Posts by feralridge3

Angela Wright said:I honestly fail to see the connection between choline and brain function 😕
.

🤷
I've been doing some digging online lately. My long-term memory seems to be improving, but my short-term recall is still a mess—so, forgive me if I’ve misconnected the dots here; I can barely remember where I read half this stuff. However, based on what I've gathered, I'm starting to suspect that elevated choline levels might actually suppress the immune system, which could potentially trigger a relapse. 🤷
To me, the bigger mystery is how anyone could possibly reach such a conclusion in the first place. 😕 No one has even reviewed the scans, and none of my previous doctors have offered any insight or documentation; the only thing my neurologist has done is schedule an EEG for three months from now.
😕

Should I be worried? 🤔

My MRI results came back okay. I’ve already seen both the neurosurgeon and the neurologist, and today I met with an oncologist who confirmed there aren't any signs of tumor recurrence, but...

The spectroscopy showed elevated choline levels relative to NAA. I am requesting a follow-up brain MRI with spectroscopy. If the spectroscopic findings prove positive, I would recommend chemotherapy following the VCR/CCNU protocol.

😕

Lisa White54 said:Please accept my sincere condolences.

Regarding the Durogesic... When my brother-in-law passed away (about a year ago now), my sister gave me some leftover 75mcg Durogesic patches because my husband uses them too. However, our local community health clinic actually demanded that I return them TO THEM... Unbelievable! I was completely bewildered, as if we had committed some kind of felony! They claimed we aren't allowed to possess more patches than what was specifically issued on the prescription. I have no idea who they are handing them out to without a script... or how even that is possible?? We can only obtain Durogesic at a pharmacy, certainly not at the clinic!!!

So, we ended up with no supply left, yet the pharmacies have nothing in stock (the paradox!), and even when I bring in a valid prescription, I have to wait two days just to pick it up.

thanks.
Yes, you are correct; the patches have to be returned, and we did indeed return them.

One question: is there a three-year limit on disability benefits?

Does anyone have a need for these?
I have three patches left, the "size" 50 type (which actually measures about 21 square centimeters).
My grandmother was using them during her final few days, and these three were all that remained.
Sadly, she passed away last night after battling a rare bile duct carcinoma that had spread to the liver and beyond. 😢

Gary Cooper2 said:Is there any kind of disinfectant out there that isn't toxic or harmful to your health when used as a mist or vapor? I'm looking for something that kills over 90% of bacteria.
I see people using this stuff all the time over in Europe—it's standard practice in gyms, SCHOOLS, waiting rooms, nursing homes, you name it—but I haven't been able to find anything like it here in the States!

Personally, I just stick to what they use in hospitals, like Lysol. You can pick up a liter bottle at most pharmacies for about $15. It's a concentrate, so you have to dilute it. I use it for mopping floors and tiles.

slyseal28 said:Yes, you definitely belong here. If you can make it work, please join us. 🙂

I'll try my best to show up, but I still need to figure out my transportation situation. 😉

slyseal28 said:If you aren't sure whether you're dealing with a rare tumor, please reach out and ask us.

Does my diagnosis of ganglioglioma anaplasticum actually fit in here?

feralharbor89 said:Shouldn't those medical review boards be replaced by inspectors who actually visit the doctor's office in person?
I read about that proposed change recently, and I actually had a bit of an extended medical leave just the other day. The representative from the review board reached out to my primary care physician directly, and all we really had to do was make sure my latest test results were updated in my digital health records. In the end, I didn't even catch a glimpse of the board representative myself.

Having been on extended disability for quite some time—dating back to the old system—I can say it really just depends on the doctor whether they send you down to the Social Security Administration office or if they arrange for the commission rep to visit the clinic. 🙄
To be perfectly honest, I actually prefer being sent to handle it myself; it involves far less administrative headache. 😉For instance, I’ll visit my doctor the day before, usually first thing in the morning, so he can finish the paperwork. I grab my documents and head over to the local SSA office (in my area, the commission sits at the office until 10 AM and then heads out into the field). There are usually only one or two people in the waiting room, so I hand over the papers and wait. Sometimes they call me in for an interview, sometimes they don't. Either way, I grab my paperwork and make it back to the doctor's office to pick up my disability slip.

If luck isn't on my side and I see the doctor a day early, he might tell me to come back at a specific time the next day, which inevitably leads to a long wait. Sometimes he sends me home, sometimes he doesn't, and occasionally he just hands me the papers a day or two later—which means three separate trips.

With the introduction of this new legislation, I genuinely expected things to become easier for us patients, but in my experience with my doctor, that hasn't been the case at all.
On the flip side, I've seen cases of long-term disability where the patient just rests at home, and the doctor handles all the extension logistics. If the doctor thinks a visit is necessary, they'll call you in; if not, the patient either goes to pick up the slip or someone else handles it for them.

vividranger8 said:The only thing that's obvious here is that you've got quite the imagination!
Don't sweat those other people's accounts, though—you aren't gonna pull a single cent out of them anyway... 😁

Can someone explain this?

