Confused

Posted by sllee @sllee, Jan 11, 2023

Had C6C7 disc removed in 2000. I have received different readings of X-rays/MRI. Can a disc grow back? One looked like C6 fell onto C7. Now my doctor is saying it’s fused good. This doctor just fused C4-C6 and I’m getting pain at shoulder level. I was told by my first doctor the cadaver bone was gone now it looks like it’s there but not where he put it. It makes me feel like I’m stupid.

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@sllee Hello and welcome to Connect. I am also a cervical fusion patient having had C5/C6 fused 6 years ago. Bone is always in a state of being reabsorbed and rebuilt. Recently I heard a doctor say that 10% of bone was undergoing this change all the time. Bone also remodels because of pressure, so it can change shape. For example, I fractured my ankle badly a few years ago and had snapped the fibula which is the bone on the outside. It has healed back together, but there is a ridge that I can feel with my fingers where the parts joined back together.

With a spinal fusion, the surgeon grinds the end plates of the vertebrae to make them flat, so they can match up against other parts like the bone disc spacer. This also creates an "injury" so the body responds by trying to heal the injury and grows new bone. I had bone spurs inside the central canal prior to my spine surgery, and that is the site of the fusion. There is a tiny bone bump there now where the bone spur used to be. The bone growth eventually extends past the bone disc spacer out to the outer edges on the vertebrae and it may take a few years.

Spinal discs do not regrow. During development, they have a blood supply, but after the spine is fully formed that supply is lost. Regenerative medicine spine researchers are working on how to regenerate discs. If that were possible it could replace spinal fusions as treatment.

Shoulder and scapular pain kind of goes with cervical spine issues. Muscles connect the scapula (shoulder blade) to the spine and are necessary in order to raise the arm. When you get muscle spasms from a spine injury or condition, that can pull on other muscles also attached to those vertebrae.

Does that help? I know sometimes it's hard to ask questions of the doctor if they seem to not be very receptive to questions. They are used to talking to each other in their medical terminology which is like another language, and they can forget that not all patients have the same level of understanding. That can go another way if a patient understands medical terminology and asks questions using correct medial terms. I think that can make a doctor uncomfortable and they may assume that a patient is using words they found on the internet in order to challenge them, but without understanding them. I understood a lot and I used correct terminology when speaking to one of the surgeons who saw me, and his nurse was a bit adversarial toward me, and it was clear to me that she misunderstood symptoms that were related to my spine condition. My symptoms were unusual and fooled several surgeons before I came to Mayo as a surgical patient. I think it is a distraction to the doctor who is used to being the only "smart one" in the room. My physical therapist said it's best to let them be the "brain" in the room. Some surgeons have egos and need to feel they are the expert and others are more down to earth and very willing to explain the imaging. They also have a fine line because if they say too much, they can cause a lot of anxiety for the patient, so they try to use simple language when explaining things. My opinion is that a surgeon should be willing to answer patient questions about their treatment. If you don't understand their answers, you can ask what they meant, and that's OK. Patients are not expected to have medical knowledge.

REPLY
@jenniferhunter

@sllee Hello and welcome to Connect. I am also a cervical fusion patient having had C5/C6 fused 6 years ago. Bone is always in a state of being reabsorbed and rebuilt. Recently I heard a doctor say that 10% of bone was undergoing this change all the time. Bone also remodels because of pressure, so it can change shape. For example, I fractured my ankle badly a few years ago and had snapped the fibula which is the bone on the outside. It has healed back together, but there is a ridge that I can feel with my fingers where the parts joined back together.

With a spinal fusion, the surgeon grinds the end plates of the vertebrae to make them flat, so they can match up against other parts like the bone disc spacer. This also creates an "injury" so the body responds by trying to heal the injury and grows new bone. I had bone spurs inside the central canal prior to my spine surgery, and that is the site of the fusion. There is a tiny bone bump there now where the bone spur used to be. The bone growth eventually extends past the bone disc spacer out to the outer edges on the vertebrae and it may take a few years.

