1. < Spine Health

PJK: I can feel my rod through my neck. Should I be worried?

Posted by nicholaspohla @nicholaspohla, Aug 5 9:46am

For context. This is the rod from my second surgery. My first surgery fell apart because my kyphosis continued to progress above where they finished the surgery causing my neck to dislocate and the screws starting to be pulled out of my spine because of the dislocation and my spinal cord being pinched from the dislocation and whatnot. When we finally realized what was happening I noticed the rod sticking out through my back cause of the screws being dislodged fro my spine. The second surgery went up 2 more vertebrae into my neck so now I'm fused up and have rods from C7-S1. With what happened the first time I've been very defensive and aware of everything happening in my body. This isn't the first time I've noticed the rod sticking out through neck after the second surgery either. My surgeon said that I would be able to feel it because I'm a pretty skinny guy and I don't have a lot of fat or muscle around that area and because of that I can feel all the stuff they put in from the surgery. He said not to be worried unless I feel excruciating pain, feel like something is loose, or progressively start to feel any of the symptoms from last time (loss of control over bladder or bowel movements, restless feet, feet feeling cold or hot when it actually isn't, numbness and tingling, loss of balance, etc). Going through this checklist has usually been able to calm myself over the last 9 months since my surgery. But the past few days I've noticed the rod sticking through my neck feels a bit more extreme than usual and I have a tiny bit more pain than usual in my neck as well. Not too much more pain but there is a little bit more pain. I asked my brother if he noticed it at first glance without trying to find it and he said he could see it but it definitely isn't as extreme as the rod sticking out last time when the screws were coming loose. I don't feel anything the doctor warned about but something just feels off. I don't know how to explain it. I haven't had an appointment in like 2 months and won't have another one until the 1 year out appointment. This is also around the same time when symptoms started showing up after my first surgery in my recovery timeline. Is this something I should be worried about or is it just my body overreacting cause of the traumatic experience I had starting around this time after my first surgery?

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 5 11:56am

@nicholaspohla Hello and welcome to Connect. What you've described in your 2 spine fixation surgeries is called "Proximal Junction Kyphosis" or "PJK" in medical terms where the top end of the hardware construct with the rods can become loose, and your body kind of falls forward with more kyphosis and "falling" away from the rods. I had spoken with another member here on Connect who also had PJK and is having revision surgery very soon. She had taken a side view photo of herself standing and it did show lumps under the skin on her back where the top end of the hardware was pushing upward.

It sounds like you are 4 months from your one-year follow up with the surgeon, right? I don't think you are being defensive; I would say vigilant and ready to advocate for yourself. Your surgeon doesn't live with and have personal experience with what you are experiencing, and his words were meant to ease your stress. It's a very human response to be traumatized by big surgeries. Many spine patients feel this too.

The C7 vertebrae is the bone at the base of your neck that sticks out the farthest because the spinal processes on it are bigger. With the top of your rod attached there, I don't know if the hardware would be only felt with your hands or seen under the skin. For a while, I had plates on my ankle after fracturing it, and I could see and feel it stick out a bit where it was attached on the bone.

If you have increasing pain, that is a valid reason to ask your surgeon about it even though he told you everything was fine. A simple X-ray with different neck positions could answer the question if there is any movement of hardware.

You've also had 2 surgeries that cut into the same area and created scar tissue. Scar tissue gets tight and can cause pain. Even though your spine mobility is limited by spinal hardware, you can stretch out the scar tissue with a special technique called myofascial release. My physical therapist has done this a lot with me, and it can loosen surgical scar tissue. I regularly do my own stretching at home from what I've learned. The fascia is cobweb like stuff that connects everything in your body, and it is between every muscle cell. Your muscles can be bound up and tight and the fascial tightness will just pull right to the surgical area causing extra pressure. The fascia was cut during surgery and does form scar tissue. If you find a PT who also does myofascial release, you can loosen the tightness, and you would have someone to discuss the physical issues of the hardware. They would be able to put their hands on it and possibly feel if it is secure.

Below is the link to our discussion on Myofascial Release. You can find more information at https://myofascialrelease.com/. There is a provider search link from that website. (temporarily, the search was not working today, so check back later)

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Your questions are valid, and your surgeon should listen. You can also ask for myofascial release therapy to help release the scar tissue.

Your thoughts?

REPLY
1 reply
nicholaspohla | @nicholaspohla | Aug 5 1:13pm
In reply to @jenniferhunter "@nicholaspohla Hello and welcome to Connect. What you've described in your 2 spine fixation surgeries is..." + (show)
@jenniferhunter

@nicholaspohla Hello and welcome to Connect. What you've described in your 2 spine fixation surgeries is called "Proximal Junction Kyphosis" or "PJK" in medical terms where the top end of the hardware construct with the rods can become loose, and your body kind of falls forward with more kyphosis and "falling" away from the rods. I had spoken with another member here on Connect who also had PJK and is having revision surgery very soon. She had taken a side view photo of herself standing and it did show lumps under the skin on her back where the top end of the hardware was pushing upward.

