1. < Spine Health

Nuchal Tendon Occification/Calcification

Posted by Wendallzmom @wendallzmom, Aug 23, 2017

I have a horizontal hard mass at C5 & C6 It can be be pushed back and forth so it can hide in between C5 & C6 Back to front movement is over its width so at least 1". Att other times you can feel in just by brushing hand over skin at C5/C6, It protrudes right to the surface of my skin or pushes straight back to align with my spine. It goes into alignment so good it does NOT show up on MRI CAT or Xray. It is slowly growing from half inch to 2" in 3 years.

You can manually feel the front and both side. Many ppl have verified shape and size a friend measured it for me. It is a rectangle that is totally horizontal measuring 2"L x 1"D X 1/4" H

It can not to be felt when laying on back for stomach, it goes back into alignment with cervical spine. It can only be felt when I am standing. I have been told the mass is calcification of my nuchal tendon, knowing that tendon is vertical it doesn't make sense to me that that it would be that the shape I feel moves around and lays horizontally.

My next step is the Mayo, I want to tell my primary what i found out. So she can refer me.

I am new, first timer, so hope i did this right

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shann14 | @shann14 | Jul 27, 2023
In reply to @justin118 "May I ask you is there any risk of removing it by surgery ? My Dr..." + (show)
@justin118

May I ask you is there any risk of removing it by surgery ? My Dr told me that it will have the risk of weakening the tendon in the long run.Is that true? How big is this surgery? I want to remove mine to get rid of the pain. Thanks. Justin

Jump to this post

I am not sure what you mean by extra piece of bone. In my personal situation it was not referred to as an extra bone. It was palpable mass. It would "disappear" or "hide" depending on the positioning of my spine. This is why the flexion/extension MRI was required. These are much different than your typical MRI. I had to go to a stand alone MRI place (thankfully insurance still covered) my local hospitals do not have the machine and from what they stated most do not. That would be my first bit of advise., Get your doctor to order the flexion/extension MRI. The findings should show "thickening of the nuchal ligament" that is the diagnosis of nuchal fibrocartilaginous pseudotumor, however a doctor must understand what that means, SEVERAL I went to had zero knowledge of this condition. A neurosurgeon is the one who diagnosed from that MRI. Unfortunately in my case, I was not diagnosed from that MRI until a couple years later. Problem being the pseudotumor continued growing for those two years and was much, much larger at the time of surgery. Definitely make sure it is a recent MRI (within 3months) that they operate off of. During surgery it was noticed that not only was pseudotumor in my nuchal ligament it also began encompassing my trap muscle, which in turn caused the surgeon to completely severe my trap. The doctors will go over benefits and disadvantages of the surgery, they have too. I cannot state your doctor is incorrect as I have now been diagnosed with cervical dystonia, which I imagine in lamens terms I would assume would be weakening of that tendon, but I don't know for sure. With all that we are experiencing it is hard to say if one pain would be worse than another. After the surgery you are supposed to attend physical therapy to strengthen your tendons and muscles again. Unfortunately for me. COVID caused physical therapy to be cancelled after only 1 visit and wasn't reinstated ever for me. I asked and was told it would no longer have beneficial results. I do not believe I am your typical case. I think i might be more so the warning of what could happen. I was told there could be complications and that there was a chance it was cancer but that the benefits outweighed any possible side effects. I was experiencing some interesting symptoms prior to surgery... including but not limited to (ass y'all know, there are so many we are feeling because this) white outs...I would get extremely dizzy and would the have same symptoms of a panic attack but in addition my vision would completely white out for minutes at a time. I wouldn't lose consciousous (that I am aware of, but I was mostly alone or with my very young children). My pupils were dilating to different sizes, that one was extremely scary. I couldn't hold food down. Then the trouble swallowing began. I'm sorry if this is confusing but I am bawling my eyes out as I write this. Because as I stated above I am at the beginning of this battle again and NO ONE is fucking listening. I am scared and in so much pain it's hard to breathe.

