Treatment options for Chordoma of scapula and spine

Posted by glen0708 @glen0708, Dec 15, 2018

My Chordoma started in 2014 in the shin bone, surgery removed the tumor, then in 2018 it reappeared in scapula and spine. All the tumors have appeared in very unusual places. Chordomas are very rare, the location of mine are even more rare! Just wondering if others have experienced similar problems and what options were offered. Chordomas usually present at base of shull and spine.

Hi, @glen0708 – welcome to Mayo Clinic Connect. I can imagine with this more rare tumor, it would be helpful to connect with others.

Here is some Mayo Clinic information on chordoma you may find useful https://www.mayoclinic.org/diseases-conditions/chordoma/cdc-20355401.

I'd like to introduce you to a few members who may have some input for you on your chordoma of scapula and spine, like @johnbishop, @lillyanne @ld57feast @jenniferhunter @Tbato622 @predictable. Though they may not share the exact diagnosis you mention, I believe they will empathize with some of your experiences and have insights to share.

Since you had tumors appear again in 2018, this time in the scapula and spine, wondering what treatment you may be undergoing or considering at this time, @glen0708?

Hi @glen0708 — I would like to add my welcome to Connect along with @lisalucier and others. I don't have any experience or knowledge of chordoma but there is a Chordoma Foundation website that has quite a bit of information that may be helpful, including some research and clinical trial listings.

https://www.chordomafoundation.org/treatment/

John

I was wondering if you have a fibromyalgia group?

@pharis022

I was wondering if you have a fibromyalgia group?

Jump to this post

Hello @pharis022 — there are a few fibromyalgia discussions on Connect that you might like to read through.

Groups > Autoimmune Diseases > Fibromyalgia?
https://connect.mayoclinic.org/discussion/fibromyalgia-2/

Groups > Chronic Pain > fibromyalgia pain
https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

John

@glen0708 Hi Glen. I'm a Mayo spine neuro surgery patient. What I understand is that if you have an issue at your skull base, you need a real expert who specializes in skull base surgery. A lot of spine surgeons don't want to operate at C3 or above, and your phrenic nerve that innervates the lungs for breathing exits the spine around C3 increasing risk. Prior to my spine surgery, I had muscle spasms moving my C1 & C2 around and causing vertigo on and off until my physical therapist realigned my C spine. That can also be a symptom of serious problems, and I think it was the one of the reasons that I was refused help by 5 spine surgeons before I came to Mayo. Mayo does have neurosurgeons who specialize in skull base surgeries. Since you have such a rare tumor, you should get help from a place like Mayo that is experienced and willing to do more difficult surgeries. I wish I had come there first and it was worth it to travel for the care that gave me my life back. I had spinal cord compression that kept getting worse over the 2 years that no one would help me. Mayo also has the Proton beam therapy that you can learn about in recent the Ken Burns documentary about Mayo. I've had a great recovery and the quality of my care at Mayo was unmatched anywhere else. If I can answer any questions, just ask. Choose your surgeon carefully and do your best to understand their capabilities. I was reading the medical literature authored by my Mayo surgeon and that was how I knew he would understand my case. I had unusual symptoms with pain all over my body that was caused by spinal cord compression in my neck and all 5 missed the diagnosis. I found medical literature with similar cases and I sent that with my request to be seen at Mayo, and the Mayo surgeon understood what all the others had missed. My story will be featured in the Sharing Mayo Clinic blog soon. I'm a fine artist and was loosing my ability to do my paintings, and my surgeon gave that back to me.

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