Posts by Maria Lee54

Kimberly Wright said:my mom passed away yesterday

Kimberly Wright, I am so sorry. My deepest condolences.
Hang in there.

Angela Wright, I’m rooting for your little one. I hope they make steady progress and get back to full strength quickly so you can both move past this difficult stretch... sending 🙂

Robin Gray8 said:Sorry if this is off-topic, but I have a question.
I have someone very dear to me with melanoma. They need surgery abroad because the necessary treatment isn't available here in the States. Medicare covers the costs, but I'm wondering how long it takes to get approval. Is it an endless process, or does it happen quickly? It's stage 3 melanoma.
Does anyone know?

I've been seeking treatment abroad for several years now because things just aren't possible here at home. Medicare covers my expenses, so I can explain the process of getting medical rights approved for overseas treatment from my own experience. First thing you should know: it’s slow. It's messy. Even when it's urgent, you need a lot of patience. To start, the specialist treating the patient has to fill out a formal Request and Proposal for Overseas Treatment. If there's already a specific clinic in mind, list them as the suggestion, then submit everything to the Medicare Administration. That's when the actual administrative grind begins. A medical board from Medicare will reach out to consultants at various American clinics to get expert opinions on whether sending someone abroad is actually justified. If they find even a tiny chance that the treatment could be done here in the US, they’ll call the patient in for an outpatient exam to reassess. But if all those clinics agree that overseas treatment is the only way, then the Medicare Administration accepts that opinion and approves it. They send over a letter of guarantee and officially request an appointment at the chosen foreign clinic, usually involving a deposit. The whole procedure typically takes about two months. Everything is handled case by case, but that's the general timeframe. I've switched clinics and countries multiple times, and every single time the paperwork starts from scratch—even when my previous approval was still valid. I hope your paperwork gets sorted out quickly. If anything is unclear, I'm happy to help.

It’s been a while since I last posted here. Things have been pretty heavy lately regarding my treatment—everything from finding a clinic that can actually perform the surgery to the current mess of waiting on Medicare to approve my treatment over in Switzerland. My health has taken a noticeable turn for the worse. The tumor is aggressive and growing fast, which makes this waiting game even harder to stomach. But honestly? I haven't lost hope that I'll make it to the surgery in time.

Sending love to everyone. Please keep the positive thoughts coming.😉

Hey brisksurfer, 🙂 🙂
Hang in there. We're all here to back you up. Sometimes just knowing someone has your back means everything when things get this rough.

feralridge3 said:🙂

I'm in recovery mode. 🙂
It’s almost been two years since this whole thing started. I finished my Temodar chemo about four and a half months ago, and now I'm just trying to get my life back to normal. Physically, I'm feeling stronger because I've been working out regularly. Mentally, things are better too. I feel more stable. I'm definitely less scattered than I was five months ago. The only thing that hasn't improved is my memory. My brain feels like it has a constant draft blowing through it. 😍

My MRI in early January showed everything looked good.
I have another one scheduled for mid-May.

I'm happy because I can finally head out to the mountains again. That's what keeps me going right now. I look forward to every single hike. That's how I live—one trip at a time.
Hopefully, my memory will come back eventually. It would be pretty ridiculous to meet someone like Brad Pitt and then completely forget meeting him. 🤣

🙂 I'm so happy for you that you're slowly getting back to the person you were before all this 👍 and back to those mountains you love so much. That's wonderful. 🙂 As for that brain fog, I deal with it too. 😍 Trying to learn something new and actually make it stick? Forget about it. My memory just isn't there anymore.

feralridge3 said:🙂
The waiting is brutal. 😲
I don't know how you do it. 🙏
Both of my surgeries had two or three week waits, and I was losing my mind just anticipating them. Even a one-day delay felt like the end of the world. 🙄 From what I recall, you've been waiting months for this procedure now.
Is the tumor growing?
Hang in there. 🙂

🙂 How are you doing? Where are you at in your treatment?