Spinal discs do not regrow. During development, they have a blood supply, but after the spine is fully formed that supply is lost. Regenerative medicine spine researchers are working on how to regenerate discs. If that were possible it could replace spinal fusions as treatment.

Shoulder and scapular pain kind of goes with cervical spine issues. Muscles connect the scapula (shoulder blade) to the spine and are necessary in order to raise the arm. When you get muscle spasms from a spine injury or condition, that can pull on other muscles also attached to those vertebrae.

Does that help? I know sometimes it's hard to ask questions of the doctor if they seem to not be very receptive to questions. They are used to talking to each other in their medical terminology which is like another language, and they can forget that not all patients have the same level of understanding. That can go another way if a patient understands medical terminology and asks questions using correct medial terms. I think that can make a doctor uncomfortable and they may assume that a patient is using words they found on the internet in order to challenge them, but without understanding them. I understood a lot and I used correct terminology when speaking to one of the surgeons who saw me, and his nurse was a bit adversarial toward me, and it was clear to me that she misunderstood symptoms that were related to my spine condition. My symptoms were unusual and fooled several surgeons before I came to Mayo as a surgical patient. I think it is a distraction to the doctor who is used to being the only "smart one" in the room. My physical therapist said it's best to let them be the "brain" in the room. Some surgeons have egos and need to feel they are the expert and others are more down to earth and very willing to explain the imaging. They also have a fine line because if they say too much, they can cause a lot of anxiety for the patient, so they try to use simple language when explaining things. My opinion is that a surgeon should be willing to answer patient questions about their treatment. If you don't understand their answers, you can ask what they meant, and that's OK. Patients are not expected to have medical knowledge.

Jump to this post

@jenniferhunter

I would like to ask a couple of quick questions regarding bone regrowth after a lumbar fusion. I have asked several doctors these questions and I have searched the internet for answers. There doesn't seem to be any definite answers.

I'm have "abnormal" bone growth in my lumbar spine. One surgeon said he would remove several facet joints which would destabilize my lumbar spine and then a fusion would be done. I suspect the facet hypertrophy was the result of chronic inflammation due to an autoimmune disorder and NOT trauma related. Whatever happened has caused severe spinal stenosis.

I seem to have more bone than I need in many places. I took prednisone for a long time to control abnormal inflammation which liked to attack my spine. I'm off prednisone now and take a biologic instead of prednisone. Unfortunately the biologic needs to be stopped to do the fusion. I'm wondering how inflammation will be controlled if I'm not taking anything to control inflammation???

My other question pertains to another problem. I had knee replacements done 5 years ago. The prosthetic knee joints look fine but now I have extensive bone formation in the soft tissues around my knee joint. The condition is called heterotopic ossification. The condition is somewhat common but nothing much can be done because more surgery could make it worse.

https://my.clevelandclinic.org/health/diseases/22596-heterotopic-ossification#:~:text=Heterotopic%20ossification%20(HO)%20occurs%20when,restrict%20your%20range%20of%20motion.

I don't think I need any extra bone formation in my lumbar spine! My DEXA scan in that area is about +5 but the surgeon says it probably isn't "good bone."

I'm just wondering what you think about me doing a lumbar fusion with these kinds of problems. The surgeon says something needs to be done sooner rather than later.

REPLY
@dadcue

@jenniferhunter

I would like to ask a couple of quick questions regarding bone regrowth after a lumbar fusion. I have asked several doctors these questions and I have searched the internet for answers. There doesn't seem to be any definite answers.

I'm have "abnormal" bone growth in my lumbar spine. One surgeon said he would remove several facet joints which would destabilize my lumbar spine and then a fusion would be done. I suspect the facet hypertrophy was the result of chronic inflammation due to an autoimmune disorder and NOT trauma related. Whatever happened has caused severe spinal stenosis.

I seem to have more bone than I need in many places. I took prednisone for a long time to control abnormal inflammation which liked to attack my spine. I'm off prednisone now and take a biologic instead of prednisone. Unfortunately the biologic needs to be stopped to do the fusion. I'm wondering how inflammation will be controlled if I'm not taking anything to control inflammation???

