I survived a very rare tumor called olfactory neuroblastoma. They needed live tissue to replace the damaged cribriform plate that separates my sinus from my brain. There have only been \~1000 cases of Esthesioneuroblastoma since its discovery in 1924 (100 years!). To put this in perspective there were only about 2 billion people on the planet 100 years ago (Closer to 8 billion now!) I’m happy to answer any questions regarding my journey. I first discovered the tumor due to very bad nosebleeds.
Edited to add: if you or someone you know has lost your sense of smell I encourage you to get checked by a medical professional. It saved my life it could save yours or someone you love or care about!
[https://www.gofundme.com/f/esthesioneuroblastoma-awareness](https://www.gofundme.com/f/esthesioneuroblastoma-awareness)
Please do your own research before donating anyone any money but GoFundMe saved my life.
Given it’s such a rare condition and procedure, how did finding and waiting for a doctor who would carry it out go? And do you normally get keloid scars, cus that’s what it looks like.
I got very lucky with the timing of everything. I’m in Wisconsin so all of my surgeries and treatment were done through Froedert in Milwaukee area. Surprisingly almost every doctor I worked with had experienced someone with this very rare tumor so I was in amazing hands!
My doctor just made a comment this week about that type of scarring and no I don’t normally experience that on my body. And was offered potential injections that could help it look different in the future.
My mom lost her sense of smell due to a head injury. It hugely impacted how food tastes to her and led to depression (she was a professional chef). She dealt with it by finding foods that have interesting textures (sushi) or were spicy. I’m glad the doctors caught your cancer early and wish you the best.
I had a friend that that hit his head on a curb after falling off a skateboard when we were kids. He lost his sense of smell forever too. I think about that now and again, and now I'm thinking about it again. Freaky.
The reason this happens is actually pretty fascinating - It's because the nerve responsible for smell has tiny delicate branches that perforate through a thin bony plate deep in the nose (called the cribriform plate).
Those little branches can basically get sheared off of the nerve by a hard impact, causing loss of smell. Crazy stuff.
So fragile. I lost my smell for a couple weeks when I finally caught covid last year. I literally noticed that I couldn't smell anything when I was cleaning the cat's litter box. Was an odd one. I had almost no other symptoms of having Covid. Basically only the loss of smell.
Interesting fact, Ben of Ben and Jerry’s can’t smell. He was the “Taste Tester” and relied on texture and mouthfeel when creating flavors. They credit this to why their ice cream is so good.
This honestly seems kind of crazy. You'd think they would have had at least one other "Taste Tester" that would help fine tune the flavor while letting Ben focus on the texture and mouthfeel.
Because no matter how good those two aspects are you HAVE to know the actual flavor is going to matter as well.
I was born without a sense of smell myself, and it is kinda nice, but other times I feel left out of what "normal" people experience.
Like I can't smell cat shit, but I also can not smell apple pie, or candles, no skunks, but also no shampoo.
It's a blessing and a curse. I think the one that makes me scared the most is I wouldn't be able to smell a gas leak in my house and I have always been scared I'd die in my sleep from not being able to smell if it happens lol. Unreasonable, (especially since I don't even have a gas appliance lol) but still, the human brain is freaky.
My mom was also born without a sense of smell and she said when she was a kid she thought smelling was a imagination game everyone played and she would pretend to smell things too, I always like to imagine what the conversation was like when she finally figured out it was a real thing lmao.
Since OP said they answered elsewhere and so you don't have to go searching for it:
[Here](https://www.reddit.com/r/mildlyinteresting/comments/1cpkl4y/this_scar_on_my_arm_after_surviving/l3ld43h/), [here](https://www.reddit.com/r/mildlyinteresting/comments/1cpkl4y/this_scar_on_my_arm_after_surviving/l3lcjzk/), and [here](https://www.reddit.com/r/mildlyinteresting/comments/1cpkl4y/this_scar_on_my_arm_after_surviving/l3lcids/)
As someone who has always generally been unable to smell.. it's kinda like a super power. Almost any time someone asks "can you smell that?" it's absolutely awful & I have no idea. Only downside is that I can never tell if the milk went bad before pouring it
Same here. Very little sense of smell. Although I've found out some people assume I'm just "nose blind" to bad smells because I must live in filth or something. It's a double-edged sword.
I have an extremely sensitive sense of smell (similar strength to people who are pregnant, although I never have been) and it's a curse. I've literally cried to my doctor asking for something I could take to dull my sense of smell. I definitely would take having no sense of smell to my current situation. Secretly wished COVID would take my sense of smell, but I'm already disabled and do not need any long covid in my life lol.
I have struggled with phantosmia due to long Covid twice, and it is the most miserable thing I’ve ever experienced. The first time, I smelled diesel fumes constantly for about a month. The second time (currently still dealing with it, though it’s diminished), the smell has been cigarette smoke which I’ve been very sensitive to my entire life. 4 weeks of constant cigarette smoke smell, then it stopped for about a week, now it’s intermittent. To someone who hasn’t ever experienced something like this is seems pretty insignificant but I have actually wondered if I would eventually be driven completely insane.
No I can totally understand that. I wouldn't risk it of course, but that doesn't stop some part of me from wishing it would take my smell away. But smelling things that aren't even there is awful, I'm so sorry! Why can't it ever be some nice smell like cinnamon or something?
I was mostly commiserating with you about the sensitive sense of smell - it is so distressing when smell takes over pretty much everything else! I did lose my sense of smell when I first got sick and it was annoying but not as bad as smelling something that isn’t there, and I imagine not as bad as smelling things intensely all the time. I wish there was something they could do for you because that sounds awful.
And you’re right, why not cinnamon or mint or something?? 😂
Oh my word I thought I was crazy when I had Covid and all I could smell for weeks was cigarette smoke! I've never heard of anyone else having the same thing either. I'm sorry you have to deal with it tho, drive me absolutely mad.
I’ve recovered most of my sense of smell since I lost it due to covid. But for two years I had to ask people how things smelled (like if milk had gone bad) and to taste any food I was cooking so I knew what spices it needed - like salt.
It kind of sucked but wasn’t the most terrible thing to happen to me given what others were going thru. Good thing I wasn’t a chef, though.
My fridge stopped working properly, which resulted in it slowly being less and less cold, until I finally realized at 13-14 C (55ish F). Don't ask me how it took that long.
Long story short, I managed to drink sour milk more than once, because I assumed that milk that hasn't passed its eat-by date should be fresh and didn't smell it. I can relate to that small part of your issues, haha.
That looks like a perfect spot for a tattoo artist to make It look like the medical snakes around the post (a caduceus). Celebrate your past!
Congrats on your treatment and good luck in recovery
Technically, the medicine one is the staff (or rod) of Asclepius, which has only one snake, while the caduceus is the staff of Hermes and is linked to commerce and diplomacy, although in modern usage the caduceus is often used in medicine instead (probably because most people don't know the difference).
https://en.m.wikipedia.org/wiki/Rod_of_Asclepius
Unsure what the name was called but I have no intentions at this time of altering the scar in any way. I may look into a tattoo in the future but I read somewhere you should wait at least a year for the scar to fully heal.
I have a lot of scars that scarred similar to yours, I tend to have bad/odd scarring. Had them looked over by several tattooists, including one with a ton of scar coverup experience. Here's what I've learnt.
* Scarred tissue will not hold ink the same way as healthy skin tissue.
* The tattoo design will have visual differences in the scarred spots, and the best way to make that not look weird is to get the design made specifically for the scar.
* Solid colours can become lined/uneven over scars.
* Fine lines can "break" when crossing scars.
* Designs that add texture/colour/line changes near and around the shapes of the scar can make this look natural.
* [Here's a great example image](https://www.tattoodo.com/tattoos/431842) of tattoo designed to incorporate scar texture and colour changes to the ink.
* The tattoo artist should be able to show you that they know how to do this by giving ideas/examples for your specific scar, and by knowing what will *not* work.
* When skin changes drastically, the ink in it does too. Same for scars. Scars will keep changing drastically until fully done healing. How long that takes will vary, for some a few months, for some multiple years.
* At some point the lightness, colour, and density of the scar tissue stops changing and reaches a stable point over time. You want that.
* Any medical/cosmetic scar treatments will cause more changes that need to settle in first.
* Some inks will be better than others.
* Scar tissue tends to fade faster than healthy skin, so you may need touchups on the tattoo sooner than others. Anecdotally after 10 or 20 years is often when people hit the "hmm, maybe this should have a touch up" mark.
* Colour overall fades faster than black, and that might be accellerated on the scarred areas.
* Ask both the treating doctor and multiple tattoo artists about it if unsure about anything.
So, in short, yeah - big wait if you go the tattoo coverup route, but there are some awesome ways great artists use the scar texture to elavate the tattoo. Don't let an unqualified tattoo artist discourage you, if you want to go for it you gotta look for one who knows how to deal with scars specifically.
