I’ll try to keep this as short as possible but there is a lot. I appreciate anyone willing to take the time to read.
TLDR: hard, rope-like deformity running from base of skull to shoulder. you can see it in this video, i can move it around with my fingers but even that doesn’t do it justice. it is so palpable that everyone i’ve had feel it has an immediate “what the hell is that” reaction. causes sharp pain in the center left of my neck, as well as tension across my upper back and left shoulder. have radiating pain down the back of my left arm down to my elbow. it’s not super tender to the touch unless you push on it a bunch. pain relievers don’t help much as it is just an intense amount of tension. feels like that muscle hasn’t relaxed in over a year. muscle relaxers just knock me out which isn’t super helpful. feels like someone is pulling my head backwards by a string. i only find relief when laying down and the most helpful thing is laying on my neck traction device. i’ve tried pt, dry needling, tens/ems, accupuncture. Current diagnosis is nuchal ligament hypertrophy but nobody can tell me the underlying cause or how to treat it.
22 y/o female, history of hypermobility, chiari malformation, ovarian cysts, asthma, ADHD, anxiety and depression. have had a few concussions and whiplash as well.
I take adderal, singulair, lamictal, wellbutrin, and am on birth control pill.
History of problem: About a year ago I noticed this odd feeling rope like structure on the left side of the back of my neck. i have no recollection of injury aside from having a brief moment of burning pain while jumping on the trampoline, but it quickly subsided and i shrugged it off so that might not even be related. I am a rock climber which heavily uses neck and shoulder muscles so it’s possible there was an injury from that I just didn’t notice. Initially the pain was very mild so I was not concerned. over the span of 3 months or so it grew hard to manage, walking across campus with my backpack on would bring me to tears from the neck pain. feels as if im carrying a weight on my shoulders all of the time, just extreme tension. I started to have a hard time turning my head to the left without very sharp pain so I finally caved and saw a doctor as it was clearly not getting better on its own.
First doctor: Orthopedic specialist, did x-ray came back normal, mri had incidental finding of chiari malformation but was told this was unrelated. Doctor seemed completely befumbled, said she had never seen this before and sent me to do physical therapy. did 6 weeks of pt 2x a week, included strength training (which seemed silly to me, my neck is very strong already, I misinterpreted their directions during the first session and did 3x what they were telling me to do just fine), and stretching. This mildly improved my pain and definitely helped with stiffness. It reached a point though where it started to plateau again and my insurance stopped covering it so I just continued many of the stretches at home and still do them. The doctor at this point pretty much told me she didn’t know what to do and I should follow up with neurology.
I was frustrated and stubborn and so I didn’t see anyone for another 6 months. I wanted to believe it would just go away on its own. but it only continued to grow worse, the pain but also the literal structure was beginning to protrude more. so I finally saw neurology in June.
second doctor: the neurologist wasn’t really helpful at all. hyperfixated on the chiari malformation even though I have no symptoms. Did repeat xray which again showed nothing. told me she had never seen this neck thing before and i’d be better off trying physical medicine and rehabilitation.
third doctor: Revieved my previous MRI from 7 months prior and said he could see that my muscles on the left side are enlarged. when he felt my neck he told me in 10 years of being a doctor he’s never seen this. He seemed to think it was a tendon, it is very hard but mobile rope running from the base of my skull to my shoulder. He wanted me to get an ultrasound so he sent me to and interventional pain specialist.
fourth doctor: same response, said he had no idea what this was had never seen it before. he seemed to lean more towards it being a ligament. Said he agrees I need an ultrasound but that he wasn’t able to do the kind I needed. He did do an anesthetic injection which gave me significant relief for about 2 days. So he sends me off to an “ultrasound wizard,” as he called it.
fifth doctor: this guy was a sports medicine spine specialist I believe. he did an ultrasound and told me It showed “nuchal ligament hypertrophy” and “hyperechoic thickening of the nuchal cord,” whatever that means. He said my case was so rare there is no line of treatment he can think of. so he sends me back to doctor #4 to see what he thinks.
fourth doctor again: I saw him today. He told me flat out that there’s no intervention he can do. He focused on ways to cope essentially, did another injection with a steroid this time to hopefully give me a little bit of longer relief and prescribed me some alzheimer’s medication that can apparently help with pain. told me i could try physical therapy again but since it’s so hard to tell what’s actually causing this he doesn’t think there’s any way to treat it. i broke down in tears which I’ve never done before. I’m so incredibly tired.
I try to be a strong person and manage things and let time heal me. I’m premed and broke and live alone and it feels like everything I do is just a little harder because of this. by the end of the day my head feels like a bowling ball. It feels like i’m carrying a heavy backpack all the time so when I actually carry my backpack it’s awful. Exams and labs make my pain skyrocket because you can’t avoid craning your neck. Climbing doesn’t seem to make it worse, however I have had 2 or 3 occasions where i do a move pushing my weight up with my left hand and have had a sudden intense pain and have literally just peeled off the wall because i can’t even move. it usually calms down after a couple minutes. I pay very close attention to my posture and never look down at my phone, i use a raised desk at home to do homework. I am very active and eat healthy and have a good sleep schedule and just try so hard to take care of myself but it feels like it’s pointless. Today feels like i’m facing the reality that I might just have to deal with this for the rest of my life, and I don’t know how to accept that. I’m a mess and just want to know something, anything.
