Spinal Tumor

In My Humble Opinion
1

Not asking for medical advice. :slight_smile:

Back in August I had an episode of syncope. Two days in the hospital without a definitive diagnosis later, I was sent to my PCM, a cardiologist, and a neurologist. We’re still hammering out a variety of issues, but the one that’s taking up the majority of my attention is what showed up on a lumbar MRI (amusingly, the MRI was ordered not because of the hospitalization, but because I mentioned to the neurologist that I had had back pain for about a year).

According to the results, I have “a large intradural extramedullary mass extending from the lower T12 level to the upper L2 level.” It’s about 1"x3"x2" (which… kind of seems huge to me- I saw it on the MRI and it’s a little overwhelming, even though I know it’s not THAT huge). The neurologist felt that the news was urgent enough that when I couldn’t make it into his office the next day to hear the results in person, he gave the bad news to me over the phone.

Since then I’ve been sent to a neurosurgeon, who has requested a repeat lumbar MRI (this time with contrast) and a thoracic MRI. Regardless, there’s a 99.9% chance I’ll have to have surgery. Everyone seems to be moving at light speed, and the phrase “because permanent neurological damage” has been tossed around.

As a therapist who’s spent a great deal of time working in hospitals (as well as spending many years as a caregiver), googling is an occupational hazard. Luckily a lot of what I’m seeing is more toward the positive end- if the tumor is confined to the spine (a primary tumor), chances are high that it’s benign. I like that word. (I also like the word “schwannoma,” which is one of the potential diagnoses- it’s fun to say. :slight_smile: )

Has anyone been through something similar? The followup with the neurosurgeon is in two weeks, when I’m sure we’ll create a plan of action. In the meantime, I’ll take any first, second, or third-hand information I can get. :slight_smile:

2

No info to offer, but you have a great attitude. I’m wishing you the greatest of luck.

3

Yes, best wishes!

4

I have nothing to say about your tumor, but I will say that I once had an episode of syncope. I was cooking dinner and suddenly woke up on the floor. it scared the hell out of me and I saw my doctor the next day. He was not too concerned, and said a single episode doesn’t necessarily indicate anything serious. And in fact it has never happened again. That was almost 10 years ago.

5

No experience with schwannoma here either. Typo Knig had a hearing test a couple months ago which shoed slightly less function in one ear than the other, so they sent him for a head MRI, as evidently a schwannoma is one cause of that pattern (he was fine, there was no tumor).

Do they think the tumor was at all related to the syncope? If not, it might have been a really, really lucky accident for you!! Like markn+, I once had a bout of syncope pretty much out of the blue. Doc did an EKG, saw nothing of concern, and it never happened again.

Good luck!! I know this kind of surgery is scary, but it sounds like they’ve caught it well before you’ve suffered permanent deficit.

6

No experience to give but I hope all things go better than you dared to hope.

7

Thank you all for the well wishes! :slight_smile: :slight_smile:

Yes, my cardiologist said that they allow everyone “one freebie” when it comes to a syncopal episode, and if it happens again, that’s when they start to worry. I just sort of looked at him incredulously, like “Uhhhhh… what if I don’t want a freebie?!?” LOL They did find (thanks to a heart monitor that I had to wear for two weeks but was pretty much OVER by the first two hours) that I’ve been throwing PVCs (confirmed by my PCM who heard it as it happened), but there’s nothing physically wrong with the heart (yay!). Still, they’re trying me out on a beta blocker for three months just to see what that does (so far: not a whole lot, other than dropping my normally-58-BPM-heart-rate to somewhere in the low 40s).

Interestingly, it turns out that (for a variety of reasons) spinal tumors can cause an irregular heartbeat. As I do more digging, it is starting to look like the tumor is the likely culprit for a number of symptoms I’ve been having, and may indeed have led to the syncope. So yes, extremely lucky accident! I’ll be glad to get this thing out ASAP.

So happy to hear Typo Knig is just ever so slightly less-functioned rather than something more serious! :slight_smile:

8

I’ve seen quite a few schwannomas (benign nerve sheath tumors), including spinal ones involving the dura. Even benign tumors can cause trouble by putting pressure on nerves.
Often surgeons will send a biopsy of the tumor for frozen section evaluation during surgery to confirm what they’re dealing with.

Best wishes for a good outcome.

9

I definitely understand the “GET IT OUT” feeling. About 10 years ago I was diagnosed with a benign tumor (not a schwanoma, but a paraganglioma–otherwise known as a glomus jugulare tumor) in my skull. I wanted it out more than anything else, and I wanted it out fast. But after about 5 second opinions, I learned that it was really too awkwardly placed (wrapped around my carotid artery and next to some very important nerves) for surgery. The final straw was when the most experienced head/neck surgeon at Memorial Sloan Kettering said “I can take it out, for sure. I can do a perfect surgery. But even if everything I do is perfect, there’s a better than 90% chance that you will wake up and never be able to swallow again.”

