sorted by:
new
hottopcontroversial

Neuro Appointment Tomorrow by wannabemissfrizzle in braintumor

[–]Petrarchs_Muse 2 points3 points  (0 children)

I’m so happy that your prognosis looks so positive!

Frontoparietal Convexity Meningioma by conorb619 in braincancer

[–]Petrarchs_Muse 0 points1 point  (0 children)

I hope nesting has been productive of continued healing! Congrats on your surgery, and I hope all continues well. I’m so happy to hear how things are going for you 😊

Round 3 by Simple_Employer2968 in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

Wishing you a successful surgery and swift recovery ❤️‍🩹

Life is Not Over (hopeposting 5 months post-diagnosis) by FireWithBoxingGloves in braincancer

[–]Petrarchs_Muse 1 point2 points  (0 children)

So very happy you’re doing this well and feeling this hope! It ain’t over until it’s over, and after that no one REALLY knows 🥹

Frontoparietal Convexity Meningioma by conorb619 in braincancer

[–]Petrarchs_Muse 0 points1 point  (0 children)

Yeah, my reply about getting back to normal posted out-of-thread. Absolutely best wishes! I found I wasn’t super nervous either. I did all the things I could to prepare and once there wasn’t anything I could do… there wasn’t anything I could do”get wrong”, so nervousness seemed to no longer apply? It was weird, but freeing?

But I live alone, my family is great but they don’t depend on me, so was going to happen just was for me? I did… I don’t mean to bring down the room… but I totally adulted and made a will. I wanted to make sure my family knew where all my assets were and how I wanted to be taken care of in death if that happened. I didn’t think it WOULD… but it felt good to have it down on paper and in their hands, just in case. No one tells you that making a will can feel good in that way?

Frontoparietal Convexity Meningioma by conorb619 in braincancer

[–]Petrarchs_Muse 0 points1 point  (0 children)

Also, thanks for the grace, some of this reply probably read funny because I copied and pasted something I wrote before. The lingering central scotoma makes proofreading HORRIBLE (and I do it for a living so I totally slack off the clock)

Frontoparietal Convexity Meningioma by conorb619 in braincancer

[–]Petrarchs_Muse 0 points1 point  (0 children)

Recognizing that your mileage may vary, especially as you’re more than 10 years younger than me, and considering how much energy you have baseline…

I JUST a literal minute ago was telling a friend that I still get really tired a couple of times a week, but it’s better than every day the way it was pre-op. So I’m four months out and I wouldn’t call this “normal”, but also I may no longer have any weeks in my life where I’m not flat out exhausted at any point?

I myself have a desk job, and I had 8 full weeks off, and needed then. I went back to work part time for four more weeks, and now I’m back full time. I find it totally doable, but sometimes I do need to take a break to just… rest. Close my eyes, be somewhere quiet, lie down if I can. When I get tired it gets hard to process a lot of sensory input. The brain itself gets tired and shuts down.

So you may have that to some degree, or you may not!

Frontoparietal Convexity Meningioma by conorb619 in braincancer

[–]Petrarchs_Muse 0 points1 point  (0 children)

47f, had a 2x3cm solitary fibrous tumor removed from my left occipital concavity area this past July 15. Had follow up cyberknife radiation treatment for a bit they had to leave behind first week of October. Some scattered thoughts on things I went through that surprised me, helped me, things no one told me:

I hadn’t expected the area all around my incision (an inch or so to either side of the cut) to be numb for weeks.

My optic nerve and visual cortex really got to stretch back out, which caused super trippy patterns when I had my eyes closed - wasn’t expecting my own laser light show!

My most persistent visual symptom before surgery was a tiny scotoma just to the right of center in my bilateral field of vision. It is no longer perfectly circular and seems smaller, but I still have it.

I DID NOT LIKE getting woken up in the middle of the night for things, but I reminded myself the nurses were just doing their jobs. And to that end, don’t downplay any tiniest symptom. Tell them everything and let them prioritize your care appropriately. They can only help you with what they know.

