It’s not a big deal, but it definitely has me very curious because it seems so random. It’s like one little random tuft of hair and it’s several inches away from my incision.
https://ibb.co/yhKzmyr
https://ibb.co/h7rD6TZ
The sutures in my incision itch like a sonofabitchand and when I notice myself scratching it, I stop immediately… But now things are looking a little gnarly and I’m nervous. Is there anything that I can do to help it itch less?
My mother was recently diagnosed with having a meningioma in her brain of which we still don't know yet if it is cancerous or benign, but that most likely the surgeon is leaning towards doing a surgery. But I wanted to look for a 2nd or even 3rd medical opinion, but I wanted to find the best of the best top 3 neurosurgeon clinics/hospitals in Florida that have expertise in this particular field with meningiomas. I have found that the Mayoclinic in Jacksonville, FL is considered the top #1 in the state and the 25th best in the country, and so I will use that is my “gold standard” but I still wanted to look for two other places, and in particular one in Tampa because I live close to there. Apart from asking on here I am doing my own research, but I thought any extra help wouldn’t hurt, whatever I don’t find from my own searches maybe you all know of already or could find places that I don’t come across. I really look forward to and appreciate any help.
Thank You
General info summary: 30F, 5'6", 180lbs, white (American with mixed European descent, primarily Scandinavian, German and Irish), a natural redhead, basic medications (tylenol as needed, multivitamin), never drugs, never smoking, max 6 beers a month (heavy drinker until mid-20s)
Topic of post: irreversible vision loss due to 17x18x19mm primary optic nerve sheath meningioma, completely located within optic cavity, located toward the rear of the cavity and toward the nose
Duration: 12 years of symptoms--2.5 years of advanced symptoms, which triggered diagnosis. Progression of advanced symptoms: loss of color vision--red/green then blue/purple, significant additional blurring, occasional double vision, headaches and facial pain (personally attributed to muscles controlling eye movement), significant field of vision loss, significant paling of optic nerve, significant thinning of optic nerve lining(?) (at least 50% I believe), significant reduction in field of vision, motion only/focal blindspot (good peripherals).
Other medical issues: 3 thyroid nodules (monitored annually), frequent irregular moles (family history of skin cancer, monitored every 6 months), assumed/undiagnosed depression/anxiety, fairly high stress job and high stress family.
Bonus/example: my brother (32M) is profoundly autistic (nonverbal, non-communicative, has seizures, can't feed himself--life consists of walking around the house staring out windows with his hands down his pants). He lives in a group home where a staff mistake lands him in the ER every six months or so (nonresponsive due to choking on/swallowing a rubber glove, punched in the head by a roommate that threatened to kill him, 1st and 2nd degree burns from unknown cause--staff and roommates claim to have not seen anything). Sharing for family history since one doc commented there's a correlation between having this tumor and having an autistic sibling (never found evidence of this in journals but never really looked), and as an example of lifelong stress I have.
Additional family history of: cervical cancer (mom), breast cancer (paternal grandma), heart attack (dad, maternal grandpa), stroke (4 paternal aunts/uncles) and more
Ok, I don't know that you need all of that, but trying to be complete. I'm happy to provide any other information (including scans) and will respond as promptly as I can.
I am seeking additional opinions and understanding of why I should preserve the vision in my eye. My neuro-opth recommend cybe
... keep reading on reddit ➡2 years ago I had surgery to remove a benign spheno-orbital meningioma. Surgery was a success, and for that I am grateful, but in the process, I incurred some damage to nerves that are causing severe eye dryness, limited tearing and sensitivity, and have been told it’s degenerative and can only be slowed by constant, preservative-free, eye drops, warm compresses, ointments, tear duct blockers, and taping my eyelid shut while I sleep. According to my opthomologist, my eye just isn’t getting the nutrients it needs and If/when I needed a corneal transplant, I wouldn’t be a good candidate for it since I have these dead nerves and a new one probably wouldn’t take. I have also developed an ugly, noticeable pinguecula that ballooned up pretty quickly and is starting to cross the border to my iris.