About a year ago, right after I updated my PIN, there were a few times where I accidentally typed in the old one, and the system kept insisting the PIN was incorrect every single time.

James Rogers53 said:I don't know—it seems a little sketchy that you used your own Visa to access someone else's account. Not all cards are created up to the same standard, I guess. 🤷

What exactly do you mean by "sketchy"?🤷

Can someone please make sense of this for me?
I was at an ATM and inserted my Visa, but just as I went to hit the first digit of my PIN, my dog suddenly lunged because he saw another dog passing by, and I ended up hitting the wrong button. In that split second of chaos, my immediate thought was to just mash two more random numbers so the machine would throw an "incorrect PIN" error, giving me a chance to start over with the right code.
However, to my absolute shock, the screen told me I could withdraw $33. 😲
It’s glaringly obvious that I somehow accessed someone else's account. 😲
I basically could have walked away with $33 from a total stranger. ☕
I finished the transaction, took my card, put it back in, entered my actual PIN, and withdrew my own money like nothing happened. 😲

My question is, in a situation like this, is it actually possible to trace who withdrew those funds?
Honestly, if there had been ten thousand dollars in that account, I probably would have done exactly what I did, though I realize most people wouldn't be so blunt about it. 🤷

On a separate note, I much prefer doing my withdrawals inside a Chase branch rather than dealing with an ATM anyway.

mistyjackal842 said:feralridge3

How are you feeling now that the surgery is behind you? I was wondering, what were the actual symptoms of that tumor, especially since it was located so close to the optic center? Did you deal with a lot of headaches? Also, did they have you do any computerized visual field testing? I'm really rooting for you—I truly hope everything clears up completely and that the tumor is totally gone.

Khm, I think you've misread the situation slightly. 😉
In my case, the tumor was completely removed both times.
Yes, it started with headaches—they became increasingly intense and frequent until my head was in constant pain, and even over-the-counter painkillers weren't doing a thing. I ended up being hospitalized after arriving at the ER.
Later, while I was processing everything, other signs started appearing... issues with stability, stumbling while walking, and a diminished sense of depth perception.
I didn't undergo any specific eye-related diagnostic testing.
After the first surgery, it felt like my vision had worsened, and that period dragged on for what seemed like forever.
Now, two and a half years later, I have no issues with my vision whatsoever.🙂

Jesse Sanchez90 said:Does it show up clearly on the images without using contrast dye?
Sometimes it even comes down to whether the imaging is triggered at the exact right moment while the contrast is circulating.
But honestly, yes—it is incredibly important who is looking at those scans, how they interpret them, and when they do it.

I honestly don't know; I haven't even asked my neurologist or my neurosurgeon yet. 🤷
If they had told me there was any uncertainty at all, I would have marched straight back to my neurologist immediately. I would have pushed to get into neurosurgery much sooner to avoid that whole mess with the operating room renovations... plus there were other delays involving the relocation of the surgical suites... a perfect storm of circumstances, really. To give you an idea of the timeline, I was at the Mayo Clinic back in February, but the surgery didn't actually happen until mid-May.
When we are talking about the brain, and specifically because my tumor was located so close to the visual center, every single millimeter counts. 😢

mistyjackal842 said:Honestly, I wouldn’t dream of going to Nemetov for an MRI, even if I might actually need one myself. I know someone who went there earlier this year using their insurance, but the report from their head CT was just... I don't know, it was such a mess. It felt rushed and totally disorganized. I suspect even a neurologist would have had a hard time making sense of how they laid everything out. I saw someone on this forum post a scan from Diagnostics 2000 once—it was an MRI, not a CT—and the report was so much more detailed. It was actually readable, you know? I'm just confused, though, because I think I saw someone mention here that Diagnostics 2000 doesn't take insurance. But according to yesterday's edition of The Washington Post, their own ad says they absolutely accept Medicare, and their website says the exact same thing.

feralridge3

Did the people at Nemetov realize there was a tumor? I mean, did they miss that an existing tumor had grown, or was it just discovered right then and there?

The tumor was completely removed. Six months later, I had to follow up with my neurosurgeon with new scans, so I scheduled an appointment at Nemetov since their wait times are supposedly the shortest. Honestly, I felt like a little kid again when they told me everything looked fine—even the report didn't mention any recurrence.

I managed to get in with the neurosurgeon just under a month later. When I showed up for the check-up, he couldn't believe they had missed it. He spent the whole time pointing at the images, explaining what was what, and expressing total disbelief. The tumor was about 1cm in size.
The reality is that my tumor progresses incredibly fast, so catching a recurrence immediately is absolutely critical.