My other question pertains to another problem. I had knee replacements done 5 years ago. The prosthetic knee joints look fine but now I have extensive bone formation in the soft tissues around my knee joint. The condition is called heterotopic ossification. The condition is somewhat common but nothing much can be done because more surgery could make it worse.

https://my.clevelandclinic.org/health/diseases/22596-heterotopic-ossification#:~:text=Heterotopic%20ossification%20(HO)%20occurs%20when,restrict%20your%20range%20of%20motion.

I don't think I need any extra bone formation in my lumbar spine! My DEXA scan in that area is about +5 but the surgeon says it probably isn't "good bone."

I'm just wondering what you think about me doing a lumbar fusion with these kinds of problems. The surgeon says something needs to be done sooner rather than later.

Jump to this post

@dadcue I know seeking an answer can be tough when your doctors don't really have enough information on how to prevent heterotopic ossification. I have been looking for research papers trying to find information that could help. Here are some of my thoughts, and perhaps it may lead to asking specific questions of your medical providers. I am not a trained medical professional, but I have knowledge because of a background in biology, having worked in scientific research, and what I have learned as a patient from my experiences with surgeries and physical therapy. I will list some links at the end where you can read about research involving HO.

Generally, I've learned that there is an inflammatory process that happens during the formation of extra bone as you've also said, but a few other things also caught my attention. Bone formation happens as a sequence of changes that first create cartilage that is later replaced by bone, and inflammation is part of that process to set the stage for creating new bone.

Sometimes surgeons are using bone morphogenic proteins as a kind of "cement" during surgery and that can be linked to a higher risk for heterotopic ossification (HO) and this is used in some spine surgery.

Spine surgeons also speak about excess pressure causing bone remodeling in the spine, and if I were to take a guess, I would think that scar tissue that forms in the fascial layers because of surgery and the surgical path, could also increase pressure in those tissues and may perhaps increase the risk of HO because the scar tissue may connect directly to the spine via the surgical path. This is why surgeons want knee replacement patients to begin walking right away to prevent formation of restrictive scar tissue. Some papers mention that over aggressive manipulation of limbs after joint replacement could be involved in causing additional trauma to the limbs, that could initiate HO as it heals and forms scar tissue.

I do therapy involving the fascia called myofascial release. This is a gentle way to stretch fascia and allow it to remodel and you have to hold a gentle shearing pressure and wait. The fascia undergoes a change from a semi solid to a liquid like consistency and the facial fibers unwind and and become more mobile. If you are too aggressive in stretching fascia, it will tear and form scar tissue that just adds to the problem causing further restriction. With gentle facial stretching and patience, a patient can restore better body movement by removing tight restrictions that run through the body. My PT has worked on and stretched my surgical scars to help release this tightness. If you keep the fascia moving and sliding on itself, it keeps fluids circulating, and proper electrical conduction in the fascia itself as well as releasing any stored waste products. Some of the literature stated that HO was common among spinal cord injury and head trauma patients and the hypothesis was that HO can form when electrical signaling is lost to the tissues resulting from nerve damage. Restricted fascia is dehydrated and may no longer conduct electric signals. Some doctors embrace myofascial release therapy and others haven't heard of it. In medical school , they study dead tissues in cadavers that have lost all the properties of living fascia, so perhaps they don't think about it.

This video demonstrates how living fascia unwinds and reorganizes.
"Strolling Under the Skin" by Dr. Jean-Claude Guimberteau

So I wonder if myofascial release could help prevent HO? Some other considerations of course are how much movement is allowed post op after a spine procedure. I had a fusion with only a bone graft and no hardware, and had to stay immobile in a hard collar until the fusion process started which was 3 months. My PT was not allowed to do any MFR during that time, but after when I began rehab for weakened neck muscles because of immobilization, we also did MFR and it helped relieve pain by removing pressure. I had also done MFR before surgery so my tissues would be more pliable and easier to retract, making the surgeon's job a bit easier.