My question is, are there any advances in the treatment of orbital trauma on the horizon that I can be hopeful for? While I would very much like to preserve vision in my eye, I also want to get rid of this ugly pinguecula that is making me self conscious and would even pay out of pocket to have it removed if I thought the surgery success rate was higher than 40%.
Hello, I’m writing this to try and help people by giving information on my own experiences with a meningioma tumour I recently was diagnosed with and had removed. I'm hoping this will help people, by putting things on reddit, which can be a great place for information.
My experiences will likely differ from your own. So here is some background information on me to add context. I am Male, mid 30’s and live in the UK. My treatment was performed by the NHS.
Around a year ago (November 2019) I began to have some dizzy spells and by February 2020 I had passed out twice. At this point we believed I had a problem with low blood pressure and was put on tablets to fix this. But there was no change. I asked for an MRI scan after a number of months of being on blood pressure tablets with no change to my dizzy spells. I had an MRI Scan in August of 2020 and was called back that day by a doctor at the hospital. They explained to me that I had a type of Tumour of the Meninges, this is the outer protective layer of your brain. They explained that these were normally benign and slow-growing and that the Neurology department would meet in a few weeks to discuss my case and whether to operate or use a “wait and see” policy to see if my symptoms worsened.
It’s worth noting here that the position of my tumour was on the left-hand side of my head. I suffered from tinnitus and had some tenderness to the skull on that side above my ear, I also had hearing loss. The problem with this and why I thought nothing of it is because my mother was born deaf in that left ear and my sister was born entirely deaf. I had always put any issues with that ear and, indeed, that side of my head/skull down to my genetics inherited from my mother.
As it turned out, the tenderness I had been feeling was actually that the tumour had exerted pressure on my skull (actually damaging it) and the tinnitus was also a symptom of the tumour pressing on that side of the skull. Interestingly my doctors were unsure if the dizziness at that point was actually being caused by the tumour.
In October it was decided that surgery would be needed as my tumour (whilst thin) was fairly spread out and quite large. I can only estimate give the previous symptoms I had been living with regarding the skull tenderness and tinnitus around my ear that I had actually been living with this Tumour for at least 7 years. With very little effect on my day to day, other than the aforementioned symptoms that I believed to be jus
... keep reading on reddit ➡
I had 2,5 cm meningioma removal 4 months ago. It was on right parietal lobe. Before surgery i didnt have seizures. I was on keppra for 10 days after surgery. After 4 days i stopped taking keppra suddenly i felt a weird feeling on my left part and i lived something that i learned its called ‘optic ataxia’, i felt dizzy, about 30 min i lived those feelings and then i fainted for the first time in my life. My mom told me i didnt shake or squeeze myself i opened my eyes in couple of seconds, but i dont remember anything until that time i went to ambulance. After that i didnt faint again. On my 3rd month MRI control they found 23mm21mm18mm subacute subdural hematoma. And since surgery i have a weird feeling on my left part when i touch or someonelse touch, like hyperesthesia and paraesthesia. I am wondering is it a high possibility to have seizures again? And those feelings because of that hematoma? Will it dissappear? Should i have to use anti seizures forever? Help please
Hi, I'm posting on behalf of my mother (61) who was diagnosed with a benign tumor on her optic nerve sheath (Optic Nerve Sheath Meningioma) 11 years ago. Back then she was experiencing a gradual "dimming of the lights" in her left eye, and got an MRI which confirmed the presence of the tumor. She was told she had two options:
- Radiation Therapy
- Surgery
My mom was very apprehensive to both of these routes; she has a friend who received the surgery for this same condition, who came to regret it due to her eyesight being worse afterwards than before.
Fast forward to today, my mom is now completely blind in her left eye. When we talked about it a year ago, I asked her if she still had sight in that eye and she replied that she did, but only faintly. She could still see outlines. Now there are no outlines, no anything. Which seems to indicate to me that it's progressing faster than before.
Has anyone here had this condition and received treatment? How did it go? What was recovery like?
I understand that usually treatment comes from a proactive perspective, trying to prevent things from getting worse. But seeing as technology has come such a long way in the last decade, I'm wondering if there are any options to restore some of her eyesight. I think she would be more open to surgery now if there were a way to decompress the optic nerve by making more room for the tumor to grow.
