ACDF scheduled for Wed: How did you manage sleeping post-op?

@birdman518 Mitch, it is perfectly OK to vent here, and that is preferable. I have had an experience where I had carpal tunnel surgery and my symptoms were still there because the doctor had missed that I had thoracic outlet syndrome. When I brought the symptoms to his attention and told him my hand was turning blue, he got a bit nasty, took my pulse, told me I was fine, and he accused me of malingering. TOS does alter blood supply to the arms and hands, so he missed something crucial. You need to stay on the good side of your surgeon, so be careful in how you address him. They never want to make mistakes or have something like that on their record. I do know how hard this is to be a patient and trying to get better, but still in pain. With your very recent surgery, there will be pain from the surgical path too which is traumatic to the body, and your body is exhausted just trying to heal. I hope I can shed some light on your situation.

Myelopathy is a huge concern, and if you had significant spinal cord compression, you probably would have had the same recommendation from most spine surgeons because preventing further damage is the reason they do surgery. They can't always promise to take away pain. I had myelopthy too, but early enough that it did not show up on an MRI. If you had whitish diffuse areas within the spinal cord on your MRI, that could indicate permanent damage because the nerve axons die and dissolve, and the missing cells show as a whitish area.

When you have very specific nerve pain such as in your thumb and index finger, that pain can be caused by compression or inflammation causing pressure anywhere along the path of that nerve from where it leaves the spinal cord and the path all the way to your hand. The nerves exit between the vertebrae and each level is named on the dermatome maps for the vertebrae under where it exits. If you are have C5 nerve palsey, that is the nerve that exits at the C5/C6 level (being below C5). If you were having an issue at C6/C7, nerves that exit there would be the C6 dermatome. You are correct that the C6 dermatome involves the thumb and index finger. A neurologist needs to figure out exactly where pain from the C6 dermatome would be coming from. It could be the spinal nerves in the foramen, or it could be from elsewhere in the body. You can always ask for an explanation on your MRI about potential issues in the foramen next to the C6/C7 disc. The disc may have been intact or not bad enough to require surgery, and they should be conservative unless there is a real need to intervene. My C6/C7 looked like it was bulging to my untrained eye, but the surgeon said it was OK and just removed C5/C6, and now 5 years later, he says everything still looks good.

Here are some links that show the dermatomes and related nerves.
https://www.ebmconsult.com/articles/anatomy-dermatomes-hand
https://www.neurologycentersofchicago.org/numb-hand-map
I also found some research about C5 Palsey after cervical spine surgery and possible causes for this. One explanation is that the spinal cord moves into a new position which stretches the nerve roots, and because the C5 nerve root is the shortest, it gets stretched and compressed against the bone of the foramen where it exists. When you have cervical problems, often a patient looses the correct curvature in their cervical spine, and that curve could change after spine surgery. My neck was very straight like a pole before surgery, and my physical therapist was helping to maintain it as best she could. I did not have a surgical "Curve correction" that would involve hardware as some surgeons want to do. Changing the curve does change how the spinal cord will be positioned as it floats in the fluid within the spinal canal. The study mentions also doing a foramintomy (to expand the foramen) during the cervical surgery to prevent C5 palsey. It also mentions physical therapy specifics to help address this. I would recommend that you call your physical therapist with the study and ask their opinion. While they cannot make a judgement about spine surgery, they may be able to guide you in how to understand this literature and how to approach it. My physical therapist has taught me a lot and how to understand my own symptoms.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6690123/
I hope this information helps. If you feel that you are not getting a good explanation from your surgeon, you can always get another opinion, and perhaps a neurologist opinion would be good, as they are not a surgeon who could be blamed for a condition that could be a risk to the surgery that you had. Since your surgery is very recent, another spine surgeon may not want to give you a consult.

You could also phrase the question to your surgeon and ask what happens when the spinal cord is freed from its tethered position and could this start pulling on the nerves? He may answer that. You can ask him to explain how the steroid injections were expect to help the situation. Ask him what therapies or possible additional treatments may help? If he doesn't explain, you may want to ask a neurologist.

