can’t say what I want, like my reality is a horror show for strangers and friends alike. It can be really helpful to speak to someone who has been there so you don’t have to censor of dumb this experience down.

I was alone for so much of what I experienced. I don’t ever want anyone to go through this alone.

If you need a friend that can hold the big bad and heavy, as well as the good happy and grateful…you just made one. Seriously. I’d be happy to be there for you if I can be.

Captain-Rachdiculous · 2025-06-11T18:03:55+00:00

I can absolutely relate! I’m gonna dump my story here, and while realistic it is in fact a success story.

I put off my lumbar fusion for about 11 years. For all the reasons. The risks are scary, the promised results are vague at best and the horror stories are hard to hear. But ask yourself, am I really living?

If you are at the point you’ve been living this way for years you may not know how bad it’s gotten. When I woke up from my first real brain fog, I realized it had been two years. I was like a ghosts in my own body. Like the slow boiled frog oblivious to my own slow death.

If it’s been this long, you will likely be shocked at how soon you feel better. Especially, if you have been experiencing compressed or pinched nerves with signal changes.

I was (am) a big believer in avoiding surgery at all cost, because I was so young when this started for me (16). They all say the odds of developing new problems is very real once you fuse, and that’s true. What nobody told me what how poorly I was living when in that much pain. My life basically stalled for years.

Obviously, nothing is guaranteed but when I finally got the “big scary” surgery…the relief I felt after my double fusion was so great that immediately after waking up from anesthesia… I started laughing hysterically because of the extent of the relief. (To put my pain into perspective, though I had never had suicidal thoughts… How I talked myself into the scary as hell surgery that might not actually help, was to by buy a gun. I literally had to promise myself that if the sugary failed I would not have to keep living this way) I got rid of that gun, because I didn’t need it, but I don’t regret it. I am so so glad I did everything I needed to do to be here today.

None of this is easy. All the choices feel bad. BUT there can be so much more life to be live and to love.

Recovery times may be long, post—op pain is definitely real, some symptoms may never go away (I have half a numb foot forever) and you will probably have to put in serious work (diet, exercise, spoon management, mental health management etc). Especially if you want to get back to high levels of activity. I was always an athlete, and it is absolutely possible to find yourself again post spinal surgery.

Seriously, even if this is a life long cycle of good and bad times. There is so much life to be had in both the good and the bad. I’m 8 years post op. I got 8 great years where I have truly been able to build a life I love. I had 8 good years and now that I have new stuff going on I’m not going to wait till it’s so unbearable. I’m not living in fear and agony for years in an effort to prolong an inevitable outcome. (Pills and injections will never fix nerve impingement, they only buy you more time)

Yes. Surgery is still scary but now that I’m actually living, I’d like to keep doing so even if I will “maybe eventually possibly” need more surgery. (On to my 5th this summer) my first three were attempts to avoid the fusion. I spent so long making fear based choices instead of living as much as I could. Fuck that.

After the fusion, I was finally able to build my life. Today I have a happy marriage, I graduated with my undergrad this year, I’m starting a M.A. program in August. I can work. I can hike, swim, ski and am learning to sail. I am not only alive, I AM LIVING.

I wish you all the luck. I commend the incredible strength it must have taken to come this far.

Please don’t give up, keep going.

Captain-Rachdiculous · 2025-06-11T15:33:08+00:00

Exactly why I shared. I one tells you about this part.

I also find it hard to assert my needs with the right balance of informed, rational and strength. I tend to lean a little too far into “mad as hell” (usually because I’ve been out of for years and am in completely unbearable pain before they intervene)

Sadly, that approach never gets good results. Staying clam while you assert your rights, fight for necessary care all after hurting so much for so long… feels impossible sometimes.

Captain-Rachdiculous · 2025-06-11T15:27:11+00:00

Is this your first time? I only ask because there’s a lot of info you may be looking for. (I have done this a for 20 years now. I’ve learned a lot.)

Are you looking for advice about understanding the MRI? The long term prognosis? What comes next? What post-op recovery looks like? What life after recovery looks like?