If there is a better sub to post this to, please let me know. Thank you for your help.
Hi all, if this is not the correct place apologies in advance.
Feeling a little down today. Was diagnosed about a year ago with what the MRI report said was a meningioma in the frontal parasagittal convexity left posterior region.
Last year it was 19mm by 8mm by 13mm. This year it’s 23mm by 11mm by 18mm. I have an appointment in a few weeks time with the same neurosurgeon I saw last year to get further advice. His previous recommendation was watchful waiting.
I’m having to go private as after a year I still haven’t had an appointment through from the local hospital via the Australian health system. This is also causing me additional stress.
I’m assuming that’s considered a small meningioma but Dr Google tells me the location may be troublesome to remove?
Ultimately I think I wasn’t expecting it to have grown. It’s shaken me up more than I thought it would
TLDR new radiation equipment and software is so much better now that dogs should live "2-3 years" with radiation alone, vs. older studies showing 1 year survival with radiation or surgery....or 18-24 mos if those combined.
My 11 year old lab mix had a bad seizure 3 weeks ago. MRI showed meningioma brain tumor- the most common brain tumor in dogs. It was big, so prognosis likely 2-3 months with no treatment. Surgery couldn't remove it all due to proximity to optic nerve- too dangerous. Same with stereotactic radiation (which is 1 or 2 days high dose) also due to proximity to optic nerve.
So safest option was regular "IMRT" 20 visit radiation, or that combined with a surgeon removing accessible part prior to radiation.
So after 2 surgeons said to remove as much as possible, I finally got to see the local oncologist. High volume clinic, 2 weeks wait to see him. He told me forget about surgery, and that the new radiation equiptment (VMAT-Arc) is so much more accurate at delivering radiation, and so much safer for dog in not hitting surrounding tissue, that old studies showing 1 year survival with brain meningiomas are history. He said my dog should be around 2 or 3 years from now with just 20 visit radiation, and less side effects now and later due to accuracy. Granted it’s one doctors opinion, but he probably treats more of these than the total number of dogs in those studies.
Amazing machines- they go around the body in an arc and hits the tumor from infinite possible angles, and are the state of the art for treating humans also.
If the tumor is easily removable, he might have recommended that first, but the point is don't be too upset if tumor not removable, in that things may still be ok. Unfortunately we are talking $7500 plus due to the million dollar price tags of these machines, but I drive a used Subaru so I have money to treat my dogs when they need it...and my insurance pays good part. This is exactly why I have pet insurance, so I don't have to make big decisions based on price. EDIT not sure how many such VMAT- arc radiation machines are in vet clinics around country, but there’s a bunch. A few in my state alone. And if your dog can get stereotactic, unlike mine, it would be 1 or 2 treatments over 2 days, so if you can travel for a few days your dog can get it somewhere. Good luck...and a trick I am using to feel better is remembering that meningioma is not really a cancer, it is a growth, unlike "Glioma" tumors. Glioma survival time g
... keep reading on reddit ➡Hello, me again! Since my headaches have started resulting in long term effects like short term memory loss, impaired concentration, reduced balance and some long-sightedness. One of the possible outcomes I heard being thrown around was "meningioma", and I just wondered if anyone in this group had any experience of them? Thanks!
Has anyone been diagnosed with both iih + meningioma? Thank you in advance for sharing your experience.
The doctor is not worried. She said they are common and rarely cause symptoms or need treatment. But she did say that if I continue to have headaches she'll send me to a neurosurgeon for an evaluation.
I'm not really worried, just surprised and trying to understand what it is and what to expect.
Has anyone had an experience with meningiomas that they'd be comfortable sharing?
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UPDATE #3 I have marked this request as fulfilled, because today we were approved for food assistance and we were able to get some of our monthly payments deferred. We are also awaiting word on additional assistance from a program through my husband's job.
All of the help and information here has been GREATLY appreciated and the advice/resources have helped immensely. I am still open to any advice regarding his condition and any other information that you feel would be helpful. Thank you all so much. I promise that once we are on our feet, I'm giving back within this community.
