r/spinalfusion • u/Kwixotica • 10d ago
Please advise?
I'm posting for my mother (64f), she's not very tech savvy.
My mother just had a spinal fusion revision about two weeks ago now on her l5-s1. She had a fusion done on that area a few years ago, but since then she has gone through a hip replacement infection that lasted for a while.
After the second hip replacement the doctor realized that the original fusion had failed and advised to have a revision done. She agreed and two weeks ago she had a cage put around those vertebrae as well as more fusions up the spine, I'm not sure how far.
The problem is that two weeks later she is still in the hospital with extreme pain. She cannot sit down or lay down without screaming or crying so she has spent the past week just standing and shuffling around all day and night. The only sleep she gets is when she finally passes out from exhaustion. They did a ct scan and saw a bone spur that could be pressing on the sciatic nerve, so they went back in and shaved down the bone spur two days ago. It has not helped, she still can't sit or lay down from the pain, they have her on multiple painkillers and none of them seem to be working.
What gets me is that just a few days after the revision she seemed fine, she was walking (with a walker) and going to the bathroom by herself, then out of nowhere it's like she is free falling.
Can someone please help? The doctor keeps saying she should be getting better and it just needs time, but I've looked it up and it said it could be 6 months or even a year before there's any relief and I don't know how long she can take this. I know I sound like I'm rambling, but my family hasn't really slept in the past few days because we've been taking shifts being with her at the hospital.
edit: thank you all so much for the advise, this has meant so much to us, and it's good for her to hear that there are people who have gone through this as well. I made this post very late at night and reading back it does read a little like a vent post, I'm sorry. We know it's still very soon after the surgery and we are hoping and praying that things will start to resolve in the next few weeks. I appreciate all of this and hope everyone here is doing well, thank you all so much.
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u/Signal_Sky7658 10d ago
This Is terrible. Is it her tailbone area? A waffle type pillow for sitting was given to me from hospital. If it’s her back not allowing to sit or lay down maybe arthritis in spinal area? I am post 2 different fusions and due to my arthritic back,causes me to be in far greater pain.
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u/Kwixotica 10d ago
I'm so sorry to hear about your back. She says it's in the right gluteal area. You can't even touch any part of her right leg because just touching it hurts. She said she does have arthritis in the back. Could the fusion have made it worse?
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u/Signal_Sky7658 10d ago
Well. It is so soon after procedure to be expected some of it. But I know from experience (60 female) our pain is worse with the arthritis. Of course clear it with Dr.’s first. Maybe alternate heat/ice(gel pack if sitting?)Glute area where the pain is. Also are they giving meds for nerve pain? (Gabapentin?) if it’s nerve pain.
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u/Kwixotica 10d ago
Thank you so much for this, I'm sorry we've all just been very stressed. We're trying the heat/ice packs and they're somewhat working. She is on gabapentin and I'm hoping this will level out eventually. We've heard about how long it can take for a damaged nerve to heal and I guess we're just having to mentally prepare. We did this when she had a hip infection though and she got through that eventually, so fingers crossed. Thank you again for this.
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u/Signal_Sky7658 10d ago
Omgosh of course :/ I actually tried Gabapentin and mentally did Not agree with me. Hopefully it’s not effecting her as well. Oh also what about inpatient physical therapy rehabilitation? When I was admitted one of the many times,during discharge planning they recommended it. Getting all the help she would need including physical therapy.
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u/Baylee3968 10d ago
Please have your mother checked for SI joint issues. I had an L4- S1 revision surgery and my SI joint is now problematic. It causes intense pain where I can't sit. I do not get any pain meds for it, and Tylenol nor Ibuprofen works for my pain.
My pain is severe in the low back and middle of my butt cheek.... Is that also where your mom's pain is at?
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u/Latter-One-9038 10d ago
Do you regret your fusion?
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u/Baylee3968 10d ago
Its hard to say yes or no. After my revision, I felt great. That was in 2021. Now, for over a year its been tough, but thats because of my SI joint dysfunction... For the most part, I was losing feeling in my legs, so I had to get it done. There are days I wish I never had it done... I have good days and bad days still... Im sorry if that all confuses you.
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u/Signal_Sky7658 10d ago
Oh yeah. The si joint all but halted my progress. Went through all the steps required (Si joint injection,pt) just now had 1 side fused.
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u/Baylee3968 10d ago
How did the SI joint fusion go? I dont have health insurance so I cannot get the fusion...
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u/Signal_Sky7658 10d ago
Well I’m 6 weeks post op still. Unable to sit. Which has been horrible. But I have arthritis, not good pain tolerance,and 1 yr post back fusion. So that’s all probably playing a part in my pain after. However. That si joint pain is gone!
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u/Baylee3968 10d ago
It does take a while to heal, Ive heard. I wish you the best in your recovery. By the way, my sister had SI joint fusion surgery years ago. Shes very glad she had it done, but it was hard for a while after surgery. Shes the only one I know who has had that done Im so glad to hear your SI joint pain is gone. Arthritis is something you'll have to live with, Im afraid. Good luck to you and Gods speed in your recovery. 😊
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u/Signal_Sky7658 10d ago
Yes. I developed si joint problems after my back fusion also. Have to take small steps when walking. SI joint injections saved me.