Here is our MFR discussion with lots of links to information:

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There is a provider search at http://mfrtherapists.com/

Here are links to some literature that I found about heterotopic ossification:

Medical Hypotheses
Volume 68, Issue 1, 2007, Pages 67-73
"The function of proprioceptors in bone organization: A possible explanation for neurogenic heterotopic ossification in patients with neurological damage"
https://www.sciencedirect.com/science/article/abs/pii/S0306987706004932

J Musculoskelet Neuronal Interact 2012; 12(4):230-240
Heterotopic ossification following traumatic brain injury
and spinal cord injury: insight into the etiology and
pathophysiology
https://ismni.org/jmni/pdf/50/06SAKELLARIOU.pdf

The Journal of Bone and Joint Surgery. British volumeVol. 90-B, No. 12
"Heterotopic ossification after the use of commercially available recombinant human bone morphogenetic proteins in four patients"
https://online.boneandjoint.org.uk/doi/full/10.1302/0301-620X.90B12.20975

So my question is this.... if you did myofascial release with a therapist to prepare yourself for spine surgery ahead of time, and also after surgery when appropriate, could you prevent the HO from happening? This may be something to discuss with your surgeon.

REPLY
@jenniferhunter

@dadcue I know seeking an answer can be tough when your doctors don't really have enough information on how to prevent heterotopic ossification. I have been looking for research papers trying to find information that could help. Here are some of my thoughts, and perhaps it may lead to asking specific questions of your medical providers. I am not a trained medical professional, but I have knowledge because of a background in biology, having worked in scientific research, and what I have learned as a patient from my experiences with surgeries and physical therapy. I will list some links at the end where you can read about research involving HO.

Generally, I've learned that there is an inflammatory process that happens during the formation of extra bone as you've also said, but a few other things also caught my attention. Bone formation happens as a sequence of changes that first create cartilage that is later replaced by bone, and inflammation is part of that process to set the stage for creating new bone.

Sometimes surgeons are using bone morphogenic proteins as a kind of "cement" during surgery and that can be linked to a higher risk for heterotopic ossification (HO) and this is used in some spine surgery.

Spine surgeons also speak about excess pressure causing bone remodeling in the spine, and if I were to take a guess, I would think that scar tissue that forms in the fascial layers because of surgery and the surgical path, could also increase pressure in those tissues and may perhaps increase the risk of HO because the scar tissue may connect directly to the spine via the surgical path. This is why surgeons want knee replacement patients to begin walking right away to prevent formation of restrictive scar tissue. Some papers mention that over aggressive manipulation of limbs after joint replacement could be involved in causing additional trauma to the limbs, that could initiate HO as it heals and forms scar tissue.

I do therapy involving the fascia called myofascial release. This is a gentle way to stretch fascia and allow it to remodel and you have to hold a gentle shearing pressure and wait. The fascia undergoes a change from a semi solid to a liquid like consistency and the facial fibers unwind and and become more mobile. If you are too aggressive in stretching fascia, it will tear and form scar tissue that just adds to the problem causing further restriction. With gentle facial stretching and patience, a patient can restore better body movement by removing tight restrictions that run through the body. My PT has worked on and stretched my surgical scars to help release this tightness. If you keep the fascia moving and sliding on itself, it keeps fluids circulating, and proper electrical conduction in the fascia itself as well as releasing any stored waste products. Some of the literature stated that HO was common among spinal cord injury and head trauma patients and the hypothesis was that HO can form when electrical signaling is lost to the tissues resulting from nerve damage. Restricted fascia is dehydrated and may no longer conduct electric signals. Some doctors embrace myofascial release therapy and others haven't heard of it. In medical school , they study dead tissues in cadavers that have lost all the properties of living fascia, so perhaps they don't think about it.

This video demonstrates how living fascia unwinds and reorganizes.
"Strolling Under the Skin" by Dr. Jean-Claude Guimberteau

So I wonder if myofascial release could help prevent HO? Some other considerations of course are how much movement is allowed post op after a spine procedure. I had a fusion with only a bone graft and no hardware, and had to stay immobile in a hard collar until the fusion process started which was 3 months. My PT was not allowed to do any MFR during that time, but after when I began rehab for weakened neck muscles because of immobilization, we also did MFR and it helped relieve pain by removing pressure. I had also done MFR before surgery so my tissues would be more pliable and easier to retract, making the surgeon's job a bit easier.