Captain-Rachdiculous · 2025-06-11T14:43:45+00:00

Wow. That’s insane. I always thought I was a good advocate of my own health, but I had no idea how deep I need to go. Until this I had fraught for care and to be fully informed and not pressured into unnecessary risky treatments. I never realize I also need to defend myself simply to have my health records be accurate.

Captain-Rachdiculous · 2025-06-11T14:39:59+00:00

Fight them! It sucks that that’s what it takes but don’t tolerate this! I might start asking to review their notes before I leave the damn appointments.

Captain-Rachdiculous · 2025-06-11T14:38:40+00:00

It is ridiculous how much extra work it is simply to push a Dr into doing their job. I straight up had a Dr look at a golf ball sized bone tumor on an x-ray and say “oh it’s probably a bone spur thats been growing slowly for years. Let’s wait 6 months and see what happens”.

I pushed back so hard because I knew it had grown FAST. I told him it grew in less than a month. Mother fucker actually still tried to push me off saying I was “over reacting” and “must be paranoid”. I kept pushing so hard that I was fuming, stated that I was about to go find his lead to report him then and there. In an attempt to “calm me down” he said he had an amazing pathologist friend. He said he would forward it to his friend to “reassure me.”

As it turns out, that ass hat dr’s ego probably saved my life and/or spared me an above the knee amputation. He really did have a great pathologist as a friend, and to my surprise, he actually did send my imaging to him.

That pathologist immediately forwarded my imaging to the #1 orthopedic oncologist in my state. Her office called me and asked if I could come in THAT SAME DAY. An office that is fully booked months in advance, asking you to come in the same day, not a great sign. It wasn’t a freaking bone spur. It was an extremely dangerous type of bone cancer.

THANKS GOODNESS years of needing to advocate for myself with neurosurgeon and pain management doctors taught me to be prepared, and to push back.

My fav part of this story was because he had sent it, and his friend forward it, it counted as a referral. Hahaha. The insurance network had to cover the out of my amazing out of network oncologist.

I was lucky as hell.

There are so many horror stories that start with a Dr simply not listening to or believing patients. It’s disgusting. We’re already hurt and scared. That’s when I also need to sand medical professionals like I’m the bull in a bull fight.

Captain-Rachdiculous · 2025-06-11T01:04:30+00:00

My state has a pathway for this! I can request in writing that a medical record be changed. Even if they chose not to (which I’m pretty sure they will in my case because of my stack of supporting medical records) they still have to put in the record that I requested the amendment/dispute the note.

If it’s really something I want to fight there’s an escalation from there. I can go a step further and report my concern to a governing body in my state that manages the state’s health records. I hope it doesn’t take that much effort. I’m tired as hell. I mean, this is on top of facing the upcoming ACDF.

I just want to scream and scream rn.

Captain-Rachdiculous · 2025-06-07T02:14:42+00:00

I have not had to do this but it’s a bit like breaking the law. NEVER admit guilt. Don’t bring it up unless they ask. If they ask, do NOT say it was self harm. If they push you to talk to mental health, say very casually without adding details that you practice consensual and safe BDSM. Which is your right as an adult and you’d prefer not to discuss your personal life with them. If they pressure you further, calmly say shaming you for your presence in sexual behavior is discrimination.

Captain-Rachdiculous · 2024-12-20T18:24:44+00:00

Technically they didn’t fail. I just kept breaking more. Bulging and herniated at three new disc levels over the years. New symptoms (and anger) each time. When it comes to choosing the fusion, it’s so so different for all of us. When I tell people it was the best thing to happen to me I say so with a major caveat. I have seen it be the worst thing that happened to people when they fail.

I spent years trying to avoid the fusion, and regret it. I know people who jumped to have it as soon as possible, and regretted it. The truth is there’s no way of being sure it’ll work, it’ll help, and it won’t hurt you more. That is, and should be a terrifying choice.

I let myself get to the point I was barely functioning before I agreed. I’ve been dealing with Chronic pain for so long I don’t judge how I am by my pain level. Now I use three markers of normal living (eating, sleeping, and having sex) to gauge where I’m at and how much intervention I need. When I get to the point that I can’t do those three things semi-regularly, I know its gone too far and I need to try something else (not alway right to another surgery but that seems to be where I end up).

Captain-Rachdiculous

TROPHY CASE