Spinal Cord Compression Symptoms from A Benign Tumor

Posted by alexiahope6867 @alexiahope6867, Dec 11, 2022

Long story short, after a concussion in January 2020, I found a small lump at the base of my skull, but it was dismissed by drs because it wasn't hard. I had an MRI around December 2020 (I believe) because I continued to have concussion symptoms for months. The MRI was normal, and I was told I just had post-concussion syndrome.

Flash forward to Spring 2022, I am doing AMAZING. I feel like I'm back to my normal self. Minimal headaches, managing my PCS, working out regularly, eating healthily, and having a great work/life balance. Come July 2022, I had a very sudden resurgence in concussion symptoms. So naturally, I talk to my dr. We first tried upping my dosage of Nortriptyline to help prevent the headaches, but I noticed the lump at the base of skull has significantly grown and is starting to cause pain. Dr orders an ultrasound, as she thinks it might be a cyst. Turns out it's a soft-tissue tumor, a lipoma, they call it. The radiologist dismissed all of my symptoms and said, "they're harmless and shouldn't be causing you pain." So I go get a second opinion in a bigger city since I am currently living in a college town and finishing my degree. The second dr says the same thing. Despite their opinions, I scheduled to have it removed since it is causing me problems and pain. The surgery is on the 21st, but I have been slowly getting worse all semester.

The pain is constant and has spread beyond headaches and neck pain, radiating down to my shoulders and the middle of my back, approaching my lower back. It is unbearable, I was already smoking weed to help with the pain from the post-concussion syndrome, but now it doesn't even seem to help. I have also noticed numbness, tingling, and some weakness in my limbs, constant ringing in my ears, and pressure in my head, and I have to wear sunglasses about 24/7 because of light sensitivity. I've lost so much weight in such a short period that none of my clothes fit me, but the drs still aren't concerned. I had two instances where I had the right half of my body lose sensation, but eventually, it came back. and most recently, I have had tremors that jerk my head and chest. It is affecting my daily life, my grades, my schoolwork, my job, and my entire future. I am on the verge of failing this semester because the drs haven't actually taken my huge list of symptoms seriously. I am getting worried about it causing permanent damage at this point. But I'm a broke college student in the middle of nowhere in the midwest with crappy insurance. I've been referred to another neurologist, but I can't get in until February. I don't know what to do at this point.

Shared files

Notes for Drs (Notes-for-Drs.pdf)

Interested in more discussions like this? Go to the Spine Health Support Group.

@alexiahope6867 Hello and welcome to Connect. You have had quite the journey. A neurologist is not a surgeon. With the symptoms you have, it might be worth going direct to a spine surgeon. My gut feeling is a neurosurgeon would be preferable to an orthopedic spine surgeon and they should be listed as operating on spine tumors in their areas of interest. Both orthopedic and neurosurgeons may be spine surgeons, and you will have to do some research to find a good one. With insurance that is questionable as to what is covered, you may want to call them and ask where you can be seen by a spine specialist that insurance will cover. Ask the insurance company for names of better surgeons. Sometimes they classify them according to some name like "Blue Distinction". Spine surgeons like to work with a particular neurologist who does testing and reports to them, so you can probably save yourself time if you start with a spine specialist, and it needs to be one who does surgery near the skull. Those are very specialized spine surgeons. Mayo has them. If you wait for a neurologist, and then have to wait again to be referred to a spine surgeon, it just wastes time.

I am a Mayo spine surgery patient, and care there is World class. Your symptoms are significant enough, that you may be able to get a priority appointment from a spine surgeon. I'll be happy to help any way that I can. Will you make the call to your insurance company. Spine surgery is very expensive, so you need a surgeon in network for your insurance.

REPLY
Please sign in or register to post a reply.