It sounds like you are 4 months from your one-year follow up with the surgeon, right? I don't think you are being defensive; I would say vigilant and ready to advocate for yourself. Your surgeon doesn't live with and have personal experience with what you are experiencing, and his words were meant to ease your stress. It's a very human response to be traumatized by big surgeries. Many spine patients feel this too.

The C7 vertebrae is the bone at the base of your neck that sticks out the farthest because the spinal processes on it are bigger. With the top of your rod attached there, I don't know if the hardware would be only felt with your hands or seen under the skin. For a while, I had plates on my ankle after fracturing it, and I could see and feel it stick out a bit where it was attached on the bone.

If you have increasing pain, that is a valid reason to ask your surgeon about it even though he told you everything was fine. A simple X-ray with different neck positions could answer the question if there is any movement of hardware.

You've also had 2 surgeries that cut into the same area and created scar tissue. Scar tissue gets tight and can cause pain. Even though your spine mobility is limited by spinal hardware, you can stretch out the scar tissue with a special technique called myofascial release. My physical therapist has done this a lot with me, and it can loosen surgical scar tissue. I regularly do my own stretching at home from what I've learned. The fascia is cobweb like stuff that connects everything in your body, and it is between every muscle cell. Your muscles can be bound up and tight and the fascial tightness will just pull right to the surgical area causing extra pressure. The fascia was cut during surgery and does form scar tissue. If you find a PT who also does myofascial release, you can loosen the tightness, and you would have someone to discuss the physical issues of the hardware. They would be able to put their hands on it and possibly feel if it is secure.

Below is the link to our discussion on Myofascial Release. You can find more information at https://myofascialrelease.com/. There is a provider search link from that website. (temporarily, the search was not working today, so check back later)

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Your questions are valid, and your surgeon should listen. You can also ask for myofascial release therapy to help release the scar tissue.

Your thoughts?

Jump to this post

I don't think the surgeon is being dismissive really. I was going in like every month right after the surgery to get xrays done to see and I would always ask all these questions after seeing that the xrays were all good and everything was going as planned. After the 7 month appointment my surgeon and dad kind of convinced me that everything was fine and they said that anything happening after the 6 month mark is very rare. But everything that happened after the first surgery happened after the 6 month mark as well so that's always in the back of my mind. I've been doing Schroth therapy for physical also ever since coming home for the summer that I just got discharged from a couple weeks ago. I've also been doing physical therapy since around March as well just not the specific Schroth spine specific physical therapy. I think the myofascial release would be beneficial though because my neck is super tight and has been ever since the surgery. I think just the combination of knowing last time everything happened around this time in my recovery timeline and not getting to see an xray and seeing everything is fine and having that reassurance every month like I did at the beginning is messing with my head ya know?

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Aug 5 2:05pm
In reply to @nicholaspohla "I don't think the surgeon is being dismissive really. I was going in like every month..." + (show)
@nicholaspohla

I don't think the surgeon is being dismissive really. I was going in like every month right after the surgery to get xrays done to see and I would always ask all these questions after seeing that the xrays were all good and everything was going as planned. After the 7 month appointment my surgeon and dad kind of convinced me that everything was fine and they said that anything happening after the 6 month mark is very rare. But everything that happened after the first surgery happened after the 6 month mark as well so that's always in the back of my mind. I've been doing Schroth therapy for physical also ever since coming home for the summer that I just got discharged from a couple weeks ago. I've also been doing physical therapy since around March as well just not the specific Schroth spine specific physical therapy. I think the myofascial release would be beneficial though because my neck is super tight and has been ever since the surgery. I think just the combination of knowing last time everything happened around this time in my recovery timeline and not getting to see an xray and seeing everything is fine and having that reassurance every month like I did at the beginning is messing with my head ya know?

Jump to this post

@nicholaspohla The mind is very powerful. Our brains are hardwired to react to danger and when your brain learns that your first surgery caused trouble, it goes straight into trying to avoid that problem again. Can you get your brain to accept and believe the results of all your X-rays? All you need is a little bit of pain, and your mind runs away with it. Take a deep breath.

I'm glad your surgeon has done the imaging to calm your nerves and answer your questions. What you have now is an opportunity to educate others about this condition and what it is like for you and how you are progressing in your recovery.

Can you tell me what is different about the Schroth Therapy from traditional physical therapy?

You may also like this discussion about overcoming fear. I was there too.

Just Want to Talk - "How can I defeat my anxiety about medical tests and surgery?"
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/

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