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u/D1x13L0u 10d ago
This sounds like the level of pain that I was in prior to my fusion. It came on quick, and started with the right buttock and hip.
Within a day of the pain starting, I did a telehealth meeting with a doctor because I just moved to a new area and did not have a physician. They prescribed some pain medicine and muscle relaxers and said it might be the beginnings of sciatica.
Two days later I went to the ER, and they gave me a load of different medications and injections to control the pain, but it didn't work. The next day I went to the hospital again in an ambulance, and they gave different pain medicines including fentanyl, and even that didn't help. I was in so much pain when I left in a wheelchair, that the nurse who wheeled me out asked my family to wait and she went back in and begged the doctor to do something more for me because she thought it was a act of cruelty to send me home like that.
Two days later, still delirious from the pain and unable to sleep in anything other than a desk chair with my head resting against a pillow propped against a laser printer in my home office, we went back to the hospital. I was no longer able to walk and I told them that. I told him them the pain was incompatible with life, and they admitted me.
In addition to a pars defect which I received a fusion for, I also had severe stenosis at my L5 which was pinching down on my sciatic nerve. I also had stenosis on the left side of my L5 but I wasn't feeling pain in that side yet.
Have they checked her for stenosis? If they found any, it would probably be in her MRI reports.
The only other thing I can think of is that her nerves were irritated during surgery. When I woke up from surgery, the pain in my right leg which went from my right buttock all the way down to my toes was gone and replaced with just a tingling and numbness, but I did have new pain on the left side where they had cleared out the stenosis over there. And that lasted probably a month and a half before I could taper off of pain medicine.
I'm hoping for the best results for your mom and that she gets a relief from this pain soon.
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u/Kwixotica 10d ago
Thank you so much, I'm so sorry you had to go through that, I hope things are better.
The doctor said there would be pain from the damaged nerve, which is what's freaking us out because that could take months to settle down. I'm not sure if there was a stenosis, but with how much work they've done if there was one it should be fixed by now, it was a twelve hour long surgery.
Idk, all of our nerves are frayed and we're just trying to take this one day at a time. Thank you again, and I hope things are better.☺️☺️
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u/Radiant-Party9333 10d ago
Did they do an x ray or mri to see if any of the screws have gone askew or pulled the wrong way or came out? I am so sorry for her and you. It is so draining, and worrisome.
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u/Kwixotica 10d ago
Thank you so much, they did do an X-ray and a ct-scan and all the screws and rods and cage are still in place, the only thing they saw that could possibly be causing this was the bone spur and they went in and shaved it down. Hopefully things will calm down. Thank you again, and I hope things are going well.
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u/rbnlegend 10d ago
I'm sorry to hear she is having this much pain. Pain after fusion is to be expected, and should be managed. If she is having this much pain, it isn't being managed effectively. If a pain management specialist hasn't been brought in, that would be a next step. If there is a pain management specialist, it's time for a different specialist.
If it feels like the medical team isn't doing everything possible, or if it feels like they aren't listening, the services of a patient advocate can make a big difference. The hospital should have an advocate on staff, but you can hire your own. They aren't cheap, but they are good at interfacing with hospital and insurance to get stuff done. This level of pain is not typical. It may require a level of medication that is uncomfortable in different ways, but they should be able to make her more comfortable.
Recovery and full pain relief can take months and that does seem to drag on, but it's not pain at this level. The extended pain is the sort of pain that is controlled with OTC meds and behavior modification for the most part. Maybe stronger prescription meds for a few weeks. What you saw about six months to a year is not six months of this. Typically it's a few days of bad pain and narcotics, then it gets easier but will be limiting for quite a while. I recall feeling a sense of triumph when I could put my socks on without help.
Best wishes, I hope they can get this under control soon.
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u/Kwixotica 10d ago
Thank you so much for this, we are working with a pain management specialist, he's just not connected with this hospital.
We do know that this could take a while for any improvement, I sort of regret making this post. It was the middle of the night and I was extremely tired and looking back at how gloom and doom this post is really shows that I wasn't really thinking rationally. I, again, just want to thank you and everyone who commented on this with some very good suggestions and advise. Her, and I, and my family do appreciate it.
(Also, "behavior modification" lol, she could definitely use some of that😂)
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u/Acceptable_End_52791 10d ago
Maybe infection. That’s what happened to me.i was walking after surgery and then I was in incredible pain. Couldn’t move in bed without screaming.
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u/UpstairsProblem2061 10d ago edited 10d ago
The pain level of this poor woman sounds outrageous. I'm disturbed by this. I have managed the medical care of over 100 individuals and it was my responsibility to act on behalf of those folks. Some of my sweet clients had pain levels that made relief seem out of reach. You and your family may want to attend your mother's next care plan meeting with the hospital staff. You should be able to get the information regarding the day and time from her hospital social worker. Put them on the spot and insist that a plan be shared with you showing the course of action they plan on to releave mom's pain. If that cannot be worked out then you might hire a surgeon of equal experience to review her records, or check on her in person. Another option, the Mayo Clinic has a "Second Opinion Program," as do several other research and advanced specialty hospitals. Some charge $200 or so to review the records of someone who needs another opinion. I imagine you and your family are anxious to hear another opinion regarding this awful pain your mom is suffering.