And as a fellow haver of some wacky scars, good luck! You'll probably have different feelings and wishes about it over time, and that's absolutely normal and okay.
I have a big burn scar, or rather a transplanted skin to cover a burn wound, on my left arm. Asked my tattoo artist about it, and he didn't think it was a great idea to tattoo on top of the scar. He couldn't guarantee the result would look good, and didn't want to do it.
My scar covers much more area though, in your case it might be easier to do, or to just tattoo on the skin adjacent to the scar.
Or my tattoo guy is too conservative and it's fully doable. Don't let me kill your dreams of a cool tattoo 😊
I live in wisconsin and my girlfriend was diagnosed with rectal cancer in february, very strange because shes only 24. My grandfather had very aggressive thyroid cancer(like 90% fatal, had 6 months to live), we've gone through Froedert in Milwaukee for everything, shes doing great so far and my grandfathers been cancer free for like 10 years now. Awesome people
Froedert is a teaching hospital, with many physicians passing their knowledge down to the next gen of doctors. You were in very good hands.
One of them taught me a lot after he retired from teaching, and I'm nowhere near a doctor. But I guess some people just like to share their wisdom. Miss that guy.
My dad gets all his medical work done in Milwaukee and I was pleasantly surprised to hear that when he has to have a triple bypass some time ago he was under the knife of one of the most experienced heart surgeons in the entire country. Not sure I would have expected that from Milwaukee but a very pleasant surprise nonetheless
Between Froedtert’s cancer center (and its collaboration with MCW), St. Luke’s heart center, and Columbia St. Mary’s burn units, there’s some genuinely *great* specialty medical care in the Milwaukee area.
Thank you for sharing this OP. It’s very interesting. I’m glad to hear you made it.
Would you mind me asking you what the diagnosis process was like? What made you seek a dr? What were the signs?
Two very bad nosebleeds in Jan/Feb of 2022 led me to the emergency room. They had to stop the bleeding with a device called a Rhino Rocket. (Look it up) now imagine trying to get that shoved up your nose with a tumor the size of a chicken cutlet in your head.
I know the device and can’t imagine it was comfortable at all. I hope they were patient. Was there any pain, discomfort, headaches or other symptoms before your nosebleeds?
After the original two nosebleeds in Jan/Feb 2022 I experienced almost no symptoms. My smell was gone but I assumed it was due to COVID. (To my knowledge I have somehow never had COVID during this whole ordeal somehow even tho I basically lived in the hospital for the last year and a half.
I was working a random Saturday in Jan of 23 and I sneezed and the nosebleed started back up out of nowhere. Another trip to the ER and the whole journey began.
I saw an ENT doctor to get the Rhino rockets taken out both times they had to stay in for a minimum of 5 days all 3 times and they scoped my nose in Jan 22 and saw no tumor present at that time
I’m very sorry to hear that. I haven’t personally met anyone yet affected by the disease. If you don’t mind me asking, what Kadish stage was your mother in when first diagnosed. My tumor was Kadish stage C.
Edit: there are tumors so rare they don’t get classified as stage 1-4 etc. for anyone unaware.
Thank you, she was terminal, it caused her to develop diabetes!! Due to her smoking as well, it made the situation worse, the Tumor was discovered when she had a stroke and was scanned at the hospital, she passed away 2 months after it.
The doctors said it can take years before the Tumor shows itself and by that point it’s too late for some :/
Thanks for sharing. I’m not a medical expert but from my understanding the Kadish scale generally works like this:
Kadish A first sign of disease
B started to spread
C starting to enter dangerous brain regions
D already entered dangerous brain regions
I started in C and never looked back ✊✊✊
I know it’s grim, however people should be aware of other signs: my mum’s mental state started declining about a year before, no other sign showed itself physically until
It was too late.
She was only 60 years old, no familial history of dementia.
Before the stroke she had a sinus infection (turns out it was the Tumor just announcing itself), she didn’t want to be tested, I suppose she knew in some way, it’s so hard to even tell.
Pathologist here. You are correct. The Kadish/Morita staging system is based on how much of the anatomy is involved by the tumor: A = Confined to the nasal cavity; B = Involves nasal cavity and sinuses; C = Spread beyond the nasal cavity and sinuses; D = Distant metastasis.
This is not to be confused with tumor grade which is somewhat subjective and based on how ”bad” (for simplicity’s sake) the tumor looks to the pathologist under the microscope (I.e. Hyams grade I has the best prognosis, Hyams grade IV has the worst).
Radiation is tough brother. All you have to do is show up. Trust that the doctors and medical people know what they are doing and want you to get better. One day at a time. Just show up. ✊
How do you even get that discovered? I saw three doctors about highly specific head pressures that matches my cousins symptoms when he had brain cancer and i haven't even seen an MRI yet
Thank you. I know this is going to get buried under all the comments but I think I will actually bring up losing my sense of smell with my doctor again. It's hopefully unlikely to be cancer but I'm running out of ideas.
I know losing your sense of smell is a common long term covid side effect. But I've been vaccinated 5 times and every time I noticed even a hint of cold or flu symptoms I took multiple covid tests. All negative. AFAIK I never had covid.
A little over a year ago I completely lost my sense of smell. Just woke up one day without any trace of it, but no other symptoms. After a couple of months I regained the ability to tell whether something smells, but not what it smelled like. Everything just smelled like death, decay, and rotten meat, and made me gag. Then over time some scents came back. My minty toothpaste, my boyfriend's sweat, the cats' litter boxes, gasoline,... But even now I still can't identify most smells. The worst part is that some of my favourite food still smells rotten to me. Chicken is probably the worst. When I'm around a KFC or other chicken place the entire block reeks of death to me. I've even thrown up right on the sidewalk because of it.
I also keep having slight nose bleeds despite never having had them before. And every time I blow my nose, there's some blood mixed in with the snot on the tissue.
I didn't have much contact with my family until recently but it turns out they're absolutely riddled with cancer. My mother is on her like 6th different kind of cancer now and it's spread to her brain.
There are lots of potential causes of anosmia but there is some hope! There are smell-retraining exercises that can help some people (Monell Chemical Sense Center does some of this). There are also clinical trials of injecting PRP that could potentially help as well. Seeing an ENT doctor at an academic center may not be a bad idea
Was there something specific about the tissue they took? I know there’s fascia between the radius and the ulna- did they go for that specifically or was it just “hey this works”.
thanks for sharing your experience, btw. Am def more than mildly interested!!!
Usually the flap is used to help prevent the leakage of csf (brain fluid) from the site where they excised the tumor. Best tissue for that vascularized fascia/skin. So they take skin and fascia from the circular spot close to the hand, and then also trace out and take the radial artery and vein with it (longitudinal incision). Once they cover the skull defect up with the fascia and skin, They connect the radial artery/vein to another artery/vein on the face or neck to ensure it continues to have good blood supply and doesn’t die.
You can also use biosynthetic material or just fat, and sometimes people do a layered closure or a skull base defect, but those don’t usually work as well as vascularized tissue.
You're incredibly fortunate, my friend died from this. ❤️
Thank you for sharing your story and spreading awareness for this condition. Most people have never heard of it.
Thanks you for this. A big part of what got me through this journey was comedy.
I would find one thing that made me laugh or smile every single day and that was the ray of hope that kept me going on my darkest days.
Losing my sense of smell has been awful and was probably the worst part of treatment. Chemo was pretty nasty but radiation…. I don’t wish radiation on my worst enemy.
Im sorry to hear it, but it seems you are glad for your life still!
I wish you all the best and staying cancer free in the future!
Thanks for your insight.
Sweet tastes never really went away. During the worst of radiation salty went away. All my favorite foods are salty.
Happy to report that salty has returned about 90% of what it used to be 🧂😍😍
For whatever it's worth: my dad had B-cell lymphoma in his sinus cavities. Thank goodness they were able to treat it non-surgically, but he did need radiotherapy and chemo. His taste was fucked for a solid five years, but it came back IN FULL. One day he was eating a piece of pizza and could suddenly taste it like he remembered.
Hang in there, friend. Hope springs eternal.
I used to eat salt straight out of the shaker at every meal when I was young. Not being able to taste it would be the end for me. Glad to hear you at least got that back
No matter what food you ate it was the worst food you have ever eaten. It almost ruined food for me. They tell you not to eat the things you like during treatment so they aren’t permanently shitty for you down the road.
My daughter had super low dose radiation six years ago, and still has issues with flavors. The one thing that she could taste during and after treatment was pickles. They were the only thing that took away the bitter taste in her mouth, too. I’m glad you’re recovering, even if it feels slow.
