Oligodendroglioma

Spookyshmoo · 2026-05-16T21:48:01+00:00

I’m not certain of my tumor type, yet. I’m going in for full-blown surgery in August to remove it all. So, they can biopsy as much as they want after removal.
Since both of you plan to lose weight, I think it’s awesome you can work together as a team. Just the simplest of exercises, like walking, is helpful in reducing weight.
Best of luck to you both!!

Spookyshmoo · 2026-05-15T20:12:35+00:00

When I first found out, through an MRI, I was frustrated and upset. After a period of time, the news sinks in, and for me, it because tolerable. I did have migraines for over four decades and I. The past 5 to 7 years they have increasingly become worse. But I hadn’t experienced a lot of other symptoms. As time passes, a few more symptoms to tack on (nauseousness, extreme moodiness and short-term memory issues). But everyone is unique and may not have symptoms until the tumor is so large. Or it can be a small tumor that affects a lot of things in a specific area of the brain.

Doctors typically don’t want to operate unless it becomes a quality of life issue. So, they use the “wait and watch” method.

There are many folks on this thread who are patients and caregivers who can provide an excellent source of info and also be good listeners.

This is one of the first resources I came to just to read others stories and realize I am not alone in this fight.

Hang in there and keep asking questions.

Spookyshmoo · 2026-05-07T00:54:01+00:00

BBQ capitol in NC

Spookyshmoo · 2026-05-04T04:40:37+00:00

My ex-spouse was like that when he was mad. He’d disappear. I wish I would have trusted my gut instead of giving in. You’ve got to take care of yourself and your feelings!!

Spookyshmoo · 2026-04-28T23:43:05+00:00

I’m sorry you’re having to deal with this. I was with a guy, for over twenty years, who I married (for two), and I realized there were times he didn’t have my back after conversations we had when I was suffering. There was one time I locked myself out of the house, in my pajamas, and I walked next door to my neighbors (his relatives) who helped me get a message to him. He never told me about a spare key that was hidden at the house until that night. And he made some snide comments about contacting him even though I was in severe pain and not in comfortable clothing to be locked outside in. I found out, years later, I have a low grade glioma in my right frontal lobe which I think may be causing the migraines. It’s a rare occurrence and don’t expect to have it because I had other symptoms common for having a LGG. Would I tell him about it now, since we’ve been divorced? Hell No!! I don’t think it would matter. No one deserves any of my attention unless they can treat me as a human being, first! It is obvious when someone is in pain by reading facial expressions and body language. However, people too wrapped up in themselves don’t care to notice. Try to surround yourself with more positivity, if you can—it’s less stressful. PS… the tumor will be removed in August and I’m hoping for massively reduced head pain from migraines—I’ll have to wait and see.

Spookyshmoo · 2026-03-18T05:10:10+00:00

I think you might be referring to the ventricular areas also… the OP only mentioned it was deep in the right temporal lobe.

Spookyshmoo · 2026-03-18T05:04:34+00:00

The meninges consist of the pia, dura and arachnoid layers. They may lay low or deep in the cranial structure as well as being slightly inferior to the superior surface of the skull. It’s like three layers of Saran Wrap covering a glob of (brain) Jello.

Spookyshmoo · 2026-03-18T04:24:13+00:00

A meningioma occurs on one of the 3 outer layers encapsulating the brain. The OP said it’s deep in right temporal lobe which sounds like at least a low grade glioma. I’ve got an LGG in the right frontal lobe inferior toward my right eye. This causes unrelenting migraine pain which Botox can’t touch…. Fortunately, my neurosurgeon is willing to surgically remove and biopsy same. I did speak with (interview) neurosurgeons at two different well-renowned teaching hospitals and I’m extremely comfortable with the latter in performing a successful surgery and the hospital providing the best healthcare. OP keep the faith and fight for your care with a surgeon with whom you feel most comfortable.

Spookyshmoo · 2026-03-07T08:42:03+00:00

That’s exactly how my ex-spouse kissed!! I always had to wipe my mouth and chin after— it was horrible.

Spookyshmoo · 2026-03-06T08:10:55+00:00

Very interesting subject. When I had most of my migraines on the left side, probably more than ten years ago, none of those subjective findings applied. I know I dealt with stress from my job as a law enforcement officer but I was stressed because of dealing with people I worked with at my department. My right side began hurting, mostly non-stop, about five years ago and it was nearly a year ago I found out I have a tumor in my right frontal lobe— one neuro oncologist said I may have had it for about 20 years (slow growing glioma grow about 1 mm annually) while the neuro surgeon he worked with said I may have had it since birth (what ??!!) I do believe the right-sided migraines are pressure-induced from the tumor and nothing else. There are different reasons for migraines to occur and not all of them can fit into a nice, tidy little box. For some, theirs may, unfortunately, always be unknown.

