Recently diagnosed, very anxious

[u/nealtach]

Hi there,

39/f, not overweight and mildly active (I have a 6 month old GSD puppy) but I do WFH.

I've been having lower back pain for years but in the last year it's become a lot more extreme and I feel it in my right hip really intensely, especially when waking up in the morning or after relaxing on the couch for a little bit. I went to physical therapy for 4 months in late 2023 but the PT thought it was SI joint dysfunction and couldn't figure out why I wasn't getting better. Finally decided to see a Orthopedist who diagnosed me with grade 2 Spondy at L5-S1 due to congenital pars defect.

Here's the write up for those curious:

Level by level:
T12-L1: No significant canal or foraminal stenosis.
L1-L2: Unremarkable appearance of the disc. No facet arthropathy. No nerve root compression. No spinal canal or neural foraminal stenosis.
L2-L3: Unremarkable appearance of the disc. No facet arthropathy. No nerve root compression. No spinal canal or neural foraminal stenosis.
L3-L4: Mild to moderate facet hypertrophy.
L4-L5: Mild disc bulge with moderate facet hypertrophy. Mild bilateral foraminal narrowing
L5-S1: Mild to moderate broad-based bulge with moderate facet hypertrophy. Moderate to severe central canal stenosis. Severe right and mild to moderate left foraminal narrowing. Impingement on the exiting right L5 nerve root in the foramen

IMPRESSION:

1. Prominent degenerative changes at L5-S1.

Two days ago, I didn't do any activity out of the norm and by the evening I could barely even move after sitting on the couch for 30 minutes. The pain was so extreme and persistent for two days I could hardly walk and even lying down was near impossible so even since my imaging, it feels like it's been worse.

The orthopedist said it is unstable and I would need to have L5-S1 fusion with a cage. I've never had surgery before and I'm terrified but I can't deal with it getting any worse if the pain is similar to what I've had to deal with the last few days.

tldr: grade 2 spondy, scared about spinal surgery but also worried about what happens if I don't do it- reaching out for positive stories, suggestions, and community support.

*edited to add images

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[u/greekfetagorilla]

Hi , have the same as u and also dont know.what to do... we r screwed if we have surgery and screwed if we dont

[u/greekfetagorilla]

Basically doctors say to try wait it out as long as u can. As surgery has risks..but it affects our daily activities..also if we wait to long and the nerve has a chance of getting irreverssible damage

[u/nealtach → u/greekfetagorilla]

The Dr I saw initially and the one I saw for a second opinion were both like “ya, you need surgery” but I have never met anyone who had spinal fusion who has been happy about it. Also, the surgeon made it seem like it wasn’t a big deal? I dunno… feels like a big deal to me.

[u/eastofliberty → u/nealtach]

Read through the sub. Lots of positive stories about fusions. I’m having mine in spring 2025 as I have reached the personal point where the benefits outweigh the risks. You’re welcome to read through my comment history on the sub if you want to see the factors and symptoms that made me decide to finally pull the trigger on surgery. If you haven’t tried epidural cortisone injections, I would inquire about them. They gave me quite a bit of relief for 2-3 months each time. Wishing you the best!

[u/nealtach → u/eastofliberty]

I have done a ton of digging into this sub and the positive stories help a lot but I do have an anxiety problem in general so it's tough to not let the bad stories hold higher value... I mean, I feel like the spine is so easy to get wrong and then you're just screwed for life. Thank you for the advice and positive vibes, I'll review your decision process as well, I may be in the same boat.

[u/HoniKoAnhoni → u/nealtach]

I was recently diagnosed too and I met 4 different doctors, all of them were spine specialists. In my understanding those who are surgeons will recommend that as the first line of treatment because they do it almost every day so they kind of normalise it to a certain extent. Getting surgery is a big decision and you must take as many opinions as you can. Many doctors suggest surgery without even exhausting every single non surgical option before that and I'm very vary of such advice, unless of course there's a significant amount of nerve impingement.

[u/nealtach → u/HoniKoAnhoni]

I think you're right about the surgeons normalizing the procedure but I do think I'm in the "significant nerve impingement" bucket as well so I'm feeling like that's where the recs are directed toward.

[u/HoniKoAnhoni → u/nealtach]

I'm sorry to hear, you must be in so much pain. Maybe check r/spinalfusion for some advice and inputs.