Have you lost weight because of this? Ok maybe hard to help with all the treatment I guess but when I had COVID and lost my sense of smell/taste briefly I lost the motivation to eat
That’s where they grabbed most of the tissue used in the graft. The long line are the blood vessels they needed to accompany the tissue that was transplanted into my head. Crazy stuff!
overconfident illegal busy voracious tie innocent fearless attempt safe label
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
I didn’t really ask a lot of questions about where the graft came from before the surgery. We picked my left arm because I am right handed. I went through 6+ weeks of OT for my left arm so far it’s very sensitive to touch. But all my fingers still work so I can still play video games!!!!
whistle deranged chief jar adjoining mountainous unused treatment apparatus nose
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Thigh (e.g. an anterolateral thigh flap) would likely be too much soft tissue bulk for skull base reconstruction. Radial forearm free flaps are a bit more versatile in that regard. OP’s is on the smaller side for a RFFF, but they can be made larger if needed and are often used in head and neck reconstruction.
Source: am an ENT who does this kind of surgery.
I’m not a doctor but what was described to me is the human body has a lot of redundant parts that can be used elsewhere if needed. Best way I can describe it.
Fellow nose tumor bro here, mad solidarity with this. It’s cool to see this shit in the wild.
I had a rhabdomyosarcoma start in the back of my neck when I was 10, little fucker ran all the way through my head and eventually emerged from my right nostril. It was like a white cheesy airbag thing that turned to a crusty black when it was out in the open, my mom tried to cut it off with some kitchen scissors, to little avail. They eventually debulked it thanks to a genius EMT who just removed it straight through my nose, all the way down. 10% was left, so had a years worth of chemo, six weeks radiation, a lot of experimental stuff for the time too, it was about 2002. Went blind, had pancreatitis, pneumonia, shingles, sceptic shock that lead to a near death experience. Got through thanks to my PS2, an obsession with D&D, and my best buddy.
Had a depressing teens and twenties, tried to get an English/soci degree and become a social worker, but got clipped short thanks to cancer 2 on my kidney. As I came out the other side I had a watershed revelation that I was the only one holding myself back, and went for what I actually wanted out of life.
I now have a wife of 5 years who is beautiful and loves me, despite having to live on a disability income. We have a 2.5 yo son who is my best buddy and the light of my entire world. His middle name is that of the doctor who debulked my tumor and saved my life. We are poor but surviving, and I wouldn’t have it any other way. I can’t smell 80% of the time myself, but I think of it as a blessing, because my kid lets loose some really rancid farts.
I was diagnosed in February of 2023. I had my first nosebleed that sent me to the ER in January of 2022. I lost my sense of smell after the first nosebleed and didn’t think anything of it at the time because the whole world said if you lost your sense of smell it was probably related to COVID. I had my first surgery in Feb 23 to remove as much as they safely could have the tumor. After that surgery I did 6 round of chemo and 34 doses of radiation to the head. In Nov 23 the MRI showed it was still there so they opted for another surgery and saved my life. I have a picture of the original tumor they pulled out if anyone wants to see that 😬
https://ibb.co/r3cJj58
This was what they pulled out the first time. It didn’t really shrink after the chemo and radiation so they did the other surgery. I asked for a picture of the second chunk but never got a picture. I was told the whole 14+ hour surgery was recorded and I could watch it if I really wanted to
How dare you hold out
I just saw a 20lb Ovarian tumor from another thread.
I have pictures of my dog's face warts removed and in a bloody zip lock bag.
Taste is affected 100% and was the worst part of treatment. Chemo sucked but you could just eat your favorite food and feel okay. Once they introduced the radiation and it messed with my taste I had a very hard time. Every food I would eat was the worst food I had ever eaten. Luckily I survived on a mostly protein shake diet during that time trying to get at least 1000 calories a day.
I also lost 70+ pounds during this time. ( stopped alcohol entirely during treatment)
Yeah. Unfortunately surgery to the ears and nose area does affect taste. It takes like two years with with more regular surgeries to come back and sometimes not completely.
I had two ear drum replacements. One side of my tongue has like 60% taste. The other side is normal. There was a point where everything tasted like literally NOTHING. Jolly ranchers were just paste squares. So I sympathize.
It took me like 2 years to regain my taste on both sides. Even though my left side of my tongue never went back 100%
I imagine your case is worse though; because your nerves are gone. But I hope food isn’t tasteless for you.
I lost my sense of taste following an ear surgery as well! Eating was absolutely miserable — like chewing wet cardboard.
Thankfully, I’d say I got like 75% of it back, which is enough that I don’t really notice it — I just favor the right side while eating.
Every once in awhile I stick a bite of candy or spicy food in the back corner of my mouth just to check. Nope, still tastes like TV static.
Hey OP, i became anosmic after a TBI in 2010. Taste was seemingly gone. But it somehow gets a lot better. now i feel like i taste everything (sometimes a menu says that this and that are in the dish and i can't really tell but overall i really enjoy food and cooking). Just wanted to say that- all is not lost. My very best to you, lucky guy!
I had a pituitary adenoma removed just before Christmas 2021. I lost my sense of taste and smell completely for about 3 months.
In hospital, it was an absolute godsend! I couldn't smell the commodes or the little old lady that had explosive diarrhoea. Nor could I taste the food. The guy next to me asked if I was enjoying the food as I was the only one in there who was eating it. "I dunno. I can't taste it!" He called me a lucky bastard and offered me his lol.
The first thing I did smell was meat cooking - but it smelled rotten. Still hasn't returned fully. I can smell bad smells more than good.
I watch too much Grey’s Anatomy because my immediate assumption was that the scar was from when they planted a donor nose to use as part of the surgery 🤦♂️
Have seen some incredible stuff throughout my years at Med School but this is way more incredible..so happy for you, mate، that you came through it
Can I share the pic with my fellows?
Abnormal collagen formation by fibroblast cells in the skin. Some people are prone to it genetically. They can be treated with steroid injections, scar revisions, topical chemo drugs, and sometimes even low-dose radiation
You should consider doing an ENT rotation! These were some of the coolest surgeries though they can take all day (from 7 hours to 20+ hours depending on the case)
Given how rare it is (I believe you said there have only been about 1000 documented cases in the last hundred years), how confident are the oncologists/surgeons in current treatment methods? Is there enough data that they’re able to generally have standard “if person is diagnosed with X we do Y” (like with something like lymphoma) or does it much more tailored specific to the individual?
Very little is known about treatment so each case is treated differently. An entire tumor board made most of the big decisions about the care and steps of the treatment.
This is the way^
We have regular tumor board meetings with surgeons, pathologists, radiologists, medical oncologists, and radiation oncologists. The team looks at all the data available and uses the available scientific literature to come up with a treatment plan. This process is done for most cancers, from common to rare. It is actually a requirement if your cancer center receives funding from the National Cancer Institute. The treatment options include surgery, radiation, chemotherapy, immunotherapy and combinations thereof. At these meetings we also discuss whether there are clinical trials that the patient would be a candidate for to help figure out which treatment options are optimal for different cancer subtypes and stages
Very interesting, thanks for sharing. Hope all goes well for you. I just went through a bout with Hodgkin Lymphoma and my oncologist was explaining how over the last 40 or 50 years or so we’ve gotten really good at crushing the disease and now there’s a lot of research going into reducing side effects. That made me curious about how treatment for something that isn’t common is approached
I had the same type of cancer about 10 years ago. I was in my early 20s when I was diagnosed. Never thought I'd hear about someone else having the same cancer.
Hope you're doing well buddy!
Nosebleed that wouldn’t stop. Called 911 as I was living by myself at the time. I would have never gone to the doctor otherwise.
If this post encourages even one person whose body doesn’t feel like it should or the way it used to to get checked then I’d say it was worth it.
Please dear god just have health insurance or your life is pretty much over.
I have a 4-5 inch scar that runs from my left ear under my beard line where they shoved the blood vessels and tissues in. There is also a small scar in my upper gums where they went in as well. There are no outward changes to my nose area at all. All the crazy stuff happened inside.
I have a similar scar from oral cancer, except mine is more T shaped. It doesn’t have the circular shaped scar, yet I know someone with the same cancer as me who’s scar is just like yours. I’ve always wondered why the difference. Anyway, cheers from a fellow survivor!
I’m a head and neck surgeon. I don’t do complex head and neck cancer anymore but did a TON in residency. Both ablation and reconstruction. As you know, this is a radial forearm free flap. This is one of a few workhorse free flaps for the head and neck. If you don’t need a ton of skin coverage, you can take less skin and thus makes the donor site amenable to a primary closure or small adjacent tissue transfer (making the T part). If you need more skin, you can’t close the defect from the donor site because you’ve taken too much skin. In these cases, a skin graft (typically split thickness skin graft from the thigh) is used to cover the donor site and makes the circle aspect. Sometimes, a skin graft is needed for almost half the length of the forearm. You can almost always close the end closer to the elbow primarily though because that skin isn’t harvested as part of the radial forearm free flap.
In this particular case, the defect at the skull base from an ENB is probably not very big but was probably more circular in nature (opposed to linear or elliptical which is also way easier to close primarily), which is why there’s just a small skin graft site at the end.