Here is our MFR discussion with lots of links to information:

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There is a provider search at http://mfrtherapists.com/

Here are links to some literature that I found about heterotopic ossification:

Medical Hypotheses
Volume 68, Issue 1, 2007, Pages 67-73
"The function of proprioceptors in bone organization: A possible explanation for neurogenic heterotopic ossification in patients with neurological damage"
https://www.sciencedirect.com/science/article/abs/pii/S0306987706004932

J Musculoskelet Neuronal Interact 2012; 12(4):230-240
Heterotopic ossification following traumatic brain injury
and spinal cord injury: insight into the etiology and
pathophysiology
https://ismni.org/jmni/pdf/50/06SAKELLARIOU.pdf

The Journal of Bone and Joint Surgery. British volumeVol. 90-B, No. 12
"Heterotopic ossification after the use of commercially available recombinant human bone morphogenetic proteins in four patients"
https://online.boneandjoint.org.uk/doi/full/10.1302/0301-620X.90B12.20975

So my question is this.... if you did myofascial release with a therapist to prepare yourself for spine surgery ahead of time, and also after surgery when appropriate, could you prevent the HO from happening? This may be something to discuss with your surgeon.

Jump to this post

Thank-you very much for all of the information. I will need to study it more. I can relate to much of it. I don't understand everything except to acknowledge how complicated it is.

I have a nursing background in neurology/neurosurgery. I never fully appreciated how integrated the nervous system is with every other system in the body. I never imagined becoming a neurosurgery patient.

My rheumatologist sometimes says I have "systemic inflammation" and other times says that I have a "full range" of rheumatology problems. As a patient, I try to avoid the neurology/neurosurgery aspects of medicine although that is becoming harder to do. I have diffuse peripheral neuropathy which is enough all by itself.

The pain of trigeminal neuralgia was over the top. The facial electricity was mercifully stopped after microvascular decompression (MVD) surgery. Unfortunately the neurosurgeon couldn't completely separate a large vein "traversing through" my trigeminal nerve. The amount of dissection that was needed left the left side of my face numb and tingling including my eye. Now my ophthalmologist is worried about neurotrophic keratitis.

Radicular leg pain was comparable to trigeminal neuralgia. The acute neurological changes of foot drop and leg weakness sent me right back to the neurosurgeon who did the MVD surgery. I would have consented to leg amputation except that prednisone stopped the pain. That same neurosurgeon couldn't believe I only took prednisone for trigeminal neuralgia. That neurosurgeon referred me to God when I asked how a large vein got tangled up with my trigeminal nerve.

The HO was discovered by my rheumatologist when she pressed on a small spot on my knee. She wasn't sure if I needed to be seen by neurology or the orthopedic surgeon because of having knee replacements. She described that spot as "exquisitely painful" which was the first time I ever heard of pain being described that way. Apparently there is some bone that shouldn't be where it is and it is pressing on a nerve. The best recommendation they could give me was that I shouldn't touch that spot!

I'm thinking more and more that I shouldn't do the lumbar fusion. Seems like there are way too many nerves and bones to mess around with. There seems to be too many unknowns about all the connective tissue that is involved too. I have already had an idiopathic tendon rupture. I have only been diagnosed with reactive arthritis, uveitis, PMR and possible arachnoiditis. I'm thinking maybe some mixed connective tissue disease (MCTD) too.

All in all, I'm doing well and I feel better than I have in years. I read somewhere that prednisone only controls the inflammatory pain but doesn't prevent the damage caused by chronic inflammation. I'm thinking that might be true in my case. I don't know exactly what my biologic is doing but I think it may have actually stopped the inflammation . Maybe the problem is solved and my spine won't get any worse.

I truly appreciate your response ... thank-you again. I have read some of your other responses to other people and I think they are fantastic!

REPLY

What other options have you been offered for treatment or is surgery it?

REPLY

The important thing to remember is to ask questions and keep asking them until you are satisfied with the answer. As Jennifer stated your not expected to know about medicine or medical problems. But you are expecting to have all your questions answered.

REPLY
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