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shann14 | @shann14 | Jul 27, 2023
In reply to @breyn "I am wondering if I might have the same thing going on as others here. When..." + (show)
@breyn

I am wondering if I might have the same thing going on as others here. When I look up, there is a hard mass that pops out of the back of my neck around the C4 level. It feels like a bone on a rubber band. You can push the mass in and out. The mass can only be felt when I put my neck back (look up) and not when my spine is in a neutral position. It seems like whatever it is hides in the cervical spine when my neck is not back (looking up). My doc did an ultrasound and there was a dark mass there; however, the xray and MRI came back with normal results. It is quite obvious to anyone who feels my neck that there is something not normal going on when my neck is back. My doctor does not know what it is and says that since there were no findings on the xray and MRI, there isn't a lot more that can be done. Does anyone have a diagnosis and if so, is what I am describing the same as you? I'm so frustrated and really want answers. Thank you!

Jump to this post

Please ask your doctor to request a flexion/extension MRI. These are much different. Umm for me, just as a heads up...it was extremely painful, as you hold weights and lean your head/neck in different positions. Which is why they are able to finally see the pseudotumor because as we know this little effer likes to play hide and seek. I did try to not hold the weights because it was excruciating but they insisted.

Please, please make sure if you do go in for surgery that the MRI is no older than 3 months hopefully even less! As we know these can grow very slow but they also have growth spurts and seem to grow overnight sometimes.

REPLY
shann14 | @shann14 | Jul 27, 2023

Nuchal fibrocartilaginous pseudotumors are EXTREMELY rare. As of 2016 there were less than 20 cases documented. I am honestly not sure why my neurosurgeon thought it could be cancerous as I just noticed all descriptions state that it is a benign lesion. Now, I am assuming they weren't 100% confident with this diagnosis, which I cannot blame them since there is not much information however honesty goes such a long way. Because of my amazing timing lol, I wasn't told it benign until a full 3 months after surgery.

REPLY
justin118 | @justin118 | Jul 27, 2023
In reply to @shann14 "I am not sure what you mean by extra piece of bone. In my personal situation..." + (show)
@shann14

I am not sure what you mean by extra piece of bone. In my personal situation it was not referred to as an extra bone. It was palpable mass. It would "disappear" or "hide" depending on the positioning of my spine. This is why the flexion/extension MRI was required. These are much different than your typical MRI. I had to go to a stand alone MRI place (thankfully insurance still covered) my local hospitals do not have the machine and from what they stated most do not. That would be my first bit of advise., Get your doctor to order the flexion/extension MRI. The findings should show "thickening of the nuchal ligament" that is the diagnosis of nuchal fibrocartilaginous pseudotumor, however a doctor must understand what that means, SEVERAL I went to had zero knowledge of this condition. A neurosurgeon is the one who diagnosed from that MRI. Unfortunately in my case, I was not diagnosed from that MRI until a couple years later. Problem being the pseudotumor continued growing for those two years and was much, much larger at the time of surgery. Definitely make sure it is a recent MRI (within 3months) that they operate off of. During surgery it was noticed that not only was pseudotumor in my nuchal ligament it also began encompassing my trap muscle, which in turn caused the surgeon to completely severe my trap. The doctors will go over benefits and disadvantages of the surgery, they have too. I cannot state your doctor is incorrect as I have now been diagnosed with cervical dystonia, which I imagine in lamens terms I would assume would be weakening of that tendon, but I don't know for sure. With all that we are experiencing it is hard to say if one pain would be worse than another. After the surgery you are supposed to attend physical therapy to strengthen your tendons and muscles again. Unfortunately for me. COVID caused physical therapy to be cancelled after only 1 visit and wasn't reinstated ever for me. I asked and was told it would no longer have beneficial results. I do not believe I am your typical case. I think i might be more so the warning of what could happen. I was told there could be complications and that there was a chance it was cancer but that the benefits outweighed any possible side effects. I was experiencing some interesting symptoms prior to surgery... including but not limited to (ass y'all know, there are so many we are feeling because this) white outs...I would get extremely dizzy and would the have same symptoms of a panic attack but in addition my vision would completely white out for minutes at a time. I wouldn't lose consciousous (that I am aware of, but I was mostly alone or with my very young children). My pupils were dilating to different sizes, that one was extremely scary. I couldn't hold food down. Then the trouble swallowing began. I'm sorry if this is confusing but I am bawling my eyes out as I write this. Because as I stated above I am at the beginning of this battle again and NO ONE is fucking listening. I am scared and in so much pain it's hard to breathe.

Jump to this post

Thank you so much for your information, Mine can be seen it on the x-ray clearly, I will update you on my treatment progress.
Justin

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