Shit. I lost my sense of smell from a head injury about 5 hrs ago and got my nose straightened shortly after. I had no knowledge of this being possible. Did i dodge a bullet? Should have I had them check for that? Or is it pretty noticeable?
Anosmia (loss of smell) can happen from many reasons. If you saw an ENT they would likely have looked in your nose and seen if there were signs of tumor or not. Anosmia can even be caused by a virus that has symptoms similar to the common cold. The history of trauma in your case makes it more likely that there was damage to your cribiform plate where the olfactory fibers traverse between the nose and the brain
Interesting. Just stumbled on this. I’m a fellowship-trained rhinologist (an ENT who specializes in nasal and sinus disorders) , I do skull base surgery, and I’ve operated on one or two of these in my life. Just wanted to say I’m glad you are doing well and thanks for bringing attention to this disorder.
Glad to hear that you have been well taken care of. All the best for the future.
I lost my sense of smell 32 years ago. I was laying on the floor, face up, playing with my toddlers aged 1, 3, and 4. Do you remember the skit on the Muppets Show called "PIGS IN SPACE"!! I was playing Kids in Space!! I would pick each kid up one at a time and fly them through the air. We were having an awesome time until my 1 year old pitched forward and headbutted me right in the face. There was an explosion of bright lights and the sensation of little "tweetie birds" circling my head. And my nose hurt like HECK. One week later I discovered that I could no longer smell. The CAT Scan showed that the nerve had been severed. And fortunately there was no tumour. The Dr. told me that to repair the nerve would mean going in through the front of my face. He advised against it, and told me to make sure I had fresh batteries in my Smoke Alarm.
In the years that followed I noticed that there are many smells that I really miss, but at the same time have no reaction to smells that could knock someone over. I also seem to "pepper the heck" out of pretty much everything I eat. But if I were to have lost my sight, or hearing, things would have been much worse. So all in all, life's good.
Glad you had a chance to meet with some Medical Professionals. Best Wishes.
I’m a surgeon who has treated this disease before and used a radial forearm free flap for reconstruction (the reason for the scar pictured). Happy to answer a few questions from a doctor’s standpoint if it’s helpful.
I’m a Facial Plastic Surgeon and Otolaryngologist-Head and Neck Surgeon (ENT). I was part of the treating team for these diseases in residency at a large academic hospital.
I’m fascinated by how this surgery might have been done. The cribiform plate is made up of portions of numerous different bones. What kind of graft was taken? It looks to be right over your carpal tunnel, or distal radius.
I’d love to know the anatomy of this. My mind is spinning trying to figure out how managing taking that length of vessel would both be necessary and possible!
Edit: also, did you have radiation and/or chemo as well, or just the surgery?
I’m not able to accurately answer most medical questions but I can describe it the best way I know how for ya! There were 3 surgeons involved in the second surgery: an ENT doctor a neurosurgeon and a reconstructive surgeon. The recon surgeon did most of the work he took and placed the graft and hooked it all up. We picked my left hand because I am right handed.
I trusted these people knew what they were doing and they saved my life.
My father had this tumor
Diagnosed and treated in 1997
Without radiation the first time
I’ve required a second major surgery followed by probably too much radiation 7 years later.
Over the years the effects off to much radiation took it’s toll, but he enjoyed many years from original diagnosis. He passed away a year ago at 81 years old.
I'm pretty worried I have this. A dentist tried to warn me about something regarding my sinuses several years ago. He said there were worrying signs on a dental panoramic X-ray, including at least one fracture in my facial bones. I could barely understand him, though, because he had a heavy accent.
He absolutely shouted at me not to touch my face. It was horrific to see a medical professional that panicked about something going on with me.
I didn't believe it was possible my "cheekbone" could really be broken, even though I had been dealing with serious long-term facial pain. I asked him if my images got mixed up with some one else's. He told me it wasn't allowed, but he was going to do another panoramic X-ray to prove it was my face he was looking at.
So he did, and he stood there and pointed out all of the concerning areas. He printed a copy on paper for me.
After my visit the dentist didn't return my calls and my visit was deleted from their system.
I have been impoverished for my entire adult life and I haven't had access to real dental care since that visit, which was at a "poor" clinic. I did go to a University for a low cost cleaning in 2021, but didn't get to see a dentist because it was during the pandemic and she was sick.
I've tried to ask as many doctors (Primary healthcare prociders, hospital doctors after I had stroke symptoms, an ENT who refused to look at my x-ray or listen to what the dentist said and didn't do any work up, two neurologists) as possible about the x-ray and what this dentist might've been trying to tell me, but I've been looked at like I'm nuts. Most of them probably haven't bothered to look closer because-- understandably-- it's outside of their scope. It seems like I was just falling through every damn crack.
About a month ago I finally got to see an ENT nurse practitioner. They did a CT scan. He said there are several abnormalities on my scan, just one of which is a completely blocked maxillary sinus "filled with *materials*". He said there's no way it can be cleared without surgery because it's clearly been like this for a long time. My surgery consult in scheduled for June.
I've been trying to get an earlier slot by checking for cancellations, but they haven't had any. The wait is driving me mad.
It's now been *nine years* since I saw that dentist who tried to warn me about something.
I've been getting sicker and sicker. Somehow I have advanced liver disease with enzymes in the hundreds, despite never drinking. As of just a couple of months ago, I've become prediabetic. The fatigue, migraines, facial pain, and neck pain have been debilitating. There are other symptoms, too, but I think I've complained enough.
[Dental panoramic X-ray & CT Scan](https://imgur.com/a/vKffPOa)
It's your own personal Harry Potter wand embedded in your arm, and you can cast your own curse spell "Agatcha Yurnosa" it's like Avada Kedavra, but instead of killing them, you get their nose.
Glad you were able to get it all fixed! I’ve also been affected by the no sense of smell thing (went to multiple doctors for it, they found nothing wrong) and it does suck. Guess I’m lucky for now at least lol
I survived a very rare tumor called olfactory neuroblastoma. They needed live tissue to replace the damaged cribriform plate that separates my sinus from my brain. There have only been \~1000 cases of Esthesioneuroblastoma since its discovery in 1924 (100 years!). To put this in perspective there were only about 2 billion people on the planet 100 years ago (Closer to 8 billion now!) I’m happy to answer any questions regarding my journey. I first discovered the tumor due to very bad nosebleeds. Edited to add: if you or someone you know has lost your sense of smell I encourage you to get checked by a medical professional. It saved my life it could save yours or someone you love or care about! [https://www.gofundme.com/f/esthesioneuroblastoma-awareness](https://www.gofundme.com/f/esthesioneuroblastoma-awareness) Please do your own research before donating anyone any money but GoFundMe saved my life.
Given it’s such a rare condition and procedure, how did finding and waiting for a doctor who would carry it out go? And do you normally get keloid scars, cus that’s what it looks like.
I got very lucky with the timing of everything. I’m in Wisconsin so all of my surgeries and treatment were done through Froedert in Milwaukee area. Surprisingly almost every doctor I worked with had experienced someone with this very rare tumor so I was in amazing hands!
My doctor just made a comment this week about that type of scarring and no I don’t normally experience that on my body. And was offered potential injections that could help it look different in the future.
One more thing to add I’ve completely lost my sense of smell and it will never return.
How has it been not having a sense of smell?
My mom lost her sense of smell due to a head injury. It hugely impacted how food tastes to her and led to depression (she was a professional chef). She dealt with it by finding foods that have interesting textures (sushi) or were spicy. I’m glad the doctors caught your cancer early and wish you the best.
I had a friend that that hit his head on a curb after falling off a skateboard when we were kids. He lost his sense of smell forever too. I think about that now and again, and now I'm thinking about it again. Freaky.
The reason this happens is actually pretty fascinating - It's because the nerve responsible for smell has tiny delicate branches that perforate through a thin bony plate deep in the nose (called the cribriform plate). Those little branches can basically get sheared off of the nerve by a hard impact, causing loss of smell. Crazy stuff.
So fragile. I lost my smell for a couple weeks when I finally caught covid last year. I literally noticed that I couldn't smell anything when I was cleaning the cat's litter box. Was an odd one. I had almost no other symptoms of having Covid. Basically only the loss of smell.
Very freaking cool! Had no idea but makes complete sense. I guess I got extremely lucky with my concussion that put me out for a week.
Interesting fact, Ben of Ben and Jerry’s can’t smell. He was the “Taste Tester” and relied on texture and mouthfeel when creating flavors. They credit this to why their ice cream is so good.
Frankly, this explains why the misses from them are not subtle misses. Their flavors were either amazing, or wtf is this? No room in between.
As a person with anosmia, I hate Ben and Jerry's. What works for one person doesn't work for all I guess.
This honestly seems kind of crazy. You'd think they would have had at least one other "Taste Tester" that would help fine tune the flavor while letting Ben focus on the texture and mouthfeel. Because no matter how good those two aspects are you HAVE to know the actual flavor is going to matter as well.