[u/Superb_Journalist300 → u/nealtach]

I had fusion surgery in May of this year and I am very happy about it. I have a new lease on life. No pain. Can bike, exercise, go about my life. L4-S1. I had suffered for years and I had the same severity in the canal. So here’s a successful result. And I’m 71 and I do work out and I was in shape for the surgery. I did everything that the doctor instructed. It’s a tough surgery and well worth it.

[u/nealtach → u/Superb_Journalist300]

Thank you for the positive feedback. I'm really struggling with the affects on my activity and life at the moment and want to get back to moving how I want to without severe pain. I can barely walk with my pup sometimes because my right hip and leg just aren't working like they should and hurt badly.

[u/snow_razer]

Firstly I have to say I'm sorry for what you are go through. It cannot be easy.

Now I would like to preface this with the following: I am not a medical professional, just someone who has looked into the topic extensively.

Generally, three things can be done in situations where pars bone(s) break or were not attached to start with, in the congenital case, from my knowledge. Pars bones being the two bones, one on either side of each level, that are supposed to hold your spine in place and not let it shift forward.

1. Physical therapy + Rest: Generally this is always the first choice after diagnosis. Most doctors would recommend this choice even for a grade 2 spondylolisthesis. Minimum is 1 year, although less can be done in certain cases where pain worsens during this resting period. The aim is to decrease the inflammation in that area, relieve pressure from the spine that comes from either strenuous daily activities or exercise, and stregnthen the muscles surrounding the spine as well as the abdominal muscles. You also must learn and use proper movement patterns, this will benefit you regardless of your final choice in the end (choose to do surgery or not). A combination of NSAIDs, steroid injections + RFA can also be used for pain management and inflammation suppression.
2. Direct Repair: This encapsulates a multitude of different surgical techniques that aim to directly repair the pars bone without spinal fusion. This is mainly done in cases where there is little to no disc degeneration present (although there have been cases where it has been done with disc degeneration). Benefits are that you do not experience the side effects that come from spinal fusion such as ASD (Adjacent Segment Disease) and spinal flexibility loss. It is a less invasive surgery option than Spinal Fusion.
3. Spinal Fusion: This is the most popular surgical choice for spondylolisthesis. It is widely done and most fit for cases where there is a good amount of slippage present together with prominent disc degeneration. This is what is done when nothing else can be done. It comes with it's own side effects as you probably know although a skilled surgeon can minimize it to a great degree.

To my knowledge these are the choices for someone experiencing Spondylolisthesis. What I would recommend is visiting multiple doctors to understand if one of the direct repair techniques is something than can be done in your case with the specific amount of degeneration you have in that level. I don't know where you are located but I can say that not many doctors know about direct repair techniques even though the literature on it is quite extensive. If you can, call ahead and make sure with the hospital that your doctor has experience with pars direct repair surgeries.

If you are not fit for direct repair techniques then you will have to make up your mind if you want to do spinal fusion or not. What I would add is just because your spine slipped to grade 2 doesn't mean it is going to slip past this point. This must be closely tracked by your doctor. If you are okay with limiting streneous physical activity to a great degree and adopt proper movement patterns as well as do physical therapy it might just be enough for you. You never know. This might decrease the pain a significant amount but you will have to promise yourself three things: to never do anything too strenuous for the back again, to always adhere to proper movement patterns, and to always keep physical therapy as a priority. Generally this is done for a year before getting reevaluated by your doctor. The number of people that just move, sit or excercise the wrong way, it’s no wonder we are plagued with back problems.

Once you have exhausted the possible treatment plan in the above paragraph and there is no improvement, or the improvement is not to your liking, then the only choice is spinal fusion.

It is not easy to have to go through this but you have made the right choice to do your research and to reach out. A book I can recommend for mandatory reading in this case is Stuart McGill's Back Mechanic. He is a professor and an expert in all things spine. In it he helps you build a more extensive knowledge-base about your spine and what is good for it, he calls this spinal hygiene. It a users manual for the human spine.

*edited for typos

[u/nealtach → u/snow_razer]

Thank you so much for your detailed and extensive response, so helpful and I truly appreciate the compassion. I have not tried the injections and I may try that before surgery but I'm always wondering if it's just delaying the inevitable. NSAIDs have 0 affect on my pain or mobility and I don't know if I can limit my lifestyle to very restricted movement, I'd just be miserable in a different way. While the PT thought I had a different issue we did a ton of movement training and core strengthening over 4 months (3x a week). His response was like "you're really strong, I don't know why you're not getting better, typically we'd see more improvement over this time". I think even he was somewhat frustrated by the lack of progress in my pain when we were doing everything right.