I'm still stuck in this waiting game...😕

My last MRI scans were back in May of last year when they found the recurrence. It had been a year since my surgery, and the tumor had grown back to almost its previous size. Who knows what’s happened over this past year? Has it grown more? 🤷 I honestly don't know.
The wait is getting harder to handle because it's all dragging on so long. It's only natural that I have bad days.
Thinking about how much a positive attitude and sheer willpower can actually change things helps me get through. When I arrived at the hospital two years ago for my pre-op scans, the doctors were shocked I could even walk in under my own power. The tumor was pressing on my spinal cord and nearly paralyzed me. That recovery was down to my refusal to give up and my drive to stay on my feet.👍
So, I'm wishing you strength and a positive mindset. Having a rough day here and there is totally normal.
Stay strong. 👍

Oh God, this news about that boy is just devastating... I feel for him more than words can say.
Today, I’ve been stuck in this heavy headspace all day long. I just feel so sad and hollow, and I can't seem to shake it with any kind of positive thought. All these fears are just haunting me today—they're getting under my skin. I want to cry, I want to scream... It's just hard. I wanted to write more, but I can't. My head is a total mess right now.

swiftdrifter88 said:Hey everyone, just wanted to say hi!

Maria Lee54, I read your post about your cardiovascular tumor. Honestly, I’m just blown away by your courage and your will to fight for your life. You have to keep going like this—never give up. I'm also really hoping that February surgery you mentioned went well.

About 15 days ago, Dad went in for a scan at the clinic with Prof. Smith because they suspect a vascular tumor. They aren't certain yet, though. He’s waiting on an angiogram before they can give us any real answers. It isn't anything massive, just some kind of anomaly—like the veins on his right side have thickened. He’s functioning pretty well most of the time, but he gets headaches occasionally. Sometimes he trips over his words while speaking, and his right eye tends to twitch. Honestly, I'm terrified. I'm just scared things are going to go wrong. The doctors said they wouldn't operate right away. Instead, they want to try that Gamma Knife method you mentioned. But didn't you say they weren't willing to use that method with you?
That’s all from me for now. Drop us a line when you can so we know how you're doing!

Sending my best. I'm sending you lots of hugs—hope you feel better soon and get that "lump" taken care of, as you call it. 🙂

Hey Ted, thanks for the kind words of support.
I completely get why you're scared. But try to focus on this: once your dad's angiography is done, the doctors will have a much clearer picture. That's when they can actually map out a real treatment plan. In my case, Gamma Knife wasn't even an option because my tumor was too large and stretched into my neck.
Everything’s going to work out. Just stay positive and keep moving forward. Sending good vibes your way. 🙂

Checking in with you all... though I don't have much good news to share today.
As I mentioned before, I went to that out-of-state clinic on February 23rd to finalize everything for my surgery... but once again, things have hit a snag.
It turns out they can't move forward at that specific facility. They suggested a different clinic over in Switzerland instead, and it would still be performed by the same specialist I saw during my initial exam.
Now, I'm stuck waiting yet again...
I'm just waiting on a formal letter explaining why treatment at the first clinic isn't possible. I need that documentation to file a claim with Medicare so I have a valid reason to request a change in my out-of-state referral.
There’s absolutely nothing I can do to speed this process up. This whole situation is pretty depressing, and dealing with the daily pain makes it even harder. I just keep telling myself that these tough days will end soon. Sending my best to everyone else out there fighting their own battles...🙂

First off, my apologies for the double post just now! I felt so awkward about it. It was a total accident.🤷 Sorry about that!!!
Kimberly Wright 🙂 ...just keep pushing forward like you always have!
Keith Thompson, thanks for the support. Wishing you all the best too. I don't try to look too far ahead; I just focus on getting through one day at a time. That's how I've been managing for four years now.👍

I haven't been on Reddit for a while. To catch you all up, I’m battling a severe brain tumor. I actually had to go abroad for surgery because the medical facilities here in the States just aren't equipped to handle a diagnosis like mine. After last year's MRI showed a recurrence—since they could only partially remove the tumor back then—I filed a request with Medicare to cover my continued treatment overseas. It took over three and a half months to get a response. Isn't it funny? I recently heard our Secretary of Health claim these requests are supposed to be settled in fifteen days at most.😠While I was waiting on the decision from the administration, things got rough. I had complications that required hospital stays because the tumor is starting to hit my vital functions. It makes daily life a struggle, and honestly, it's slowly changing who I am mentally. During the paperwork process, I was called to New York several times for specialist consultations. One time, I barely managed the trip from 177 miles, only to have a doctor tell me in the hallway that there was a clerical error. Apparently, one wrong word on a form meant I shouldn't have even been sent there.😕After that exhausting day, I waited another month before finally getting the good news: my treatment abroad was approved. Now, on February 23rd, I’m finally heading in to finalize the details and prep for surgery.🙂Despite this grueling journey and how much it's drained me emotionally, I'm just glad I can still think clearly. I really hope I'll have the same strength, faith, and luck when I move into the next phase of this fight. I'm going to need it. Best, 👍

Dear Lara... I am so incredibly sorry for your loss.