So then I started looking into radiation. This tumor was too big for the “cyberknife” radiation that is very popular and successful for a lot of cases (just one treatment and you’re done), so I was down to “traditional” stereotactic radiation. I had five days a week for five weeks. It was definitely not fun; fatigue was a problem starting around week 3, but I powered through that. The gastrointestinal issue (c. diff infection) that followed was even worse. But after it all, the tumor was stopped dead, will never grow again. I permanently lost my hearing in my right ear, and my sense of balance will never be what it was. But overall it was a much better outcome. I enjoy swallowing!

So in case it’s at all useful, I’m just recommending that you get a lot of opinions and look at all the options, even though I understand that you want this thing out of there quickly. “Benign” sounds so nice and friendly, and it’s definitely WAY better than malignant. But it can still cause some serious issues, and it’s worth checking out just what you can expect from the surgery itself, especially when the tumor is in an important area like your spine. If radiation is an option (and it isn’t always, and radiation side effects, especially in the abdomen, can be quite unpleasant), it might be worth checking out.

Sorry you have to go through this and I wish you all the best.

10

Not an exact parallel, but I had a cyst pressing on a nerve in my spine, which was found because I was having other problems with pain in my legs and feet.

The solution was to try to take care of everything at once. I had surgery to remove the cyst and also to cut off a slice of hip bone to insert between lumbar vertebrae to replace missing cartilage, with a titanium cage built around them for stability.

This was when I was 59, which is still relatively young for such things, so I made a quick recovery. Three days in the hospital and a couple of weeks of rest at home followed by PT. I had a second similar lumbar surgery when I was 66 and that recovery took longer, though. The younger you are, the better.

It’s serious surgery to be sure, but a quick in and out is much better than some other treatments. (My condolences, Joeu!)

11

I have something similar I suppose, a spinal cyst that is. But mine is much smaller and best left alone I’m told.

About 12 or so years ago I needed a head/spine MRI for unrelated reasons when it was found. I have what’s called syringomyelia - a thread-like cyst. Mine runs C4 to T1. Since it’s so small and I’m asymptomatic, the neuro says surgery is more risky than just leaving it alone. I’m supposed to monitor it for any growth. But I haven’t had any follow up imaging or anything. If I ignore it I’m sure it will just go away.

My experience is different so no advice or anything or the sort - just wishing you well and good luck.

12

Hi again, all.

On December 17th I had surgery to remove the “massive goombah” (my neurosurgeon was delightfully Italian) from my spine. I spent 48 hours laying flat, getting flipped like a pancake from side to side by the very nice nurses every few hours. Once they felt comfortable that I wasn’t going to leak spinal fluid, I was slowly tilted until I was sitting upright. Another 24 hours, and I was sprung from the hospital. About 10 days on painkillers/muscle relaxers, then just an occasional Tylenol after that.

The intraoperative consultation tagged it as “positive for malignancy, Intermed to HG glial neoplasm.” O.O The post-operative consultation from the Mayo Clinic officially diagnosed it “a difficult lesion to classify, but the immunohistochemical stains performed along with review of the histology was best classified as a WHO grade II ependymoma.” I’m calling it a “jasonmomoa.”

The first part of the surgery was a laminectomy, which removed the lamina from L-1 and shaved down T-12 and L-2. Because I have to have ongoing MRIs to monitor the site for recurrence, they couldn’t put anything back in that space. Eventually scar tissue will provide some protection, but there is a risk that I’ll basically fold in half when I get older (at which point we can look into rods or other stabilization options). Hubby has made me promise that should I suddenly randomly fold in half, that the first thing he’s allowed to say is “My friend; you bow to no one.” :smiley: Of course I agreed.

I’ve had two wound checks since the surgery; as of yesterday the doc “hates” the way the incision looks. :frowning: It’s not infected or anything- just not fully sealed the way it should be, and apparently the only thing holding it together are the internal stitches. I continue to be on fairly significant physical restrictions as a result; no lifting, twisting, bending, or pretty much anything other than walking and sitting on the couch. It’s exceptionally frustrating.

Many, many, many props to the hubby, who has not only been an amazing caregiver, but has also taken up all the day to day stuff at the house. I mean, the cats appreciate the fact that they have a warm, non-moving target to lay on all day, but they also appreciate things like food, water, and a clean litterbox. LOL.

Overall, not the most fun I’ve ever had, but absolutely worth it. Thanks for all your well-wishes and information!

13

Best wishes. I hope you continue to heal up.
Hugs to hubby for being. a good caregiver.

14

Glad to hear it went reasonably well. Hope things continue to improve.

15

Glad you’re healing; keep us posted.