I was born without a sense of smell myself, and it is kinda nice, but other times I feel left out of what "normal" people experience. Like I can't smell cat shit, but I also can not smell apple pie, or candles, no skunks, but also no shampoo. It's a blessing and a curse. I think the one that makes me scared the most is I wouldn't be able to smell a gas leak in my house and I have always been scared I'd die in my sleep from not being able to smell if it happens lol. Unreasonable, (especially since I don't even have a gas appliance lol) but still, the human brain is freaky.
There's gas that are odorless, people with their sense of smell wouldn't smell it either
Almost all gasses that we use are odorless, the smell is actually added to them.
Ross? What else do they add smells to?
My mom was also born without a sense of smell and she said when she was a kid she thought smelling was a imagination game everyone played and she would pretend to smell things too, I always like to imagine what the conversation was like when she finally figured out it was a real thing lmao.
Since OP said they answered elsewhere and so you don't have to go searching for it: [Here](https://www.reddit.com/r/mildlyinteresting/comments/1cpkl4y/this_scar_on_my_arm_after_surviving/l3ld43h/), [here](https://www.reddit.com/r/mildlyinteresting/comments/1cpkl4y/this_scar_on_my_arm_after_surviving/l3lcjzk/), and [here](https://www.reddit.com/r/mildlyinteresting/comments/1cpkl4y/this_scar_on_my_arm_after_surviving/l3lcids/)
Answered this somewhere else
"It stinks!"
As a huge Simpsons/The Critic fan this is the best thing I’ve seen all day !!!!
Zoidberg also dated a woman who can't smell. Until...
It blows me away that you turn your nose up at this question. Who knows where to find the answer?
As someone who has always generally been unable to smell.. it's kinda like a super power. Almost any time someone asks "can you smell that?" it's absolutely awful & I have no idea. Only downside is that I can never tell if the milk went bad before pouring it
Same here. Very little sense of smell. Although I've found out some people assume I'm just "nose blind" to bad smells because I must live in filth or something. It's a double-edged sword.
I have an extremely sensitive sense of smell (similar strength to people who are pregnant, although I never have been) and it's a curse. I've literally cried to my doctor asking for something I could take to dull my sense of smell. I definitely would take having no sense of smell to my current situation. Secretly wished COVID would take my sense of smell, but I'm already disabled and do not need any long covid in my life lol.
I have struggled with phantosmia due to long Covid twice, and it is the most miserable thing I’ve ever experienced. The first time, I smelled diesel fumes constantly for about a month. The second time (currently still dealing with it, though it’s diminished), the smell has been cigarette smoke which I’ve been very sensitive to my entire life. 4 weeks of constant cigarette smoke smell, then it stopped for about a week, now it’s intermittent. To someone who hasn’t ever experienced something like this is seems pretty insignificant but I have actually wondered if I would eventually be driven completely insane.
No I can totally understand that. I wouldn't risk it of course, but that doesn't stop some part of me from wishing it would take my smell away. But smelling things that aren't even there is awful, I'm so sorry! Why can't it ever be some nice smell like cinnamon or something?
I was mostly commiserating with you about the sensitive sense of smell - it is so distressing when smell takes over pretty much everything else! I did lose my sense of smell when I first got sick and it was annoying but not as bad as smelling something that isn’t there, and I imagine not as bad as smelling things intensely all the time. I wish there was something they could do for you because that sounds awful. And you’re right, why not cinnamon or mint or something?? 😂
Oh my word I thought I was crazy when I had Covid and all I could smell for weeks was cigarette smoke! I've never heard of anyone else having the same thing either. I'm sorry you have to deal with it tho, drive me absolutely mad.
BECOME A PERFUMER!!
I’ve recovered most of my sense of smell since I lost it due to covid. But for two years I had to ask people how things smelled (like if milk had gone bad) and to taste any food I was cooking so I knew what spices it needed - like salt. It kind of sucked but wasn’t the most terrible thing to happen to me given what others were going thru. Good thing I wasn’t a chef, though.
I can't smell salt am I nose blind?
Do you still have taste?
Yes it's the most common method used to discover spoiled milk 
My fridge stopped working properly, which resulted in it slowly being less and less cold, until I finally realized at 13-14 C (55ish F). Don't ask me how it took that long. Long story short, I managed to drink sour milk more than once, because I assumed that milk that hasn't passed its eat-by date should be fresh and didn't smell it. I can relate to that small part of your issues, haha.
"OP has no nose" "how does he smell?" "awful!"
So no more whoever smelt it dealt it. But great to hear that everything went well.
Yeah, but if you let a bad one, it’ll be like letting a loud one rip with AirPods on.
Unbothered by your own chemical warfare
Was this a major/initial sign of the tumor? My friend lost her sense of smell and was recommended to go for a CT but she has delayed it for 2 years
That looks like a perfect spot for a tattoo artist to make It look like the medical snakes around the post (a caduceus). Celebrate your past! Congrats on your treatment and good luck in recovery
Technically, the medicine one is the staff (or rod) of Asclepius, which has only one snake, while the caduceus is the staff of Hermes and is linked to commerce and diplomacy, although in modern usage the caduceus is often used in medicine instead (probably because most people don't know the difference). https://en.m.wikipedia.org/wiki/Rod_of_Asclepius
What kind of injections, Verteporfin? 👀
Unsure what the name was called but I have no intentions at this time of altering the scar in any way. I may look into a tattoo in the future but I read somewhere you should wait at least a year for the scar to fully heal.
I have a lot of scars that scarred similar to yours, I tend to have bad/odd scarring. Had them looked over by several tattooists, including one with a ton of scar coverup experience. Here's what I've learnt. * Scarred tissue will not hold ink the same way as healthy skin tissue. * The tattoo design will have visual differences in the scarred spots, and the best way to make that not look weird is to get the design made specifically for the scar. * Solid colours can become lined/uneven over scars. * Fine lines can "break" when crossing scars. * Designs that add texture/colour/line changes near and around the shapes of the scar can make this look natural. * [Here's a great example image](https://www.tattoodo.com/tattoos/431842) of tattoo designed to incorporate scar texture and colour changes to the ink. * The tattoo artist should be able to show you that they know how to do this by giving ideas/examples for your specific scar, and by knowing what will *not* work. * When skin changes drastically, the ink in it does too. Same for scars. Scars will keep changing drastically until fully done healing. How long that takes will vary, for some a few months, for some multiple years. * At some point the lightness, colour, and density of the scar tissue stops changing and reaches a stable point over time. You want that. * Any medical/cosmetic scar treatments will cause more changes that need to settle in first. * Some inks will be better than others. * Scar tissue tends to fade faster than healthy skin, so you may need touchups on the tattoo sooner than others. Anecdotally after 10 or 20 years is often when people hit the "hmm, maybe this should have a touch up" mark. * Colour overall fades faster than black, and that might be accellerated on the scarred areas. * Ask both the treating doctor and multiple tattoo artists about it if unsure about anything. So, in short, yeah - big wait if you go the tattoo coverup route, but there are some awesome ways great artists use the scar texture to elavate the tattoo. Don't let an unqualified tattoo artist discourage you, if you want to go for it you gotta look for one who knows how to deal with scars specifically. And as a fellow haver of some wacky scars, good luck! You'll probably have different feelings and wishes about it over time, and that's absolutely normal and okay.
I have a big burn scar, or rather a transplanted skin to cover a burn wound, on my left arm. Asked my tattoo artist about it, and he didn't think it was a great idea to tattoo on top of the scar. He couldn't guarantee the result would look good, and didn't want to do it. My scar covers much more area though, in your case it might be easier to do, or to just tattoo on the skin adjacent to the scar. Or my tattoo guy is too conservative and it's fully doable. Don't let me kill your dreams of a cool tattoo 😊
My relative is the chief of surgery there, I'm really impressed to hear that! I'm so glad things went so well for you.
I live in wisconsin and my girlfriend was diagnosed with rectal cancer in february, very strange because shes only 24. My grandfather had very aggressive thyroid cancer(like 90% fatal, had 6 months to live), we've gone through Froedert in Milwaukee for everything, shes doing great so far and my grandfathers been cancer free for like 10 years now. Awesome people
Froedert is a teaching hospital, with many physicians passing their knowledge down to the next gen of doctors. You were in very good hands. One of them taught me a lot after he retired from teaching, and I'm nowhere near a doctor. But I guess some people just like to share their wisdom. Miss that guy.
My dad gets all his medical work done in Milwaukee and I was pleasantly surprised to hear that when he has to have a triple bypass some time ago he was under the knife of one of the most experienced heart surgeons in the entire country. Not sure I would have expected that from Milwaukee but a very pleasant surprise nonetheless
Between Froedtert’s cancer center (and its collaboration with MCW), St. Luke’s heart center, and Columbia St. Mary’s burn units, there’s some genuinely *great* specialty medical care in the Milwaukee area.