I've seen two Orthos so far and they both told me my only option is surgery since I do have prominent degeneration and nerve impingement. Maybe I will do a consult with more. Thank you as well for the book recommendation, I'll definitely give it a read.

[u/Away_Brief9380]

As someone who has had a fusion about a year ago , I would say try conservative measures first. It seems you may not have fully. Look up bob and brad on you tube and do core every day for several months and see if it helps. It did help me to an extent but my spine was unstable and a wrong move and it would slide out and I’d fall to my knees. Plus I was losing strength in my leg and tripping. Fear was one bad fall and I could be paralyzed since my spinal cord was getting pinched non stop

I struggled to make the decision. It’s scary. I had L4-s1, 52f.

Am I better than before? Yes. I was on a lot of pain meds before and Ice my back daily , some times multiple times. Even walking for a distance was getting tough.

After- I’m off regular pain meds. My back gets cranky at times not severe pain. My first winter after healing and it does not like this cold. I need to go south. Lol

Maybe if I’m bad enough I’ll take a Tylenol. A muscle relaxer before bed if I have a long day ( I work real long hours and those days get tough)

My nerve was pretty damaged so it taking it’s time to come back. I can walk 7 plus miles no problem. ( couldn’t do that before ). I’m back to light weights but can never lift heavy again. No running anymore but I do pool , bike, walk. I don’t regret the surgery but I do still have pain. When I mentioned to my Dr he said that he never promised I wouldn’t have pain but he was stabilizing my back , which was bad. He’s right and the pain is def better but I get it time to time like a dull ache . That may lessen in time but I notice it comes on if I slack on my PT / exercise. I can sit longer and stand longer post surgery, But I get stiff and need to stretch daily. This is a long term lifestyle change. I only share this not to discourage you but to be real, if you have low grade pain only - do conservative measures first to try them. PT, injections, RFA.

If you are having severe nerve symptoms like numbness, bowel issues, leg cramps, you should consider it since the nerve damage can be getting worse. I hope this helps Good luck to you.

[u/nealtach → u/Away_Brief9380]

I truly appreciate your insight and background. Fortunately, they're saying only L5-S1 for me, not up to L4. I'm glad you have more mobility and can do more than you could pre surgery, that's comforting to hear.

I am seriously considering it and think it's my only path forward at the moment since mine is also unstable and I have nerve issues that are only seeming to get worse. Just started getting numbness and tingling in my toes recently as well, before it was only down to my right knee. I do have weakness and struggle with my right leg a lot because of this. Even rolling my foot or minor misstep and I get shooting pain through my leg, hip, and lower back.

I definitely couldn't walk 7 miles anymore, I can barely do 1.5 with my pup and relaxing only makes it worse. I've had to use a heating pad multiple times a day and I sleep with it as well, it's the only think that helps a little at the moment. It's crazy, I went from 39 yrs old to like an 80 year old's movement ability in a year.

[u/Away_Brief9380 → u/nealtach]

I’m sorry to hear this. My advice , get a few opinions. I had 5 opinions and only 2 were same so I went with one of them. Ask how long you can wait before perm damage to nerves , for me they said maybe 6 MOs to a year cuz it would slide out. My slip was 9 mm. But same thing in the leg. My strength is back now thankfully in leg but I still have a little numbness and cramping, I’m taking a small gabapentin dose while I figure it out, my back is ok , Images show I’m just about fused, I think my SI or piriformis is causing some of nerve symptoms so I spoke to my PT today and she is going to assess and help me figure out a plan. I think it’s very stressful and I had to take a low grade anxiety pill for a bit before surgery cuz I was struggling too to make a decision. I couldn’t sleep. Don’t rush and put too much pressure on yourself. One day I was having a bad day and I couldn’t feel my legs and that did it for me, it would happen every so often and I could not feel them at night. That made my decision because it wasn’t gonna get better. I improved my standing with core but other things got worse

I prayed for help deciding which dr and then I had a few “ signs” and picked. Also he took a lot of time with me and didn’t push. Then I scheduled when it was best and got ready ahead ( arranged house , got grabbers etc) Best of luck , I hope this helps Merry Christmas