What was the diagnosis that you had for your arm and hand problems before your spine surgery? Has anyone ever suggested something like carpal tunnel or thoracic outlet syndrome as a possible contributing factor to your symptoms?

Suggestions solicited for tomorrow's 1st post-op visit with surgeon:

Here is the bottom line. Nothing I undertook this for is better. In some ways I have more arm pain than before. My C5 nerve palsey is slightly better than the day after, but I still have lost 50% of my right (dominant) arm usability. That is a new problem.

How should I approach this with the Dr.? I don't want to be or even sound angry, but I am a little bit. What should I expect him to say?

Even if I get back the new problem with my right arm, I say I am worse off than before.

Here is the hardest part to say. I went in thinking I would have an ACDF for C6-C7, which is the exact symptom I have had for several years. Pain and numbness down my right arm, with particular numbness in my thumb and index finger.
Neither this Dr nor the neurosurgeon I consulted beforehand recommended doing this. With the same images and neuro reports, they both independently recommended this surgery that I had. Now to be fair, I believe that my problems were extensive, and included myelopathy probably around C3-C4.
They only explanation I can think of is that my C3-C6 was addressed to what they saw as my most pressing issues, and/or to avoid longer-term damage to my spinal cord.
Still, if that were the case, shouldn't either of them indicated that "BTW this surgery, despite being 3 levels, essentially does not address at all your primary arm and hand problems".

Thanks for letting me vent a bit, but comments are always greatly appreciated.
Mitch

Mitch , did you have your surgery at Mayo ?

I had my 2 week followup today, and overall I am okay with it. I explained that even despite my nerve palsy (which the PT does seem to be helping) I have more pain in both arms than I did before.
They took X-rays of my neck, and we went over the "before" pics. My issues, both for my nerve roots (I had C3-C6 done) were very narrow, and I had very bad compression of my spinal cord as well. Two significant bone spurs were also removed.
He explained how this is still very early, even for rapid recovery, which might be 4-6 weeks. I do understand this and want to give it time.
He did give me an Rx for Gabapentin for pain. I am going to try it, at least at night to see if it helps me sleep better.
So comments about Gabapentin (I was just reading some in other forums) also appreciated.
Mitch

No. I live in greater St Petersburg, FL, and mine was Dr Paul Pagano at St Anthony's Hospital there.

@birdman518 Mitch, I was wondering how you are doing with your recovery? Is your pain getting better?
~Jennifer

Jennifer, thanks for thinking of me. Overall, nothing has changed. It seems impossible, but it is true. The only good news is that my C5 nerve palsy is better after 3 weeks of PT. Not 100% but it looks like it will be okay.
I go back and see my surgeon on Mar. 1, so it will be interesting to see what he says.

By "the same" I mean: numbness and tingling down my right arm, with the worst being my right hand and thumb and index finger. Sometimes bad shoulder pain. I have some now on left arm and hand that is worse than before. I still have issues with my gait and my feet and toes have sharp nerve reactions to touch.

My ACDF did NOT touch C6-C7 which is the classic cause of the radiculopathy I have in my right hand. But both surgeons did NOT indicate that that was my most pressing issue.

I am still hoping that more time will help. Otherwise it would appear that I have permanent nerve damage.

I will try and post again after next week.

Here is an update after seeing my spine surgeon on Tuesday. Basically we are still in a "it's too early" pattern, meaning that I need to wait much longer to give my nerves a chance to heal. Especially my spinal cord which was being compressed pretty badly. I am basically okay with this. My C5 nerve palsy issue is better, but remember that happened as a result of my surgery! Still I will be doing more PT going forward to help repair that.
We discussed how my inability to get MRIs (due to my pacemaker) does somewhat hinder our view of what is happening. Still remember that two surgeons independently gave me the same diagnosis and Rx after seeing my neurology reports, CT scans and myelogram.

I told him that Gabapentin did not do much for me, so he prescribed some amitriptyline. I only take it once at bedtime.. so far it seems to help me sleep but hard to tell if it is that or the diphenhydramine I take.

That's about all I can remember. I did have my problems going back at least 4 years... I concede that it is possible that some permanent damage has been done. (that is why he said we miss the MRI as it could show if that were the case). But I don't think it is unreasonable to give this more time...