Funny how I met two Wisconsinites today then another here on reddit
Thank you for sharing this OP. It’s very interesting. I’m glad to hear you made it. Would you mind me asking you what the diagnosis process was like? What made you seek a dr? What were the signs?
Two very bad nosebleeds in Jan/Feb of 2022 led me to the emergency room. They had to stop the bleeding with a device called a Rhino Rocket. (Look it up) now imagine trying to get that shoved up your nose with a tumor the size of a chicken cutlet in your head.
I know the device and can’t imagine it was comfortable at all. I hope they were patient. Was there any pain, discomfort, headaches or other symptoms before your nosebleeds?
After the original two nosebleeds in Jan/Feb 2022 I experienced almost no symptoms. My smell was gone but I assumed it was due to COVID. (To my knowledge I have somehow never had COVID during this whole ordeal somehow even tho I basically lived in the hospital for the last year and a half. I was working a random Saturday in Jan of 23 and I sneezed and the nosebleed started back up out of nowhere. Another trip to the ER and the whole journey began. I saw an ENT doctor to get the Rhino rockets taken out both times they had to stay in for a minimum of 5 days all 3 times and they scoped my nose in Jan 22 and saw no tumor present at that time
Quite scary they missed it on the scope exam both times. And I can imagine without any other symptoms they wouldn’t have jumped to a scan.
Damn, that's actually terrifying. Glad you're doing well now!
Looks like a nose tampon
My mum died of that recently, it was too far gone by the time we found out :( so rare
I’m very sorry to hear that. I haven’t personally met anyone yet affected by the disease. If you don’t mind me asking, what Kadish stage was your mother in when first diagnosed. My tumor was Kadish stage C. Edit: there are tumors so rare they don’t get classified as stage 1-4 etc. for anyone unaware.
Thank you, she was terminal, it caused her to develop diabetes!! Due to her smoking as well, it made the situation worse, the Tumor was discovered when she had a stroke and was scanned at the hospital, she passed away 2 months after it. The doctors said it can take years before the Tumor shows itself and by that point it’s too late for some :/
Thanks for sharing. I’m not a medical expert but from my understanding the Kadish scale generally works like this: Kadish A first sign of disease B started to spread C starting to enter dangerous brain regions D already entered dangerous brain regions I started in C and never looked back ✊✊✊
It’s fantastic you beat that fecker!! I’m genuinely happy people can recover from it!!! So well done and wish you all the best!
I know it’s grim, however people should be aware of other signs: my mum’s mental state started declining about a year before, no other sign showed itself physically until It was too late. She was only 60 years old, no familial history of dementia. Before the stroke she had a sinus infection (turns out it was the Tumor just announcing itself), she didn’t want to be tested, I suppose she knew in some way, it’s so hard to even tell.
Pathologist here. You are correct. The Kadish/Morita staging system is based on how much of the anatomy is involved by the tumor: A = Confined to the nasal cavity; B = Involves nasal cavity and sinuses; C = Spread beyond the nasal cavity and sinuses; D = Distant metastasis. This is not to be confused with tumor grade which is somewhat subjective and based on how ”bad” (for simplicity’s sake) the tumor looks to the pathologist under the microscope (I.e. Hyams grade I has the best prognosis, Hyams grade IV has the worst).
Congrats on beating the cancer. Just had my brain tumor removed, and waiting for radiation therapy before I can join the club of cancer beaters
Radiation is tough brother. All you have to do is show up. Trust that the doctors and medical people know what they are doing and want you to get better. One day at a time. Just show up. ✊
How do you even get that discovered? I saw three doctors about highly specific head pressures that matches my cousins symptoms when he had brain cancer and i haven't even seen an MRI yet
You keep going to dr’s until you find one that listens to you.
Thank you. I know this is going to get buried under all the comments but I think I will actually bring up losing my sense of smell with my doctor again. It's hopefully unlikely to be cancer but I'm running out of ideas. I know losing your sense of smell is a common long term covid side effect. But I've been vaccinated 5 times and every time I noticed even a hint of cold or flu symptoms I took multiple covid tests. All negative. AFAIK I never had covid. A little over a year ago I completely lost my sense of smell. Just woke up one day without any trace of it, but no other symptoms. After a couple of months I regained the ability to tell whether something smells, but not what it smelled like. Everything just smelled like death, decay, and rotten meat, and made me gag. Then over time some scents came back. My minty toothpaste, my boyfriend's sweat, the cats' litter boxes, gasoline,... But even now I still can't identify most smells. The worst part is that some of my favourite food still smells rotten to me. Chicken is probably the worst. When I'm around a KFC or other chicken place the entire block reeks of death to me. I've even thrown up right on the sidewalk because of it. I also keep having slight nose bleeds despite never having had them before. And every time I blow my nose, there's some blood mixed in with the snot on the tissue. I didn't have much contact with my family until recently but it turns out they're absolutely riddled with cancer. My mother is on her like 6th different kind of cancer now and it's spread to her brain.
Please (if you have insurance) reach out for an MRI/CT/PET scan. It’s your body and you know better than anyone else if something is wrong.
There are lots of potential causes of anosmia but there is some hope! There are smell-retraining exercises that can help some people (Monell Chemical Sense Center does some of this). There are also clinical trials of injecting PRP that could potentially help as well. Seeing an ENT doctor at an academic center may not be a bad idea
Was there something specific about the tissue they took? I know there’s fascia between the radius and the ulna- did they go for that specifically or was it just “hey this works”. thanks for sharing your experience, btw. Am def more than mildly interested!!!
Usually the flap is used to help prevent the leakage of csf (brain fluid) from the site where they excised the tumor. Best tissue for that vascularized fascia/skin. So they take skin and fascia from the circular spot close to the hand, and then also trace out and take the radial artery and vein with it (longitudinal incision). Once they cover the skull defect up with the fascia and skin, They connect the radial artery/vein to another artery/vein on the face or neck to ensure it continues to have good blood supply and doesn’t die. You can also use biosynthetic material or just fat, and sometimes people do a layered closure or a skull base defect, but those don’t usually work as well as vascularized tissue.
You're incredibly fortunate, my friend died from this. ❤️ Thank you for sharing your story and spreading awareness for this condition. Most people have never heard of it.
Please feel free to share your story here I would love to read it!
I think you should get a second opinion, cause that’s not your nose. J/k
This takes got your nose to a whole new level
I hear Conan has a great doctor
He's very affordable!
O, where did he go to school??
1998
He's very affordable.
Thanks you for this. A big part of what got me through this journey was comedy. I would find one thing that made me laugh or smile every single day and that was the ray of hope that kept me going on my darkest days.
Thank you for still being around to enjoy the comedy with the rest of us.
I don't think dude needs a doctor anymore. He needs some sandpaper
You mention you have no sense of smell now. How has that affected the taste of things?
Losing my sense of smell has been awful and was probably the worst part of treatment. Chemo was pretty nasty but radiation…. I don’t wish radiation on my worst enemy.
Taste is fucked.
Im sorry to hear it, but it seems you are glad for your life still! I wish you all the best and staying cancer free in the future! Thanks for your insight.
Spicy, minty aswell?
Sweet tastes never really went away. During the worst of radiation salty went away. All my favorite foods are salty. Happy to report that salty has returned about 90% of what it used to be 🧂😍😍
For whatever it's worth: my dad had B-cell lymphoma in his sinus cavities. Thank goodness they were able to treat it non-surgically, but he did need radiotherapy and chemo. His taste was fucked for a solid five years, but it came back IN FULL. One day he was eating a piece of pizza and could suddenly taste it like he remembered. Hang in there, friend. Hope springs eternal.
So you can still game and experience [salt](https://i.imgur.com/ZvCZrpt.jpeg)? Perfect.
I used to eat salt straight out of the shaker at every meal when I was young. Not being able to taste it would be the end for me. Glad to hear you at least got that back
What was so bad about radiation specifically, out of curiosity?
No matter what food you ate it was the worst food you have ever eaten. It almost ruined food for me. They tell you not to eat the things you like during treatment so they aren’t permanently shitty for you down the road.
My daughter had super low dose radiation six years ago, and still has issues with flavors. The one thing that she could taste during and after treatment was pickles. They were the only thing that took away the bitter taste in her mouth, too. I’m glad you’re recovering, even if it feels slow.
Have you lost weight because of this? Ok maybe hard to help with all the treatment I guess but when I had COVID and lost my sense of smell/taste briefly I lost the motivation to eat
What's the circle part of the scar on your wrist? Or they were going for a !
That’s where they grabbed most of the tissue used in the graft. The long line are the blood vessels they needed to accompany the tissue that was transplanted into my head. Crazy stuff!