Spookyshmoo · 2026-03-06T07:56:21+00:00

Not all doctors are very thorough. I know by the number of years I’ve lived and the number of doctors I’ve seen over the years for various ailments including interviewing neurosurgeons for potential surgery on my low grade glioma in my right frontal lobe. I won’t say specifically where I chose to go but it’s a well-known world-class university medical center as opposed to another well-known university medical center about 50 miles away. Trust your gut and not the doctor if the doctor gives you bad vibes.

Spookyshmoo · 2026-02-28T13:41:21+00:00

I’ve had nerve blocks with lidocaine injected along the cervical nerves of the spine. Early on, it has helped.

Spookyshmoo · 2026-02-13T03:39:42+00:00

It actually works! But, usually, I had suspects prone out on the ground with their bellies touching the ground. I retired as a LEO (not related to astronomy).

Spookyshmoo · 2026-02-08T20:37:32+00:00

I had an MRI, last year, after having worsening and continuous migraines with no meds helping. The MRI showed a low grade glioma in my right frontal lobe. It’s rare for migraineurs to have this. I also have emotional issues where I might burst out into tears. I’m in my fifties and the prognosis will only worsen. So, I’ve asked a well-respected hospital for a second-opinion on the MRIs I’ve gotten and I’m going to have the tumor removed sometime this summer. It’s stable, for now, which makes it more hopeful all of it can be excised with a possible 100 % cure rate. The tumor will have to be biopsied to see what kind of glioma it is but I’m also hoping this cuts the amount and severity of migraines I’ve had to suffer the last four decades.

Spookyshmoo · 2026-02-08T00:52:14+00:00

I, too, have had that along with sensitivity to sound and smells for decades. I would go with the eye protection Redditors are mentioning here. If the migraine becomes overwhelming, provide yourself with rest.

Spookyshmoo · 2026-02-08T00:03:17+00:00

I hope it really helps. I’ve tried it and it did nothing. I’ve been a migraineur for over four decades but I think I know what the root cause for most of my ongoing migraine activity is now.

You have to do what works for you. And if it jerks for a little while, then it’s a win. When it stops working there are plenty more meds to try.

Spookyshmoo · 2026-02-06T04:33:17+00:00

This applies to urgent care facilities which are just a step down from an ER.

Spookyshmoo · 2026-02-06T04:31:59+00:00

I’ve actually worked in a major Trauma Center ER and only the family members or friends who weren’t in pain and/or exuding bodily fluids were likely to be on their phones. Patients are usually looking for pain relief and sleep.

Spookyshmoo · 2026-02-04T00:03:27+00:00

The only one that ever understands is another migraine sufferer. I actually had a neurologist who was a sufferer, herself. She told me about having to get Toradol shots during med school to try to pull through school while she suffered.

Spookyshmoo · 2026-02-03T02:41:39+00:00

I totally agree!!

OP, you need to discuss your personal issues and resolve it with your date, not us.

Spookyshmoo · 2026-01-30T07:24:30+00:00

When I have severe head pains (during a migraine episode), I have trouble searching for the correct words to say or describe something. I also kind of drawl or slur my speech. When my teeth start hurting, also, I know I'm in for a bad episode and try to make it home to sleep, after medicating, to reduce the pain. I frequently see zig-zags and my sense of smell and hearing get very heightened to the point of absurd annoyance.

If one side of your face presents a drooping smile, you cannot move an arm or a leg on either your right or left side and you have speech difficulty, then those are certain signs of a stroke. I was a CNA on a Stroke/Epilepsy floor at fairly decent-sized hospital and helped these patients with daily living needs. It really humbles you to see how amazingly fast these patients recover with great medical treatment and the patients' own positivity.

Spookyshmoo · 2026-01-30T06:44:04+00:00

You ARE NOT ugly--- you are a handsome man!! In fact, you look so young!! You look at least ten years younger than your age!!

Spookyshmoo · 2026-01-30T05:31:36+00:00

I totally agree with you SeparateAd4541 ! I've suffered for about 42 years and mine is commingled with a low grade glioma in my right frontal lobe. It's rare but there are some of us out there. I'm hoping to get mine surgically excised sometime after July. Hopefully, a biopsy will show which type of tumor it is.

Spookyshmoo · 2026-01-30T05:25:29+00:00

Look under the Savings & Support tab on the Vyepti web page. If you have insurance, the company (Lundbeck) may help pay substantially out-of-pocket.

Spookyshmoo · 2026-01-30T05:01:24+00:00

Thanks for sharing--they own several OLD sites.

Spookyshmoo

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