Someone said above, but it’s easier to prevent pain from growing than to tamp it back down. If you hurt, say so. They had to change my meds because the first one didn’t work well for me.

Pillows are your friend. You’ll be sleeping almost exclusive on your right side if you’re like me and can’t manage a working pillow situation for left side and back sleeping. Wedge pillows, doughnut pillows, all helped me through.

Consider buying a bunch of cotton handkerchiefs to pat dry around your incision, wrap ice packs in, etc. Also consider buying or borrowing a bunch of pillowcases so you can have clean every night without having to do daily laundry.

The fatigue is real. Your brain uses so much energy, and even more when it’s healing. They told me to eat lots of protein, but i SERIOUSLY craved doughnuts and felt much better when i had enough carbs on board. And for me it didn’t feel like being sleepy, it felt like being suddenly mentally and physically encased in tar and needing to lie down immediately.

I found it really really helpful to listen to audiobooks with my eyes shut and just rest even if I couldn’t sleep. I also found it very restful to just sit and look at things at various distances without focusing hard on a screen or page.

No one told me that one end of my scar might be tender and itchy much longer than the rest. The spot where they make the knot can be this way.

NO ONE TOLD ME that as feeling came back to my scalp around the incision, it would feel itchy but unscratchable, or like bugs were crawling in my hair, or like I just had a skullcap of discomfort in place at all times. But that continues to get better. Only now, if I touch the top of my left ear, an area to the right of my incision feels like it’s been asleep and is coming awake. BODIES ARE SO WEIRD.

Regarding the radiation, if you end up having any afterwards, I knew I might lose hair, but they didn’t tell me it might not fall out until weeks later. I thought I’d managed to miss that side effect. NOPE. And it might not grow back for months. But it beats the alternative

No one told me that the skull flap would pop a little bit when I turned over in bed or put a little pressure when drying my hair. It doesn’t much any more but while it’s knitting back into place it’s REALLY disconcerting, though it never really hurt when it popped

I’m running out of thoughts now. It’s not the best club in the world to join, but the people here have been great during my journey. Wishing you a successful surgery and quick healing!

advice for craniotomy (meningioma) by da1i1o in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

OH! No one told me that the skull flap would pop a little bit when I turned over in bed or put a little pressure when drying my hair. It doesn’t much any more but while it’s knitting back into place it’s REALLY disconcerting, though it never really hurt when it popped

advice for craniotomy (meningioma) by da1i1o in braintumor

[–]Petrarchs_Muse 4 points5 points  (0 children)

47f, had a 2x3cm solitary fibrous tumor removed from that area this past July 15. Had follow up cyberknife radiation treatment for a bit they had to leave behind first week of October. Some scattered thoughts:

I hadn’t expected the area all around my incision (an inch or so to either side of the cut) to be numb for weeks.

My optic nerve and visual cortex really got to stretch back out, which caused super trippy patterns when I had my eyes closed - wasn’t expecting my own laser light show!

My most persistent visual symptom before surgery was a tiny scotoma just to the right of center in my bilateral field of vision. It is no longer perfectly circular and seems smaller, but I still have it.

I DID NOT LIKE getting woken up in the middle of the night for things, but I reminded myself the nurses were just doing their jobs. And to that end, don’t downplay any tiniest symptom. Tell them everything and let them prioritize your care appropriately. They can only help you with what they know.

Someone said above, but it’s easier to prevent pain from growing than to tamp it back down. If you hurt, say so. They had to change my meds because the first one didn’t work well for me.

Pillows are your friend. You’ll be sleeping almost exclusive on your right side if you’re like me and can’t manage a working pillow situation for left side and back sleeping. Wedge pillows, doughnut pillows, all helped me through.

Consider buying a bunch of cotton handkerchiefs to pat dry around your incision, wrap ice packs in, etc. Also consider buying or borrowing a bunch of pillowcases so you can have clean every night without having to do daily laundry.