If they had simply told me, "We aren't certain, please get an MRI with spectroscopy," I wouldn't have complained. Instead, I wasted a month, and then due to a series of unfortunate circumstances, I lost another month. By the time I finally went under the knife, the tumor had doubled in size. 😢

After an experience like that, I wouldn't set foot in there again.

I forgot to mention earlier: they knew everything. I always carry my entire medical history and all my imaging results with me, and quite frankly, that file has become massive.

wearymarlin99 said:Greetings to everyone!

I had an MRI on my knee and lower leg at the Mayo Clinic back in March. Honestly, the waiting lists are a total joke—unless you have some kind of "connection," you're basically stuck.
I recently went to Nemetov for an orthopedic consultation, and since it’s a private clinic, you have to pay out of pocket. From what I gathered while chatting with a nurse there, they don't seem to accept standard insurance referrals for MRIs. She mentioned how expensive the scans are, noting that her cousin is still stuck waiting in line at some public hospital.

Last year, I actually managed to get an MRI done at Nemetov using my insurance referral, and I didn't even have to wait long—just about a month.
There is absolutely no way I am ever stepping foot in that place again. To put it bluntly, their report stated that everything looked perfectly fine, completely failing to detect a tumor that was already nearly a centimeter in size. Furthermore, a nurse working with the doctor who reviewed those scans told me later that the physicians here don't particularly trust images coming out of Nemetov because their equipment is subpar.

Give the general hospital in Indianapolis a call. Since they just got their new MRI machine up and running, most people probably aren't even aware of it yet, so there shouldn't be much of a wait. 😉

Anyway, while we’re on the subject of MRIs, I had an appointment scheduled at Quest Diagnostics today for a brain MRI with spectroscopy. I show up, only to find out they can't actually perform the spectroscopy part—apparently, they haven't been offering that specific scan for quite some time now. 😠
I mean, seriously? They were organized enough to call me last week to confirm my appointment, yet they couldn't bother to notify me that they wouldn't be able to complete the actual procedure. Damn! 😠
The bottom line is that since I needed an MRI with contrast, I could have just gone to the hospital in Indianapolis and gotten it done there instead.
This is the first time I've dealt with a screw-up like this at Quest Diagnostics. Up until now, everything has been perfectly fine.

Zachary Hayes81 said:I might need an MRI soon, so I’m wondering—given how absurdly long the wait times are through Medicare—can I just walk into a private clinic and pay out of pocket without a referral? 😕
Basically, can I just show up and say, "Here's my cash, now scan me"?

I highly doubt they'll just let you in like that. 🤷
I tried paying for one myself once, and the specialist sent me right back out the door.
You really need some kind of medical documentation first.
If you actually have the paperwork, though, they’ll usually get you in within two or three days.

driftinggull21 said:At Quest Diagnostics, they accept Medicare for MRIs, and you don't have to wait nearly as long for an appointment. I managed to get one scheduled in less than a month.
If you go to Sun Valley, you just pay $667 out of pocket and they can fit you in almost immediately.

It’s entirely possible someone just canceled, so you happened to slide into their slot. 😉
As for me, I'm booked out until November.

Jack Lopez63 said:Unfortunately, everyone’s got a point here. We see it all the time—a GP dismisses some pain as nothing, only for it to turn out to be something serious. On the flip side, you have people getting run through expensive, invasive tests for a minor infection. It’s impossible to find a middle ground, so everyone just plays it safe to avoid being sued. People rush to the doctor for every little thing because they get spooked by sensationalist news stories and TV medical dramas; meanwhile, doctors order high-end scans immediately just to dodge malpractice suits. The end result? Skyrocketing healthcare costs, endless waiting lists, an overwhelmed system, and a whole lot of frustrated patients and providers. The government is too paralyzed to set clear guidelines on when a doctor should intervene, where their liability ends, and what level of service a patient can actually expect within a reasonable timeframe. This chaos is self-inflicted. It’s like giving a highway patrol officer total discretion to set speed limits on the fly and hand out tickets whenever they feel like it—it’s pure anarchy.

I have to respectfully disagree with the idea that GPs are too quick to refer people to specialists, or that specialists are too eager to order pricey diagnostics. I learned this the hard way after visiting my family doctor several times regarding intense, recurring headaches... I mean, sure, everyone gets a headache now and then. 🙄
I tried taking painkillers, but they were becoming increasingly ineffective. Once the pills stopped working altogether, I ended up at the ER—three times in a single week—and it wasn't until that third visit that they finally sent me straight for a CT scan, which revealed a brain tumor.

fadedheron892 said:In NYC—When you get all your results back—the scans, the CD, and that written report—which one is actually the least important thing for someone like a neurosurgeon to look at?

It isn't happening everywhere. 😉