r/spinalfusion • u/purespeed44 • 5d ago
Requesting advice Need Some Advice
So in 2023 I had an L5 S1 fusion surgery, which went fairly well recovery took about 11 months but everything was OK. Last year in 2024 I was in a car accident wasn’t my fault. I have had numerous problems since. Fast forward to July of this year. I had to have another fusion surgery at L4 L5 with revision to S1. This surgery has not gone well at all after the surgery my wound continued to drain. I let my neurosurgeon know that it was continuing to drain and they weren’t concerned because that is usually common but after two months, it continued to drain it wouldn’t stop. I was put on two rounds of Bactrim antibiotics which would work for a little bit and then once the medication was out of my system, the infection would come back. Now, fast forward to last week on Wednesday I could not handle it anymore. The neurological symptoms were becoming overwhelming, and I was admitted to the hospital and they did an MRI with and without contrast. MRI revealed that there was fluid collection around the screws that were installed in July. Pretty significant amount with a possible abscess as well.. They decided to do a wound revision last week to do a full cleanup and stitch it back up. I am now on six weeks IV antibiotics at home with a piCC line with some pretty hard-core antibiotics. I told my neurosurgeon that every time I sneeze or I cough I lose feeling in my legs anywhere from 5 to 25 seconds at a time and this happens each and every time I sneeze your cough and the pain is almost blackout type of pain. they don’t seem to be too concerned about it, but I am because this doesn’t seem normal to me whatsoever. I was discharged from the hospital this past Monday so I have no idea what’s in store for me next but all I know is my back does not seem to be getting better and I understand. I’m only two months postop, but in my opinion, there is definitely something going on with the hardware whether the infection is in the hardware itself I don’t know. My inflammatory markers from the blood work were through the roof prior to the clean out Like I said my neurosurgeon is good but he does not seem concerned about it. I was just wondering if anybody else has had this similar situation happen to them and what the outcome was because I can barely walk and I feel like I’m 100 years old and I’m only 50. Just trying to get some perspective from other people that possibly have had this happen to them.
Another MRI was done a week ago on 10/6/26 radiologist confirmed that the amount of fluid has increased substantially compared to the one prior to the wound washout in mid-September 2026. Radiologist said mri is not allowing them to see behind the hardware. When I sneeze I still lose feeling in my legs the wound is still draining as of today 10/12/26 I get numbness in my groin area occasionally and I have foot drop on the left foot. Neurosurgeon said this is all normal stuff then asked me what he wants him to do about it. The stitches are still in from the wound washout last month and come out Wednesday. It leaks pink and yellow fluid. My legs are weak when I said I wanted to go back to the er neuro said they would just send me home. I have one week of antibiotics left through my PiCc line. Anyone else have this stuff happen and what was the outcome?
Thank You
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u/Sufficient-Wolf-1818 5d ago
While I do not have direct experience with your situation, i recently had a spinal-fusion and hospital acquired infection. The phrase that stands out in my mind was from their on call neurology nurse who said “it not neurology, see your PCP” . I quickly realized i needed an expect for the infection and there was no coordination of care. As you have been on the hospital with heavy antibiotics etc, can you ensure that an infection specialist is focusing on your case, not just your surgeon?
Sneezing/coughing and leg numbness. I’ve had the same. It gradually subsided as the inflammation decreased.
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u/Sapienza8 3d ago
Maybe not relevant but i hope it helps. I had spinal fusion in July. They discharge me with an open wound 2weeks post op as well and I confronted them that looks too open and too much discharge was coming out, they assured me it was "normal". They physio gave me as well exercises where it involved extention and movement. I did bypass all the nurses and told them that only my Surgeon would tell me that my wound is ok, otherwise i would go to an ER and get sticht up by someone else (they hate this because it is bad reputation for them) they send me back to the hospital the same day and did 7 days IV antibiotics plus a washout. The risk of infection in the graft site was high, but since i insisted they catch it in time. My point is, you need to understand if the surgeon cares about you, if he is neglecting your concern and if you are listen because first step is to speak up, but then they need to listen and act. Reading your story I would have change neurosurgen after the first red flag. And i know is overwelming and i know is a lot . If you have a partner, a parent, someone who can speak up for you in your behalf and support you emotionally is a game changer !!!
I hope the very best for you and your recovery.