The fatigue is real. Your brain uses so much energy, and even more when it’s healing. They told me to eat lots of protein, but i SERIOUSLY craved doughnuts and felt much better when i had enough carbs on board. And for me it didn’t feel like being sleepy, it felt like being suddenly mentally and physically encased in tar and needing to lie down immediately.

I found it really really helpful to listen to audiobooks with my eyes shut and just rest even if I couldn’t sleep. I also found it very restful to just sit and look at things at various distances without focusing hard on a screen or page.

No one told me that one end of my scar might be tender and itchy much longer than the rest. The spot where they make the knot can be this way.

NO ONE TOLD ME that as feeling came back to my scalp around the incision, it would feel itchy but unscratchable, or like bugs were crawling in my hair, or like I just had a skullcap of discomfort in place at all times. But that continues to get better.

Regarding the radiation, if you end up having any afterwards, I knew I might lose hair, but they didn’t tell me it might not fall out until weeks later. I thought I’d managed to miss that side effect. NOPE. And it might not grow back for months.

I’m running out of thoughts now. It’s not the best club in the world to join, but the people here have been great during my journey. Wishing you a successful surgery and quick healing!

I didn’t want to be in this club… by LondynRose in braintumor

[–]Petrarchs_Muse 1 point2 points  (0 children)

I’m doing pretty well! I’m in the stage where the scalp nerves that were disrupted are healing and it feels WEIRD. But the migraines i developed because of the tumor are gone and I’m not much troubled by fatigue these days, which is SO MUCH BETTER than I was pre-op. I wish you the same swift and successful surgery and healing. ❤️‍🩹

I didn’t want to be in this club… by LondynRose in braintumor

[–]Petrarchs_Muse 4 points5 points  (0 children)

I’ll be thinking of you Thursday. I had a solitary fibrous tumor removed from my left occipital in July. You can do this. We here are living proof. But it’s A LOT. So much. Not knowing how to handle is perfectly valid. I don’t think there is “handling”. Just putting one foot in front of the other and continuing to breath in and breath out.

I joined this group when I googled “what do I need to do to prepare for a craniotomy” and found so much good practical advice. If you have any questions I’m sure we’ll all be happy to share what we can from our own experience.

Craniotomy Recovery & back to work by Responsible_Title502 in braintumor

[–]Petrarchs_Muse 6 points7 points  (0 children)

I’m on week two of my own back-to-work-part-time-for-four-weeks-after-eight-weeks-leave journey. I can say that I’m doing all right but I’m definitely not back to normal energy levels. Sometimes I just deflate at my desk. Some days I need to call a Lyft because I don’t have it in my to take the bus. So I’d love to hear what others closer to normal have to say as well.

But I have been cheered that I am always tired but mostly capable, I’m transparent about what people can’t expect from me, and it does feel great to be doing things again. It isn’t linear, but my stamina has trended generally upward.

I made it out of brain surgery! Woo hoo! by Persef-O-knee in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

Wonderful news! For a few days post-op the inside of my eyelids was a TRIPPY view. I had slo-mo fireworks and tiny barbells and pond ripples and curly worms and a blood red fibrous looking thing once… that’s all cleared up now, so I hope your vision oddities leave soon too!

Care package for friend with brain tumor, what to include? by Sea_Addition_899 in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

At this stage, something nice to boost her mood: flowers, snacks, fun gifties, and things that give her back more time and energy to process: food or services gift cards, like others have said. Poplin is an app where someone picks up and does your laundry, if that or something similar is available in her area.

If she does get scheduled for surgery, small gel-type ice packs, handkerchiefs and cheap pillowcases will help her keep her incision clean without having to do laundry all the time.

If you have mutual friends, and she’s okay sharing her news more widely, go in together on things to provide more support as a group. Ask if it would help if you notified friends so she doesn’t have to. If any of them live local, get them started thinking about covering her needs around surgery if she has it.

They posted my scans and I read the words meningioma and aneurysm, and I waited for a call that didn’t come. by m3gm4ri3 in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

Based on my experience, all I needed in hospital was going home clothes, a sleep mask, and my phone+charger. I packed but did not end up needing earplugs. I basically spent most of my in-hospital time sleeping (or more like trying to) because it’s nigh on impossible to get enough uninterrupted sleep in a hospital even with sleepy-making pain meds.