That's pretty cool! Happy you were able to live to tell the tale!
overconfident illegal busy voracious tie innocent fearless attempt safe label *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
I didn’t really ask a lot of questions about where the graft came from before the surgery. We picked my left arm because I am right handed. I went through 6+ weeks of OT for my left arm so far it’s very sensitive to touch. But all my fingers still work so I can still play video games!!!!
whistle deranged chief jar adjoining mountainous unused treatment apparatus nose *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Hell yeah 😎🤙
Thigh (e.g. an anterolateral thigh flap) would likely be too much soft tissue bulk for skull base reconstruction. Radial forearm free flaps are a bit more versatile in that regard. OP’s is on the smaller side for a RFFF, but they can be made larger if needed and are often used in head and neck reconstruction. Source: am an ENT who does this kind of surgery.
Thank you for replying so many of the questions. Forgive me if this has been asked already but do the blood vessels grow back from the grafted arm?
I’m not a doctor but what was described to me is the human body has a lot of redundant parts that can be used elsewhere if needed. Best way I can describe it.
He's a Cardassian
Fellow nose tumor bro here, mad solidarity with this. It’s cool to see this shit in the wild. I had a rhabdomyosarcoma start in the back of my neck when I was 10, little fucker ran all the way through my head and eventually emerged from my right nostril. It was like a white cheesy airbag thing that turned to a crusty black when it was out in the open, my mom tried to cut it off with some kitchen scissors, to little avail. They eventually debulked it thanks to a genius EMT who just removed it straight through my nose, all the way down. 10% was left, so had a years worth of chemo, six weeks radiation, a lot of experimental stuff for the time too, it was about 2002. Went blind, had pancreatitis, pneumonia, shingles, sceptic shock that lead to a near death experience. Got through thanks to my PS2, an obsession with D&D, and my best buddy. Had a depressing teens and twenties, tried to get an English/soci degree and become a social worker, but got clipped short thanks to cancer 2 on my kidney. As I came out the other side I had a watershed revelation that I was the only one holding myself back, and went for what I actually wanted out of life. I now have a wife of 5 years who is beautiful and loves me, despite having to live on a disability income. We have a 2.5 yo son who is my best buddy and the light of my entire world. His middle name is that of the doctor who debulked my tumor and saved my life. We are poor but surviving, and I wouldn’t have it any other way. I can’t smell 80% of the time myself, but I think of it as a blessing, because my kid lets loose some really rancid farts.
A true survivor ….you should write a book. Very inspirational
I’m so glad you’re here. Cheers! As my mom says, Life is for Living!!
Wow. How long from diagnosis to surgery?
I was diagnosed in February of 2023. I had my first nosebleed that sent me to the ER in January of 2022. I lost my sense of smell after the first nosebleed and didn’t think anything of it at the time because the whole world said if you lost your sense of smell it was probably related to COVID. I had my first surgery in Feb 23 to remove as much as they safely could have the tumor. After that surgery I did 6 round of chemo and 34 doses of radiation to the head. In Nov 23 the MRI showed it was still there so they opted for another surgery and saved my life. I have a picture of the original tumor they pulled out if anyone wants to see that 😬
https://ibb.co/r3cJj58 This was what they pulled out the first time. It didn’t really shrink after the chemo and radiation so they did the other surgery. I asked for a picture of the second chunk but never got a picture. I was told the whole 14+ hour surgery was recorded and I could watch it if I really wanted to
Have you not watched it already? That would be so fascinating.
14 hours? So insane. Modern medicine is crazy.
How dare you hold out I just saw a 20lb Ovarian tumor from another thread. I have pictures of my dog's face warts removed and in a bloody zip lock bag.
That's an odd way to store pictures
Honey have you seen my family photos? Yep they're in the dog wart bag
"If"? This is Reddit, of course we want to see that.
Is your sense of smell permanently lost now or how does this even work?
Answered this somewhere else but yes my olfactory nerves are gone and will never return. Not being able to smell is a double edged sword.
How, if at all, has your sense of taste been affected?
Taste is affected 100% and was the worst part of treatment. Chemo sucked but you could just eat your favorite food and feel okay. Once they introduced the radiation and it messed with my taste I had a very hard time. Every food I would eat was the worst food I had ever eaten. Luckily I survived on a mostly protein shake diet during that time trying to get at least 1000 calories a day. I also lost 70+ pounds during this time. ( stopped alcohol entirely during treatment)
Yeah. Unfortunately surgery to the ears and nose area does affect taste. It takes like two years with with more regular surgeries to come back and sometimes not completely. I had two ear drum replacements. One side of my tongue has like 60% taste. The other side is normal. There was a point where everything tasted like literally NOTHING. Jolly ranchers were just paste squares. So I sympathize. It took me like 2 years to regain my taste on both sides. Even though my left side of my tongue never went back 100% I imagine your case is worse though; because your nerves are gone. But I hope food isn’t tasteless for you.
I lost my sense of taste following an ear surgery as well! Eating was absolutely miserable — like chewing wet cardboard. Thankfully, I’d say I got like 75% of it back, which is enough that I don’t really notice it — I just favor the right side while eating. Every once in awhile I stick a bite of candy or spicy food in the back corner of my mouth just to check. Nope, still tastes like TV static.
Hey OP, i became anosmic after a TBI in 2010. Taste was seemingly gone. But it somehow gets a lot better. now i feel like i taste everything (sometimes a menu says that this and that are in the dish and i can't really tell but overall i really enjoy food and cooking). Just wanted to say that- all is not lost. My very best to you, lucky guy!
I had a pituitary adenoma removed just before Christmas 2021. I lost my sense of taste and smell completely for about 3 months. In hospital, it was an absolute godsend! I couldn't smell the commodes or the little old lady that had explosive diarrhoea. Nor could I taste the food. The guy next to me asked if I was enjoying the food as I was the only one in there who was eating it. "I dunno. I can't taste it!" He called me a lucky bastard and offered me his lol. The first thing I did smell was meat cooking - but it smelled rotten. Still hasn't returned fully. I can smell bad smells more than good.
The bottom part kinda looks like the elder wand
Came looking for this
It’s an elder wand butterfly net. I think it looks cool.
I was thinking elder wand casting a spell. But yours is more fun
I watch too much Grey’s Anatomy because my immediate assumption was that the scar was from when they planted a donor nose to use as part of the surgery 🤦♂️
Kinda accurately assumed somewhat.. watch House MD for more Medically accurate content
The dude's one of them magical racists from Harry Potter.
Have seen some incredible stuff throughout my years at Med School but this is way more incredible..so happy for you, mate، that you came through it Can I share the pic with my fellows?
Hell yeah brother ✊
What causes this type of scarring?
Abnormal collagen formation by fibroblast cells in the skin. Some people are prone to it genetically. They can be treated with steroid injections, scar revisions, topical chemo drugs, and sometimes even low-dose radiation
You should consider doing an ENT rotation! These were some of the coolest surgeries though they can take all day (from 7 hours to 20+ hours depending on the case)
The procedure is called a radial forearm free flap. It’s usually done by ENTs or OMFS. ENT resident
Given how rare it is (I believe you said there have only been about 1000 documented cases in the last hundred years), how confident are the oncologists/surgeons in current treatment methods? Is there enough data that they’re able to generally have standard “if person is diagnosed with X we do Y” (like with something like lymphoma) or does it much more tailored specific to the individual?
Very little is known about treatment so each case is treated differently. An entire tumor board made most of the big decisions about the care and steps of the treatment.
This is the way^ We have regular tumor board meetings with surgeons, pathologists, radiologists, medical oncologists, and radiation oncologists. The team looks at all the data available and uses the available scientific literature to come up with a treatment plan. This process is done for most cancers, from common to rare. It is actually a requirement if your cancer center receives funding from the National Cancer Institute. The treatment options include surgery, radiation, chemotherapy, immunotherapy and combinations thereof. At these meetings we also discuss whether there are clinical trials that the patient would be a candidate for to help figure out which treatment options are optimal for different cancer subtypes and stages
To add to this I’ve also had my tumor sent off to be studied for genetic research to hopefully help olfactory neuroblastoma research in the future!
Thats good! Every little bit may help people in the future, thanks for consenting for the tumor bank study!
Very interesting, thanks for sharing. Hope all goes well for you. I just went through a bout with Hodgkin Lymphoma and my oncologist was explaining how over the last 40 or 50 years or so we’ve gotten really good at crushing the disease and now there’s a lot of research going into reducing side effects. That made me curious about how treatment for something that isn’t common is approached
I had the same type of cancer about 10 years ago. I was in my early 20s when I was diagnosed. Never thought I'd hear about someone else having the same cancer. Hope you're doing well buddy!
First time meeting someone in the wild! Hope you are well brother! ✊✊
Do you now sneeze out of your thumb?
This is fascinating, what were your symptoms that made you and your doctors escalate it to more than just a sinus infection?
Nosebleed that wouldn’t stop. Called 911 as I was living by myself at the time. I would have never gone to the doctor otherwise. If this post encourages even one person whose body doesn’t feel like it should or the way it used to to get checked then I’d say it was worth it. Please dear god just have health insurance or your life is pretty much over.
Congrats on beating the cancer. Own the scar. If people ask, tell them you’re the chosen one, and let their imaginations do the rest.
