Spinal cord flattening

@amysterytou
You have cervical myelopathy (I do, too). What levels are your spinal cord being compressed/injured?

If you do not get treatment right away, it can cause permanent spinal cord injury and symptoms. I had ACDF surgery on c5-c6 in 2022 and need c6-c7 done soon this year.

Cervical myelopathy when symptoms get to your point most likely require surgery to decompress your spinal cord.

It would be good for you to see an orthopedic spine specialist or neurosurgeon and neurologist for evaluation and imaging/EMG and nerve conduction testing asap.

1. https://my.clevelandclinic.org/health/diseases/cervical-myelopathy
2. https://www.hopkinsmedicine.org/health/conditions-and-diseases/cervical-myelopathy
3. https://duckduckgo.com/?q=cervical%20myelopathy%20symptoms+site:www.physio-pedia.com
4. https://www.healthline.com/health/bone-health/cervical-myelopathy-symptoms

I had same thing and surgery. Sadly permanent weakness and difficulty walking.

@amysterytou Would you be able to share how you came to have this diagnosis of spinal cord flattening? What recommendation are you getting from your provider? I'm glad you are getting suggestions here. I had some spinal cord compression and had surgery early enough to have a full recovery. The danger is that when compression has gone on for a long time, the nerves within the spinal cord and nerve roots can die and disappear. Generally speaking, results are better when decompression addresses this before permanent damage. Without surgery, the deterioration continues that can led to permanent disability or paralysis.

Are you considering spine surgery? What are your thoughts?

MRI’s of cervical and thoracic both state spinal cord flattening. I went back to Neurosurgeon who did C-spine surgery. Brought MRI’s with me. I also brought MRI of L spine. my question to him was “which one of these areas is affecting my ability to walk and causing weakness in my arms”? Got no answer he had X-ray tech take X-rays of my lower back. His nurse wanted to know why I didn’t go back to ortho??? Neuro told me to go back to pain management. My husband said “this man treated you so disrespectful, indifferent he doesn’t care if you die!” Btw the neuro surg is ghosting me he had my username on patient portal changed. I cannot change it back to what it was originally. Then he wrote he was “my second opinion on chart”. I’m in bad area of the country for healthcare. Most people here leave and go to Duke, Emory or Johns Hopkins.

@amysterytou I’m sorry this doctor doesn’t want to help you. I have been through that too and it’s discouraging. I do think you should find a good specialist elsewhere and start fresh. Cervical cord flattening can affect the entire body and can cause difficulty walking. If a surgeon doesn’t know that , look elsewhere. If you Google “funicular pain” you can find medical literature on this. 5 surgeons missed that in me. Clearly you need help as your condition will likely get worse, so don’t let that difficult experience stop you. You need to take charge of finding a good specialist. It is worth traveling for a good surgeon.

Thank you for sharing your experience with me. I have family by Barrows Clinic in Phx and Mayo is there Al so. I need to find out if Mayo would want me to go a different clinic other than the one in PHX. I will keep you posted.

@amysterytou Cord flattening is often a sign of circumferential spinal cord compression, which usually leads to severe cervical myelopathy. I have it in my cervical spine at C3-C4. It occurs when the spinal cord is compressed from all sides, leading to significant pressure on the nerves.

It sounds like you may live in the south or Mid-Atlantic by your reference to Duke, Emory, or JHU. I live in the Raleigh-Durham area of NC and I am having my spine surgeon at Emory in Atlanta. I highly recommend you see a spine surgeon that specializes in cervical procedures. The level of expertise and experience in cervical procedures makes all the difference in your outcome and recovery. In my case, I choose experience of surgeon over the convenience of closest provider.

Dr John Rhee at Emory is such a spine surgeon, as well as Dr. Heller at Emory. I know there are a couple good ones at Johns Hopkins, such as Dr. Sang Hun Lee who is the Director of Complex Cervical Spine and Spine Tumor Surgery.

But I’ve been very disappointed with the spine surgeons and clinical practice at Duke (even though it’s close by and I am a Duke alum). It takes forever to see a doctor - like 6 month wait to get an appointment. And they spend very little time with you in consultation. A frustrating healthcare bureaucracy.

And there is always Dr. Daniel Riew in NYC at Weill Cornell/Columbia. He is the preeminent cervical spine surgeon in the U.S., if not the world.

Dr. Rhee at Emory is doing my surgery in 10 days. He and his team have been fantastic in all elements from my initial surgical consultation (where Dr. Rhee spent an hour discussing my situation) to guiding through all the pre-op activities. I trust him and his team.

@amysterytou Well good for you! Barrow is a good place too. You probably can decide which Mayo campus you want to go to unless it is an insurance issue. I suggest calling each place you are checking out an ask if you're covered in network with your insurance first just in case it's not available to you. If you do need help in recovery after surgery, and you can stay with family for that, it sounds like a bonus. You can also go to the main Mayo campus in Rochester where they have the most spine surgeons. I would look at surgeon profiles and do some research on them before you decide. You can select who you want to see. I will look forward to hearing about your journey.

I also had ACDF c5-c6 & c6- c7 and unfortunately it did not relieve any of my pain, I mean 0. It's been a year and I'm still not back to work and recently applied for social security disability at 45 🥹. Today out of no where I got excruciating pain in my lower back going down my leg. Can barely walk. Spinal pain is no joke and I'm sorry for everyone who is enduring it

Hello and welcome to Connect. You are in a difficult place with the medical examiner who represents your employer. It is their job to discredit your work injury because they don't want to pay your claims. It's all about profit for the company. They may be self insured which means they directly pay your work related medical bills instead of their work comp insurance and a spine injury may require very expensive surgery or cause paralysis even later in life if left untreated. If an insurance company pays the claims, their rates may go up because of the cost of claims. I would suggest consulting a spine specialist of your choosing if you have not done so, and don't sign off on anything without legal counsel. Also know that the representatives for your company will search online for social media to see what you say about your injury. It is best not to use your real name or photo or share medical information connected to your identity online. You may if you wish have your post edited or removed or change your online identity here. Our director of Connect can help with that.

If you want help with changing your post or user account, you can use this link to fill out a form https://connect.mayoclinic.org/contact-a-community-moderator/

My spine injury was a traffic accident whiplash that caused bulging discs in my neck and lower spine. I was about your age and very afraid of spine surgeons and my doctors just used a wait and see approach. The injury creates muscles spasms and that changes the load distribution on your spine alignment if spasms move the vertebrae around. Discs that bulge can herniate later, even years later, and that tends to grow bone spurs around those areas as the body tries to stabilize the spine. I told myself I would be fine, but about 20 years later my C5 C6 ruptured just by turning my head while stretching. A bulge is a weak area, and with aging, discs naturally dry out which can separate the damaged outer fibrous layer causing a herniation that spills out the internal jelly like nucleus. A couple years after that, I had bone spurs that started touching my spinal cord inside the spinal canal and surgery was needed if I wanted my spinal cord to function correctly and my surgery was several years ago. I didn't understand any of this when I was younger.

There are many spine surgeons who won't operate on thoracic levels because of the complication of your lungs being in the way. The surgeons who are skilled there would be deformity specialists. My surgery was done at Mayo by Jeremy Fogelson who is a deformity specialist. Another consideration for you is that an injury like this can limit what you can do to work for a living and you have to consider possible loss of earning potential for your lifetime. You are not quite a year since your injury and you may want to check on the statute of limitations for your state if you want to file a work comp claim with your state. Your employer hopes you give up and they will waste your time while the clock is running. You're not alone. I hope my words will give you a bigger picture and enable your advocacy.

Take care,
Jennifer