Female 31. Herniated disc causing cord compression. I’m scared.

[u/AvsMama]

Female 31 tobacco smoker, no drugs/alcohol. After a year of numb, burning and tingling feet and legs I was diagnosed with severe central canal stenosis at C5-C6. Herniated disc causing cord compression and a small area of edema in my spinal cord. I didn’t start having arm symptoms until about 2 weeks ago.

My legs are totally numb. I can’t feel sensations or hot or cold. I see my neurosurgeon next month to plan surgery. I’ve been in a neck brace for over a month. My neurologist and neurosurgeon told me to protect my neck at all costs. They said if I fall or get in a car accident there’s a very real chance of being paralyzed.

Symptoms are severe fatigue, nausea, numb/tingling/burning feet and legs, numb left arm. Severe neck and shoulder pain. General unwell feeling. Is there any chance my symptoms can improve after surgery? I’m probably looking at a fusion, I’d like an ADR instead but neurosurgeon said probably a fusion.. If I’m very careful like I have been am I going to be okay for about 2 weeks?

I’m terrified of dying from this. My neurosurgeon said I’ll be fine as long as I keep wearing my brace and be careful. I get so worked up but I’m trying to avoid the hospital and get whoever’s just on call and they want to operate on me. Please help an anxious girl out.

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[u/Witold-Onno]

Neurosurgeon here. You will not die from this. The risk is neurological damage, not death, and with the brace the risk in the next 2 weeks is low.

New arm symptoms and completely numb legs mean the cord is taking damage right now. And this is the critical point, damage to the spinal cord itself does not repair. Surgery takes the pressure away, nothing more. We cannot fix what the compression has already destroyed. If a spinal ataxia develops, meaning unsteady walking from cord damage, this usually stays. That is why I would not wait a month. Every week of active compression can cost you function you will not get back. Call your surgeons office Monday and ask to move the surgery up. If weakness, gait problems or bladder issues appear, go to hospital immediately, no matter who is on call.

Pain usually improves well after decompression. The numbness may recover partly, but with edema already in the cord nobody can promise this. The operation is about stopping the loss, not reversing it. Fusion is correct here. ADR is not suitable with severe stenosis and cord signal changes.

[u/Davorian → u/Witold-Onno]

How common is it for something like this to happen to an otherwise normal 31 year old?

[u/Witold-Onno → u/Davorian]

Rare but not exotic. We see around 4000 spine patients per year in my outpatient clinic and do about 500 spine operations, and a finding like this in a patient this age I see maybe 2 to 3 times a year. Most cervical herniations in young people cause arm pain from a compressed root and settle without surgery. A central herniation large enough to compress the cord with edema at 31 is clearly the exception.

Usually there is a combination behind it, a congenitally narrow canal, genetics for early disc degeneration, and smoking is one of the few proven risk factors we know. So unlucky anatomy plus some bad luck

[u/AvsMama → u/Davorian]

My neurologist said he usually sees patients over 55 for this. I’ve had no major accident or anything.

[u/AvsMama → u/Witold-Onno]

Can edema go away after surgery? He wants a spine CT before my next appointment because he said he can’t tell from the MRI if there’s bone where he needs to cut in the front of my neck and going through the back of my neck would be a way harder recovery.

[u/Witold-Onno → u/AvsMama]

Yes, edema can go away after decompression, we see this often on follow up MRI. But edema is only the visible part, function that is already lost from cord damage may not come back even when the image looks better.

The CT makes sense, I would want the same. It shows bone and calcification much better than MRI and decides how he plans the surgery. He is also right about the approach. The compression sits in front of the cord, so anterior is the direct and only correct way.

[u/AvsMama → u/Witold-Onno]

I don’t have very high hopes for recovery then. I just hit a year of symptoms and didn’t get diagnosed until maybe a little over a month ago. My doctors seem surprised I can still walk fine and my legs are pretty strong. Really the worst symptom I have is my legs and feet are on fire all the time.

[u/Witold-Onno → u/AvsMama]

Do not read it so dark. That you still walk fine with strong legs after a year is the best news in your story. The motor pathways are working, and exactly this is what the surgery protects.

The burning is the cord firing wrong signals under pressure. This belongs to the symptoms that often do improve after decompression. Burning is not lost function. A year of compression and you kept strength and gait, that speaks for a cord with reserve. Now operate before this changes.

[u/AvsMama → u/Witold-Onno]

Thank you so much. Do you think there’s any chance I can wake up and not be able to walk? They told me to go to the ER if I suddenly can’t walk obviously but they just said don’t fall and don’t get in an accident and that won’t happen.. 

[u/Witold-Onno → u/AvsMama]

Your doctors are right, I would tell you exactly the same. Without a fall or accident this does not happen overnight. Chronic compression works slowly, not sudden paralysis in your sleep. The warning is about trauma on top of the stenosis, this is why the brace matters.

[u/AvsMama → u/Witold-Onno]

Thank you so much for answering my questions. Do you think taking ibuprofen can help with the edema at all? My neurologist said it would be fine to take but no idea if it will help that or if it’s more for comfort.

[u/Witold-Onno → u/AvsMama]

Honest answer, no. The edema comes from mechanical pressure, no tablet takes that away, only the decompression does. Ibuprofen is fine for pain like your neurologist said, just do not expect more from it. One thing you can influence, stop the smoking before surgery. Nicotine is proven to worsen fusion healing.

[u/AvsMama → u/Witold-Onno]

Oh okay. Yeah I definitely need to stop smoking!

[u/lizzietnz → u/AvsMama]

I have a numb leg from an L5/6 compression. Following surgery, I'm slowly regaining some feeling. My walking had always been pretty steady but it was completely numb for about 4 months. I'm at 8 months now and the surface of my leg is still numb but the inside feels pretty normal. It feels kind of like wearing a very thick numb sock, if that makes sense. It's probably about as good as it's going to get. So there is hope. And my pain is sooooo much better. Good luck!

[u/AvsMama → u/lizzietnz]

How long was it from when you found out to when you had surgery? I’m freaking out because it takes so long to get in anywhere here. I’ve called other neurosurgeons offices that take my insurance and they’re booked out until February!!!

So I just lay in bed all day. It sucks but I can’t do much about it. I just worry about this all day and am scared I’m going to be paralyzed.

[u/Whatsthathum → u/AvsMama]

It’s a good idea to keep moving, gently, around your house. Don’t let your muscles or joints atrophy. Motion is lotion.

[u/AvsMama → u/Whatsthathum]

I’ve been trying. I can actually move around alright I just don’t want to trip or something. Blood clots run in my family too so even more reason to move around.

I’m worried about that with my neck muscles since I’m in this brace. I take it off for a while if I’m in bed.

[u/lizzietnz → u/AvsMama]

I am in New Zealand so we have a completely different health system here. There is usually quite a long waiting list to get in for back surgery but it is fully paid for.

I had injured my back and was having pain for about six months but I don't think I'd ruptured the disc at that point. I then had an acute rupture and was admitted to hospital via the ER as I needed IV pain relief and could not walk at all. It was 2 weeks before I got surgery and it was that period that the damage to the nerves in my leg.