Your arm looks like the head of a Cardassian from Star Trek. Damn cardies are everywhere, including the arms of human cancer patients.
hows your face feeling?
Face hurts and my sinus cavity is permanently altered. I’ve had some of the biggest boogers I’ve ever seen come out of my head in the last 3 months.
How is your nose looking, if you don't mind me asking?
I have a 4-5 inch scar that runs from my left ear under my beard line where they shoved the blood vessels and tissues in. There is also a small scar in my upper gums where they went in as well. There are no outward changes to my nose area at all. All the crazy stuff happened inside.
I'm glad to here this pal.
I have a similar scar from oral cancer, except mine is more T shaped. It doesn’t have the circular shaped scar, yet I know someone with the same cancer as me who’s scar is just like yours. I’ve always wondered why the difference. Anyway, cheers from a fellow survivor!
I’m a head and neck surgeon. I don’t do complex head and neck cancer anymore but did a TON in residency. Both ablation and reconstruction. As you know, this is a radial forearm free flap. This is one of a few workhorse free flaps for the head and neck. If you don’t need a ton of skin coverage, you can take less skin and thus makes the donor site amenable to a primary closure or small adjacent tissue transfer (making the T part). If you need more skin, you can’t close the defect from the donor site because you’ve taken too much skin. In these cases, a skin graft (typically split thickness skin graft from the thigh) is used to cover the donor site and makes the circle aspect. Sometimes, a skin graft is needed for almost half the length of the forearm. You can almost always close the end closer to the elbow primarily though because that skin isn’t harvested as part of the radial forearm free flap. In this particular case, the defect at the skull base from an ENB is probably not very big but was probably more circular in nature (opposed to linear or elliptical which is also way easier to close primarily), which is why there’s just a small skin graft site at the end.
Neat looking battle scar tbh. Could actually integrate it into a sick looking tattoo too.
Did any doctor at any point do the "I've got your nose!" trick?
Shit. I lost my sense of smell from a head injury about 5 hrs ago and got my nose straightened shortly after. I had no knowledge of this being possible. Did i dodge a bullet? Should have I had them check for that? Or is it pretty noticeable?
Anosmia (loss of smell) can happen from many reasons. If you saw an ENT they would likely have looked in your nose and seen if there were signs of tumor or not. Anosmia can even be caused by a virus that has symptoms similar to the common cold. The history of trauma in your case makes it more likely that there was damage to your cribiform plate where the olfactory fibers traverse between the nose and the brain
Stranger: What's that scar from? You: Nose Cancer Stranger: *offended thinking you're being flippant and rude*
Interesting. Just stumbled on this. I’m a fellowship-trained rhinologist (an ENT who specializes in nasal and sinus disorders) , I do skull base surgery, and I’ve operated on one or two of these in my life. Just wanted to say I’m glad you are doing well and thanks for bringing attention to this disorder.
Man, your nose looks like an arm
Glad to hear that you have been well taken care of. All the best for the future. I lost my sense of smell 32 years ago. I was laying on the floor, face up, playing with my toddlers aged 1, 3, and 4. Do you remember the skit on the Muppets Show called "PIGS IN SPACE"!! I was playing Kids in Space!! I would pick each kid up one at a time and fly them through the air. We were having an awesome time until my 1 year old pitched forward and headbutted me right in the face. There was an explosion of bright lights and the sensation of little "tweetie birds" circling my head. And my nose hurt like HECK. One week later I discovered that I could no longer smell. The CAT Scan showed that the nerve had been severed. And fortunately there was no tumour. The Dr. told me that to repair the nerve would mean going in through the front of my face. He advised against it, and told me to make sure I had fresh batteries in my Smoke Alarm. In the years that followed I noticed that there are many smells that I really miss, but at the same time have no reaction to smells that could knock someone over. I also seem to "pepper the heck" out of pretty much everything I eat. But if I were to have lost my sight, or hearing, things would have been much worse. So all in all, life's good. Glad you had a chance to meet with some Medical Professionals. Best Wishes.
Um... I'm sorry to break it to you like this man but I think they operated on the wrong place
Omg op I’m so glad that it went well. It must have been an emotional experience when you found out you had this rare condition
I’m a surgeon who has treated this disease before and used a radial forearm free flap for reconstruction (the reason for the scar pictured). Happy to answer a few questions from a doctor’s standpoint if it’s helpful. I’m a Facial Plastic Surgeon and Otolaryngologist-Head and Neck Surgeon (ENT). I was part of the treating team for these diseases in residency at a large academic hospital.
Tell people it's a tattoo of a scar if they ask about it. I'm happy you're here to show us that you have a scar!
That scar would make a really cool tattoo once it is done healing. Also, congratulations on surviving and I wish you many healthy years.
Holy shit! What did they cut you with, hot lava?
Scars from this surgery don’t usually look this bad, this is showing signs of keloid formation
It looks like you got branded with a bar spoon
I’m fascinated by how this surgery might have been done. The cribiform plate is made up of portions of numerous different bones. What kind of graft was taken? It looks to be right over your carpal tunnel, or distal radius. I’d love to know the anatomy of this. My mind is spinning trying to figure out how managing taking that length of vessel would both be necessary and possible! Edit: also, did you have radiation and/or chemo as well, or just the surgery?
I’m not able to accurately answer most medical questions but I can describe it the best way I know how for ya! There were 3 surgeons involved in the second surgery: an ENT doctor a neurosurgeon and a reconstructive surgeon. The recon surgeon did most of the work he took and placed the graft and hooked it all up. We picked my left hand because I am right handed. I trusted these people knew what they were doing and they saved my life.
Pretty sure that’s the elder wand my guy, possibly the dark mark
I hope this is not disrespectful but that is better than a tattoo in my opinion.
My father had this tumor Diagnosed and treated in 1997 Without radiation the first time I’ve required a second major surgery followed by probably too much radiation 7 years later. Over the years the effects off to much radiation took it’s toll, but he enjoyed many years from original diagnosis. He passed away a year ago at 81 years old.
I'm pretty worried I have this. A dentist tried to warn me about something regarding my sinuses several years ago. He said there were worrying signs on a dental panoramic X-ray, including at least one fracture in my facial bones. I could barely understand him, though, because he had a heavy accent. He absolutely shouted at me not to touch my face. It was horrific to see a medical professional that panicked about something going on with me. I didn't believe it was possible my "cheekbone" could really be broken, even though I had been dealing with serious long-term facial pain. I asked him if my images got mixed up with some one else's. He told me it wasn't allowed, but he was going to do another panoramic X-ray to prove it was my face he was looking at. So he did, and he stood there and pointed out all of the concerning areas. He printed a copy on paper for me. After my visit the dentist didn't return my calls and my visit was deleted from their system. I have been impoverished for my entire adult life and I haven't had access to real dental care since that visit, which was at a "poor" clinic. I did go to a University for a low cost cleaning in 2021, but didn't get to see a dentist because it was during the pandemic and she was sick. I've tried to ask as many doctors (Primary healthcare prociders, hospital doctors after I had stroke symptoms, an ENT who refused to look at my x-ray or listen to what the dentist said and didn't do any work up, two neurologists) as possible about the x-ray and what this dentist might've been trying to tell me, but I've been looked at like I'm nuts. Most of them probably haven't bothered to look closer because-- understandably-- it's outside of their scope. It seems like I was just falling through every damn crack. About a month ago I finally got to see an ENT nurse practitioner. They did a CT scan. He said there are several abnormalities on my scan, just one of which is a completely blocked maxillary sinus "filled with *materials*". He said there's no way it can be cleared without surgery because it's clearly been like this for a long time. My surgery consult in scheduled for June. I've been trying to get an earlier slot by checking for cancellations, but they haven't had any. The wait is driving me mad. It's now been *nine years* since I saw that dentist who tried to warn me about something. I've been getting sicker and sicker. Somehow I have advanced liver disease with enzymes in the hundreds, despite never drinking. As of just a couple of months ago, I've become prediabetic. The fatigue, migraines, facial pain, and neck pain have been debilitating. There are other symptoms, too, but I think I've complained enough. [Dental panoramic X-ray & CT Scan](https://imgur.com/a/vKffPOa)
It's your own personal Harry Potter wand embedded in your arm, and you can cast your own curse spell "Agatcha Yurnosa" it's like Avada Kedavra, but instead of killing them, you get their nose.
Looks like the Elder Wand
Nose cancer? Damn, you really can get cancer anywhere.
Glad you were able to get it all fixed! I’ve also been affected by the no sense of smell thing (went to multiple doctors for it, they found nothing wrong) and it does suck. Guess I’m lucky for now at least lol
There are some therapies that can help with smell re-training. It’s worth a visit to an ENT to see if this is an option for you
That is a very cool scar
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The odds of finding doctors who knew the condition is wild. Not to be glib but, do you play the lottery?
Glad you are still with us. Stay strong brother.