Diagnosed Yesterday; Convinced I'll Be Left Paralyzed :(

[tthomas22]

I had the shock of my life yesterday when my neurologist wanted to see me ASAP, the morning after getting my MRIs done. Apparently the radiologist called my neurologist at 11PM the night of my MRIs. My neurologist showed me my scans and the huge meningioma tumor located at my T3. I initially went to see her believing I had a pinched nerve for the past year, so to see and mentally process that I have a large tumor on my spine, pushing up against my spinal cord, I was in shock. Thankfully she thinks the tumor is benign. Also thankfully she urgently scheduled me to see a neurosurgeon later in the afternoon.



In utter shock, I returned to work. Unable to concentrate, I started Googling "meningioma," "T3," "spinal cord tumor," "spine tumor surgery." To my horror, I quickly learned about the extensive and painful recovery period, the seriously invasion surgery, and worse of all, the 5% chance that I'll be left paralyzed from the upper torso down.



Armed with this new information and scared out of my mind, I went to see the surgeon. He explained in detail how he would perform the surgery on me, and I was left thinking...how on earth will I NOT be left paralyzed? The surgeon seemed very confident in his plan - he said the best course of action is to go in from my back instead of through my chest (to eliminate damage to my lungs and heart). He's also already done 12 surgeries like this in 2018, so that's encouraging. His plan involves cutting out more that one vertebrae, going in from the side, hoping to get all of the tumor but might not be able to, pins and rods put back where the verebrae were, a possible mesh somewhere as well and a possible tube for excess spinal fluid collection.....again left me 100% convinced there is no way I won't be left paralyzed. Although he said the chance of me being left paralyzed is 2%-4%.



I really don't have a choice here. I must have the surgery, and going through my back seems the better option. If I do nothing, the tumor will grow, eventually damage my spinal cord and the chance that I will become paralyzed in the future is 100%. Radiation or chemo won't work on this tumor, so that's out. Understanding that surgery is my only option, I am absolutely scared and 100% convinced that I will, no doubt, be left paralyzed.



My surgery is scheduled for August 9th. I am a hot mess. I am usually a Pollyanna-positive person, but I've burst into sobbing tears throughout the day when I think about waking up from the surgery and not being able to move my feet and arms.



Can someone please help me with my fear? Am I being totally irrational? A 96% chance that I WON'T be left paralyzed is very, very good, but I can't help but zero in on the 4% chance that I WILL be left paralyzed. Thank you so much in advance for your experience, thoughts and help.

[terry]

Hi Tthomas,

I know that being diagnosed with a spinal tumor is not a fun experience. And, no: you are not acting/feeling irrationally. This is a serious issue but it can be treated. I did not have the type of tumor you have . My tumor was treated with a Cyberknife procedure but not all spinal tumors are amenable to this treatment. It is also a somewhat controversial treatment but [at this point in time] I am doing just fine. You wrote that your tumor is not amenable to radiation so this probably rules out a Cyberknife procedure.

This is some advice I can give to you: as I've written and as you know this is a complicated and serious condition. I would highly recommend that you seek opinions from more than one neurosurgeon and/or neurologist. These tumors are somewhat rare and it is hard to find physicians/surgeons that have a lot of experience but that is who you need to talk to. If you have to travel to do it, you will have to accept that is what you need to do to get the best plan/treatment. As you know, the quality of your life will depend upon what treatment/surgery you elect to have and who does it. Think long and hard about this as all surgeons are not equally capable. I know that this feels like a urgent situation but make sure that you don't get pushed into a surgery that isn't the best for you out of a false sense of urgency. You can search for Utube videos that show and describe the surgery necessary to remove a tumor from the spine. After that, you will have a good appreciation for the difficulty of this procedure. The difficulty of your surgery will depend upon how integrated the tumor is with your spine/nervous system. Talk to people you trust.

Here's the other thing: this discussion board has largely gone quiet. You can still find a lot of very useful information here BUT it is difficult to get answers to your questions on this board now. Apparently the people who used to post on this site have gone to FaceBook and if you belong to FaceBook, you can probably find them. I don't belong to FaceBook so I have no idea exactly where these discussion threads have gone to.

Good luck. I would be happy to do what I can to answer any more questions but obviously I don't have the tumor that you have been diagnosed with. Terry