Drew Allen;22269579 said:
The sentence that really caught my eye was, "The procedure is simple, painless, and prevents tumor growth for the next ten years." Does anyone know anything about this?

Based on what I've been through, I have to agree with Angela Wright—only certain types of tumors can be treated this way. Unfortunately, that wasn't an option for me, even though we tried. They set up a frame for it (the prep work is honestly pretty unpleasant), and after the MRI, I was just waiting for the doctors to map out the targeted radiation plan. Instead, I got called in for a meeting where they told me the procedure wasn't possible in my case. But I've talked to several patients who had this done successfully, and the results look great.

About ten days ago, I ended up back in the hospital for treatment. That day felt pretty much like any other during this whole health struggle. But then, out of nowhere, my ear started bleeding. And I mean, it was bleeding quite a bit. Emergency services were called. It took about 40 minutes for them to arrive, and in that time, the bleeding didn't stop. I wouldn't have been so terrified if I hadn't suddenly remembered what one professor told me during my very first check-up after the diagnosis—he mentioned that ear bleeding could be a possible complication. I just thought, really? Is this the time for things to get complicated when my paperwork is such a mess right now? Luckily, I caught a break. It wasn't an internal bleed, and after some therapy and having my ear treated, I was discharged. I called the Directorate immediately to let them know how I'm doing. My case is still being processed. It's vacation season, and they have so many cases on their plates right now, so I just have to be patient and believe I can pull through. I HAVE TO... AND I WILL...
Sending my best to all of you 🙂

Dear Lara, I am so incredibly sorry. Just please, stay brave...🙂

Sam Murphy33 said:She's gone... thank you everyone... she didn't fight it, she just let go...

My deepest condolences... I am so sorry, Sam Murphy33.

It’s been a while since I last checked in. Last time, I mentioned things were getting worse and that I was doing everything possible to get my next round of treatment moving. I spent a full year and a half waiting on a response from a clinic abroad in Canada where I had my surgery. Since then, nobody has given me a straight answer as to why I can't continue my treatment there. The situation is this: I have a brain tumor located deep within the skull. It's a rare diagnosis, one that simply can't be treated surgically here in the States. Getting treatment in Canada was approved by Medicare, so there weren't any hurdles there initially. But clearly, that wasn't enough, because apparently, the money wasn't going into the pockets of whoever my life might depend on. The guy showed me he knows what he's doing, and now he's just waiting. He isn't in any rush to wait... it's sad. My latest MRI and angiography scans show a large tumor in the posterior fossa that requires surgery. Three different clinics were suggested. The professor at Mount Sinai Hospital chose the option in Bruxell, claiming he'll handle all the Medicare paperwork without an issue, since performing the surgery here isn't technically possible. So now, I'm back to this uncertainty. I'm just waiting for the moment I can finally push these thoughts out of my head. Now I have to see what the options are with the professor in Bruxell and if they will actually accept me. I won't go into every single emotion I'm feeling right now. Yesterday, I just broke down. I walked through the entire hospital toward the exit, sobbing like I haven't in three years. I guess sometimes you just have to let it out. I was deeply moved by the compassion shown by my neurosurgeon—he's a truly great man. After that, there was some fear, too. I know all the potential complications. But I'll stay positive, like I always do. I'll reach out once I get the news I'm looking for regarding whether they'll take me in at Bruxell. Sending positive vibes to all of you...

feralridge3-I totally get you. I know exactly what it feels like when people start avoiding you just because they don't want to be "bothered." It’s funny how they pull away right when you actually need someone to talk to, just to take your mind off things. Honestly, I feel pretty alone too. If I could just walk out my front door without having to rely on someone else, life would be so much easier. I can count my true friends on one hand, and I'm incredibly grateful for them and their understanding. But yeah, there have been people who helped me out, only to turn around and criticize me for it. All I said was, I wouldn't wish this experience on anyone, and I prayed to God that everyone stays healthy forever.

feralridge3 said:I’ve met a few people on this journey who are in the exact same boat as you.
I’ve come to realize that where the tumor is actually matters more than whether it’s malignant or benign. I mean, sure, it could be benign, but what does that even matter if it’s growing and they can't get it out? 😢
I really hope we all find the strength to get through this. 🙂

We will. We have the strength, and we'll keep giving each other that extra boost when things get heavy. That's why we're all here—to support one another and offer a kind word. Honestly, just knowing someone truly hears you and understands makes an endless difference. We’re going to make it through, fueled by a hope that never dies.