TL;DR Husband has brain tumor and can't work. Surgery for removal is likely tomorrow. Already in dire financial straits from COVID19 outbreak. Looking for ANY help. Any resources. Resources to help us possibly make a way while he is unable to work. Anything. Jobs that I could possibly take that would allow me to pay the bills, pay for childcare, and maybe be here enough to help my husband (I haven't worked in a structured environment outside of the home in 14 years). Anything. Please. Words of encouragement. Anything.
UPDATE: I have updated my Amazon list and will update it again when I get the chance to look through the Prime/Pantry items and good deals. :) Thank you all from the bottom of my heart for your help, concern, kind words. I have the social worker's number at the hospital now. And I've reached out to a few other places. I appreciate you all. This makes me not feel so alone in this. https://www.amazon.com/hz/wishlist/ls/SB6508VIJD1M?ref_=wl_share
UPDATE #2 So, the hospital did an angiogram and noted vasospasms so they said no to surgery, put him in ICU because he was at an "incredible risk" of stroke, had him on steroids to reduce swelling and hopefully fix the spasms. They gave him another angio today to check the spasms and they were better but not enough to do surgery. So they released him with steroids today, submitted the surgery to insurance for approval, and now we're waiting for a call to schedule that. I am SO happy to have him home right now, at least until surgery. According to the doctors, he will be out of work until AT LEAST July but we will have an update on that after surgery, depending.
Last week, my husband began experiencing sudden, intense, and debilitating headaches. They would subside almost as quickly as they came on, so he ignored them at first. By Satur
... keep reading on reddit ➡28 years old female. 3 years ago 2,5 cm meningioma discovered on right front side of my brain. That time doctor told me no need surgery ,need to watch every 1 year. But because i am so scared to hear something bad i didnt have MRI again. I dont have headache or lack of strenght. But i have a pulse in my vision when i focus somewhere. Is this could be about meningioma? And when i had MRI 2011 there was no meningioma, clear. From 2011 to 2017 2,5cm meningioma means its a bad type of meningioma?
I know this is a question for a doctor, but i can hope do get some answers from here. Basically ive been on it 10ish weeks and have been getting a lot more headaches recently. But i also have a cold so it could just be that. Just my anxiety isnt having a good time over here over thinking the headaches are from brain tumours...
Hello, I’m writing this to try and help people by giving information on my own experiences with a meningioma tumour I recently was diagnosed with and had removed. I'm hoping this will help people, by putting things on reddit, which can be a great place for information.
My experiences will likely differ from your own. So here is some background information on me to add context. I am Male, mid 30’s and live in the UK. My treatment was performed by the NHS.
Around a year ago (November 2019) I began to have some dizzy spells and by February 2020 I had passed out twice. At this point we believed I had a problem with low blood pressure and was put on tablets to fix this. But there was no change. I asked for an MRI scan after a number of months of being on blood pressure tablets with no change to my dizzy spells. I had an MRI Scan in August of 2020 and was called back that day by a doctor at the hospital. They explained to me that I had a type of Tumour of the Meninges, this is the outer protective layer of your brain. They explained that these were normally benign and slow-growing and that the Neurology department would meet in a few weeks to discuss my case and whether to operate or use a “wait and see” policy to see if my symptoms worsened.
It’s worth noting here that the position of my tumour was on the left-hand side of my head. I suffered from tinnitus and had some tenderness to the skull on that side above my ear, I also had hearing loss. The problem with this and why I thought nothing of it is because my mother was born deaf in that left ear and my sister was born entirely deaf. I had always put any issues with that ear and, indeed, that side of my head/skull down to my genetics inherited from my mother.
As it turned out, the tenderness I had been feeling was actually that the tumour had exerted pressure on my skull (actually damaging it) and the tinnitus was also a symptom of the tumour pressing on that side of the skull. Interestingly my doctors were unsure if the dizziness at that point was actually being caused by the tumour.
In October it was decided that surgery would be needed as my tumour (whilst thin) was fairly spread out and quite large. I can only estimate give the previous symptoms I had been living with regarding the skull tenderness and tinnitus around my ear that I had actually been living with this Tumour for at least 7 years. With very little effect on my day to day, other than the aforementioned symptoms that I believed to be jus
... keep reading on reddit ➡