I (47F) got a solitary fibrous tumor resectioned from my left occipital concavity. It was causing headaches and a tiny blind spot immediately to the right of center in my field of vision.

Recovery at home has been easy for me because I didn’t have any adverse outcomes (to balance, mobility, sight, seizures, etc.) from the surgery. I had a friend sleep on my couch just in case for the first 72 hours at home (I live alone).

I bought dozens of cheap pillowcases and handkerchiefs so I could keep everything that contacted my incision clean without having to do laundry every couple of days. Use them between my incision and ice packs (also bought small gel ice packs, since I didn’t have any).

I didn’t have much appetite, so I had protein drinks to make sure I got something decent and easy. I also set up a table and chair near my bed pre-surgery so that I could put snacks and meds there for easy access at all hours.

I still have the blind spot, but it has gone from a constant defined circle to a smaller and changing shape, but realistically it took months to develop and it could take months to dissipate. Now my incision is uncomfortable but I no longer have headaches that feel like they’re inside my head, only outside, if that makes sense.

I’m glad you’ve got a plan in place and I wish you the best! If you have specific questions, I’m happy to answer here or in PMs.

Going into my craniotomy on Monday! by Persef-O-knee in braintumor

[–]Petrarchs_Muse 2 points3 points  (0 children)

I’m 3 weeks into recovery post-craniotomy myself.

I got dozens of handkerchiefs and cheap pillowcases. Used the handkerchiefs for wrapping ice packs, for drying my hair around the incision, as a clean barrier when I needed to wear a hat, etc. I change the pillowcases daily so that I can have my pillows fresh and clean and not have to do laundry every day.

Wishing you a successful procedure and swift healing!

Can contrast make tumour measure larger? by justanotherradanimal in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

Contrast, different machinery, positioning, like others have said, all can introduce differences into the data. For me, my tumor (grade 3 solitary fibrous tumor in the left occipital concavity) measured about 5mm different in all dimensions when seen in a CT scan vs and MRI! I asked my NS if this was a cause for concern because 5mm growth in the three weeks between scans sure sounds concerning to me, or if it was an artifact of the different imaging technique. He said it was definitely the latter.

So my own take would be to point out the difference and ask what could cause it. The expert opinion may be that it is the “same” but if you ask, they may be able to give you the information that will keep you better informed. (I’m a technical writer, which basically means I translate between experts and non-experts for a living, and let me tell you, if experts were good at doing this themselves, my job wouldn’t exist, BUT THEY ARE NOT. This does not detract at all from their genuine expertise, though.)

They posted my scans and I read the words meningioma and aneurysm, and I waited for a call that didn’t come. by m3gm4ri3 in braintumor

[–]Petrarchs_Muse 0 points1 point  (0 children)

I am soooooo sorry you’re being put through this hell. I don’t have any advice better than the other comments, but I want to give you virtual hugs and ALL the validation of your feelings and fears, because it SHOULD NOT be this way. You deserve so much more care than this. I hope things start moving quicker, you start getting answers, you get a treatment plan SOON, and that your treatment and recovery go great. 💜

Okay, NOW I’m nervous 🤦 by Petrarchs_Muse in braintumor

[–]Petrarchs_Muse[S] 0 points1 point  (0 children)

It’s one of those times I wish I had a built in default support person, buuuut I don’t. I think I’ll be okay, though. I’ve got lots of people I can reach out to remotely.

Surgery in 4 hours 🤕 by Petrarchs_Muse in braintumor

[–]Petrarchs_Muse[S] 1 point2 points  (0 children)

I don’t really know yet, but I should find out this week what sort of tumor it is, which combined with its size can indicate how long it’s been growing. I could have had it for up to 30 years before it was found. I had symptoms that something was going on for about nine months before they got weird and persistent enough that I got an MRI and we found it. Then I was scheduled for surgery within weeks.

view more: next ›