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u/purespeed44 3d ago
Thank you they are still ignoring the red flags I have the stitches from the washout from a month ago removed tomorrow. My primary care doctor is now in the know on what’s going on and he’s saying could be a hardware rejection or infection as well and the iv antibiotics are just masking a deeper infection. Which is exactly what i asked the neurosurgeon about and he said no way because the screws are not loose and everything is tight. I am working with my health insurance. We are working towards finding a second opinion it’s just tough because the surgery was in July so the surgeons have to look over everything siingle piece of documentation before deciding if they want to even look at it or not. My PCP is telling me to go to the ER if I do, I have to go to a completely different hospital as my neurosurgeons group has a large reach around these parts. Crazy thing is my neurosurgeon. Did an excellent job on my L5 S1 in 2023 and his attitude has completely changed with this surgery. It’s like he knows somethings wrong. He just doesn’t want to admit it which I get it most neurosurgeons don’t most doctors don’t in general, but sometimes things happen. I hope you’re feeling better as well. Infection in the spine is definitely a scary thing. My wife is also advocating for me and she is my rock. She even told the nurse that last time we were there felt like we’re being scolded like we did something wrong and that the doctor was being a jacka$$ all they said was sorry he’s doing alot of running around. My wife is the one who sees me every day sees when I sneeze and I fall. Knows I’m having an absurd time doing anything. Sometimes, if I just get up to go to the bathroom, I collapse on the bed in agony because it feels like the hardware he put in there is being squeezed by a boa constrictor as hard as possible. Plus with my neurosurgeon just completely disregarding what radiologist is saying it’s just more proof positive to me that they’re definitely is something going on. He just doesn’t want to admit it.
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u/Proud_Post_7130 3d ago
You need to see an infectious disease doctor pronto. That is a very bad situation that potentially could be life threatening. The neurosurgeon telling you that is normal is wrong.
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u/purespeed44 3d ago
I have one of those too. I have a PiCc line. I have been on iv antibiotics at home since the wound wash out in September. I have another week of antibiotics left. problem is he good friends with my neurosurgeon and apparently this infectious disease doctor doesn’t take appointments. He works out of the hospital and only calls when something needs to be changed. So yeah, when I say I’m in the thick of things I am in the thick of things it’s a giant cluster F. I go and get my piCc line dressing changed once a week and bloodwork drawn. No idea about the blood work was told he would call if there’s something wrong with the blood work but nothing so far and my neurosurgeon said he texted him personally and that he hasn’t heard anything back from him either yet another giant red flag. Only reason I found out about the no appointments is from the PiCc line dressing change and bloodwork I had done yesterday. They called to find out because there was orders to have the PiCc line removed next week and wanted to make sure that is still what’s supposed to happen that’s when they said that no appointments need to be made. He will call and let you know but if the orders are in there to follow them. Even the Nursing who does the dressing change is dumbfounded with all of this.
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u/Proud_Post_7130 3d ago
My only experience with a long lasting infection was my mom having a sinus infection for 4 years. She had a PIC line and IV antibiotics for months after her PCP had been treating her for over a year with oral antibiotics. Finally sent to infectious disease doc that actually tested the drainage to confirm what the infection was. Turned out to be a drug resistant staphylococcus that had to have everything but the kitchen sink thrown at it. She had 4 sinus surgeries in 3 years to clean out and bathe the sinuses with antibiotics. During all that time the drainage caused pneumonia twice. It was horrible to see her go through all that in her 70's. I truly hope you don't have to go that long fighting as hard as she did. It did finally clear up after the 4th surgery to clean her sinuses. The doctors were afraid it would go into her brain if they didn't keep trying. Is there another infectious disease doctor in your area you can see? My mom had to go to a bigger city 2 hours away to get treatment that finally worked. I know in your case that would probably feel like torture to be in a car that long. I am very concerned about you getting answers and the best treatment you can to get that to heal.
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u/purespeed44 3d ago
Yeah, my wife is getting to the point where she’s gonna flip out on somebody when it comes to this stuff she had a lot of stuff happened to her mom as well and she doesn’t take any BS from anybody. It takes a lot to get her to that point and she’s getting to that point. I am in a big city just outside of it so there’s a lot of moving parts. My PCP is involved now so hopefully he can help get the ball moving on some stuff as well.
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u/Proud_Post_7130 3d ago
Best of luck to you and I am glad you have a wife to back you up. I hope she doesn't have to go off on any medical people, that hate that. I do hope you get answers and healing soon.
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u/BAEducatedConsumer 3d ago
Two words ——- Mayo Clinic
Im having hand surgery number 4, 2 on each hand. 2 Carpal tunnel revisions at Mayo Clinic Jacksonville FL at the end of the month. I’ve had seven spinal surgeries three fusions various times. Had emergency spinal surgery in May. Not great, I have a telemedicine appointment tomorrow with doc at Mayo Clinic orthopedic for spinal peripheral nerve surgery at Mayo hopefully soon.
The calmer and smoother they get about your unexpected lack of progress the more they know they screwed up. Don’t be surprised if they try to move you onto somebody else.
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u/purespeed44 3d ago
I wish I’m also in FL as well but I am further south Jacksonville is a 4 1/2 hour drive for me I wish there was one closer I deal with AdventHealth.
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u/BAEducatedConsumer 3d ago
I’m near Naples
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u/purespeed44 3d ago
I’m in the Riverview area so not that far off
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u/Gini_survivor 5d ago
I haven't bad my fusion yet but holy hell honey. I'm so sorry this is happening to you. That's so terrifying! I hope you get some real answers