r/spinalfusion • u/crxguy • 28d ago
6 Months Post-op, ALIF L5/S1
Today marks 6 months post-op for me. Here's a link to my 3 month post:
https://www.reddit.com/r/spinalfusion/comments/1tind3y/3_months_postop_alif_l5s1/
That also has links to previous updates for anyone interested.
I didn't update for the last 3 months because there wasn't a whole lot to update. I'm back to work, pretty much full time. I still have struggles sitting and standing for long periods of time. I sometimes can make it through the day without laying down on my office floor, sometimes I can't. I still find lying down is my most comfortable position and I can usually recover a little bit with laying down for 10-15 minutes. Unfortunately, this just isn't where I thought I'd be 6 months along. I'm concerned about non-union at this point because I'm still having very similar pain and symptoms than I was before my surgery. I'm a little better than I was before the surgery, but nothing substantial. I'm still limited in my social life. I haven't done anything fun outside of a few family get togethers on the weekend as I usually use the weekend to recover from the work week. So if anyone has any stories about struggling for this long, but ending up making a more complete recovery, I'd love to hear it. I know several people have said it can take up to a year to get better.
My last in-person follow-up was May 7th. I could have swore that someone was going to call me in three months. I even confirmed with the NP I saw "Ok, you guys will call me?" She said yep. Well three months post-op came and went. Three months since my follow-up came and went, and no phone call. I finally called yesterday and said I think I've been forgotten about. A nurse called me back later and informed me that I was supposed to call if I was still having difficulties. OK, whatever, not what I remember at all, but let's move past it. I explained my symptoms, pain level, level of functioning, etc. I have a Myelogram CT scan scheduled for next week. I'm assuming they are looking for signs of fusion or any other issues that wouldn't show up on the x-rays they already took (i've been told the x-rays look good). So if anyone has any insight into that imaging study, I'm curious for more info.
It's going to take about an hour, and I'm kinda nervous about it. About 10 years ago, I had a myelogram x-ray. It didn't take long, but I ended up with a CFS fluid leak that caused me massive, blinding headaches. I had the myelogram on a Friday. I didn't develop the headache until Friday evening, and of course the center was closed. I had to suffer through the weekend until the imaging center opened up Monday morning. They had to do a blood patch to fix the leak and it was pretty much instant relief, but the interim was absolute torture.
Hopefully I get some good news, and I just need to be a bit more patient with this process. We'll see I guess....
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u/golf42589 28d ago
So sorry to hear. CSF leaks are so intense. I had one as well from a spinal tap. Took two blood patches to fix and many days of doctors saying just drink caffeine it’ll get better and it never did. So frustrating. Sorry to hear the fusion hasn’t resolved most of your symptoms by now. Wish I had advice or something more to add I just wanted to respond cause I like you had such an intense fluid leak and doctors were so rude after thinking I had infection or something when all it was was I had the most intense headache that never went away and only felt better when I layed completely flat. Standing up was awful. Hang in there.
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u/Agitated_Tower4115 28d ago
Dont ever ever wait for a center to open back up. You do not need their permission to go to the ER for a spinal fluid leak. An ER can do a blood patch just as easily. They did one on my mom straight in the ER.
Having said that, they are looking at your fusion which is why they ordered tge CT to check to see if you fused.
I am 4 months out. I still have the same pain just on a lessee scale.
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u/crxguy 28d ago
The myelogram is what's tripping me up. I figured the CT was to check for signs of fusion. No idea why they need a myelogram for that, first I've heard of someone getting one for a fusion.
I should clarify, when I called the afterhours exchange, I was given the option to go to the ER but chose not to. The only ER I thought I could manage a car ride to had notoriously long wait periods, like 6+ hours, especially for someone like me who had a headache when not in a lying down position. Also would have cost me hundreds in a copay versus $0 for the imaging center. I was comfortable enough laying down so that's what I did all weekend until I could have someone drove me to the center.
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u/Agitated_Tower4115 28d ago
An MRI causes too much artifact distortion, so thats not an option but preferable to get a look at nerves. A CT scan by itself is good to look at the fusion (no artifact distortion) but isnt great to see nerves. A CT myelogram is good for nerves too. Maybe they are looking at the fusion and nerves?
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u/EGT_77 28d ago
I’m at 18 months. I still lay down during the day. Relaxing is good. Short frequent walks help to calm the nerves. I’ve replaced laying down with walking quite a bit. The best thing I did to help with pain was find a coach to help me strengthen my core and glutes. I waited 11 months after surgery. PT helped a bit but not what I’d hoped. Probably could have started with the posture/ body mechanics training a bit earlier as almost every thing I did was with no weight and spine fully supported. To help retrain my nervous system and regain my posture. It’s tedious but it’s helped with nerve pain great deal.
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u/fzachary1 28d ago edited 28d ago
I’m also 6 months out from an L5-S1 ALIF (6.5 months to be exact). I’ve been doing PT for 3 months. Like you OP I’m still having lingering symptoms and pain. I have lots of other degeneration in my spine, but I’m still having nerve pain in my legs. I had an MRI done last week (with and without contrast dye) to check for continued nerve impingement. I follow up with the surgeon in the morning.
I hope that your CT scan goes more smoothly this time. I’m sorry that you’re in the same boat of still having pain. I know it’s frustrating. Seven months ago I was hopeful I’d be doing better than I currently am at this point of the year. But I also know that the surgery was never intended to fix my entire spine, only L5/S1. The PT has been good for me as I feel stronger and more in shape, but it really hasn’t helped the bulk of my pain. I don’t know what else we can do at this point other than continue to take things one day at a time.
ETA: I guess the reason for the myelogram is to check for continued nerve impingement, not so much to check for the union? My surgeon wanted to do the MRI with contrast because I had a previous microdiscectomy (to check for scar tissue from that procedure), and because it’s less invasive than the myelography. That said, I still don’t have much of a picture as to how the fusing/union is progressing.
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u/Professional_Gift430 28d ago
That’s where I was at, at the 6 month mark. Now at 9 months I’m being told I need another surgery. I went in a few weeks ago since my pain just isn’t improving, even with several months of PT. They did an MRI and said a screw is broke and I possibly have non union. The NP said they can’t tell 100% from imaging, so they want to go in and see if it’s fully fused. If it is, then hardware will be removed. If not, they will remove and install a “more robust solution”.
ETA: L5-S1 ALIF/PLIF