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Spinal Cord Compression Symptoms from A Benign Tumor
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.
Notes for Drs (Notes-for-Drs.pdf)
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@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.
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3 ReactionsPlease keep.us updated my son is suffering alot of ur same symptoms and arguing with his primary care Dr. Got a referral to a neurologist. Tomorrow he goes in for an mri of the spine and brain so hopefully we will get some answers.
@valc66 Welcome to Connect. I am a spine surgery patient. MRI is a good first step to figure out what may be wrong. Spine issues are very tricky and can have overlapping symptoms with other conditions. Neurologists are like detectives and do nerve testing to figure out if signals are being transmitted at the correct speed or are abnormal, and where nerves may be compressed or affected. They also may test for other diseases that could produce similar symptoms. It may be a long process. If a structural problem is found in the spine imaging, then the next step would likely be a referral to a spine surgeon if other conditions are ruled out.
You are welcome to share results here if you wish, and if you do share images, please remove all personal identifying information first for your son's protection. I'm sorry the primary care doctor is difficult to work with. Does the primary care doctor control what referrals are made to specialists?
Jennifer
Thank u for ur response. Yes the primary care was giving him a hard time getting a referral but by some miracle he was able to get in with another Dr at the office who actually listened to him and gave him a referral to the neurologist. Our older son has ms and this son thinks he may have it or something else like u were saying. It could be a number of things. I have had back and neck problems for years and just had to do an updated mri and they found a mass in my spine so I am trying to find out if it is cancer or not and the drs. Just don't seem to take things to seriously especially when cancer runs In our family. It took them a year going to numerous drs. With every one telling me they didn't know what was wrong with my oldest son to finally get a diagnosis. I finally took him to a specialty hospital and he was almost at the point where he could no longer walk. He was also having trouble using his hands. The er dr there sent him to a specialist with the hospital and within 5 min of her being in the room withhim she diagnosis him and sent him directly to the hospital where we stayed a week for treatment. Head transferred from there are spend another week in another hospital doing physical therapy and now walks normal. He still has issues but so much better. Always scares me when he as a flare up though. Sorry for the long response. I just want everyone to know don't give up on finding what is wrong somewhere out there someone has ananswer u just have to get to theright person.
@valc66 You are so right about advocating for yourself. The doctors see so many patients and their attention moves on to the next patient. It sounds like you have a lot on your mind with your sons, but don't neglect yourself. You may want to look for a neurosurgeon that you want to see in your insurance network, and present that to the primary care doctor. They often tend to refer to their friends and buddies in the medical world and don't take time to look for a surgeon with a subspecialty that may be a better fit for you.
I went through 2 years of chasing doctors who wouldn't help me, so I turned to Mayo Clinic. The others were getting the diagnosis wrong in that they didn't understand what was causing pain even though they could see the ruptured disc on the MRI. I was searching for medical literature and found cases like mine that I found because of reading a Mayo surgeon's' literature that led me to other cases like mine, so I knew he would understand my dilemma.
Does your son receive treatment for MS? My family had been involved with a swimming program that many MS patients attended, and it did help them a lot because the water takes away the need to be weight bearing and you can work on strengthening muscles and not worry about balance.
What is your next step for yourself and your son? Do you have an oncologist to talk to about the mass in your spine? That may be an avenue for referral to a spine specialist.
Jennifer
As of now for me I have the appointment with a neuro surgeon and we will see where we go from here. As for my son he is getting the mri as we speak and my oldest son he has an awesome care team that cares for him he walks normal and has a job and now a 1 year old son.
Your thread hit a nerve with me. I very recently went to have a CT w/ contrast to identify why my symptoms had become worse. This CT showed severe degeneration of C-1 and C-2. Symptoms are off the charts but explains a lot. After reading the prior CTs never addressed that area. Only C-2 - T-1. ( I’ve had C-5 - C-7 fused unsuccessfully unfortunately) . There comes a time when you have to become your own advocate. I asked my private MD to request a CT w/contrast ( shows less artifact of the titanium). He now has to get with the “experts “ who deal with C-1 and C-2 to get directions on how to proceed. Now it’s a wait and see. That’s my story! Please strongly become an advocate for your son. In reality, we’re just a number or part of a statistic to be passed on to new MDs in training. Please don’t let your son live the so called life as mine! I wouldn’t wish this on my worst enemy!…David.