IAmA 27 old male that had a rare tumor in my bone in my spine and lost 90% of my blood during surgery.

You lost 90% of your blood, had surgery done on your skeletal system, and you're still alive. I'm on to you, Logan.

next week ill show an xray of my claws

*inb4specialmed says they arent claws

Did Mengle have a vord vith you? :)

Mengle said his surgery would be 100 times more successful, but his I.D. read Angel of Death... so i said nein.

Would you say that the tumor was a...

puts on sunglasses

Pain in the back?

yes, a pain in the ass as well.

Do you have good insurance?

I had insurance, not exactly sure what constitutes 'good' insurance. But fortunate for me at the time, the job i had was paying me under the table. So i made less then X amount of money during the year and obamacare saved me a lot of money on my medical bills. Had i not had insurance tho, i would be heavily in debt. At the time of the last 2 surgeries, my medical bill crossed the 1million dollar mark

medical bill crossed the 1million dollar mark

Wow! Well, given this number and the fact that you're not heavily in debt, I would personally call it "good" insurance.

(unless you were already filthy rich beforehand)

touche. the medical care slashing my bills helped out quite a bit as well.

What was your reaction when you found out you had a tumor?

I was at the hospital waiting to see my doctor after the first CT scan watching my cavs face the miami heat, we lost of course.

I had even tried to prepare myself saying it could be something serious (ive had a bad health history with my family, plus had recently seen the movie 50-50 that JGL had back problems) and they initially told me it was cancerous. There was nothing else i could do, i broke down in tears and immediately called my family.

What do you think the odds of Lebron coming back to Cleveland are? Would you accept him if he came back? Do you harbor ill-resentment towards him?

lol. i think the odds are pretty good he will come back at some point. Cleveland is the only stain on his legacy, he will want to come back and try to make it right. Especially since its his hometown. Try to save face. Right now the King of Cleveland is Kyrie and Mr Charles Ramsey. He will have to earn his spot back lol.

Of course i would accept him. I'd have to be messed up to not want the best player in the league on my team.

What he did and how he did it was immature. Not business like at all. But its teh NBA. Players shouldnt be able to control the game like they can (teams, coaches etc) but completely understandable as to why he did it.

Did you ever suspect vampires?

i am now

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toughest question yet, but i might have to go with the classic blueberry.

What have you got against orange and poppyseed, you monster?

For a bagel, surrrre. Muffin? Nah, Blueberry FTW

Orange... bagel?

orange ya glad i didnt say banana

Was there anything that kept you positive throughout this process?

i'm generally a positive person to begin with, glass always half full kinda guy. once they determined that it was infact benign rather then cancerous, it wasnt really all that hard. i knew i would live, i knew i would walk, i knew i would run again. My family has had a bad health history and if my father could survive two battles with cancer, i could survive this lil fucktard tumor in my back.

Hey! Just wanted to say congratulations on everything going well for you. I've had a similar experience as of late with a malignant bone tumour taking residence to my brainstem. Three surgeries so far with a bone removed near C1-C2. I suffer from a Chordoma (A type of sarcoma but not so I understand it). I'm about to turn 20 in 4 days time. I find myself wondering a lot about the future - like you I'll need constant checkups in the future. No doubt your thinking process has changed a lot since you found out about the tumour, I'd just like to know how...if that makes any sense?

Thanks, keep well and prosper! ;)

Best of luck to you in your future testing & happy early birthday.

Now my whole basis of what I do revolves around my back. You don't notice how much of a factor it is until there is something wrong. I have to plan out my resting/sleep so that I will be able to function the next morning and so on.

As for even more distant future, I'm honestly not to worried about it. I like to live in the moment. If anything, this showed me that anything can happen at any moment. Seize the day. The past is the past and the future is what you create. The little things in life I start to notice more or have more appreciation of. As long as I continue to get better, or atleast push towards getting better, I'm happy.

Was your doctor's name Dr. Acula?

No, thanks to the wisdom of Mitch Hedberg.

What's your favorite episode of Breaking Bad?

oh man.... oh man. favorite episode? Geez. putting me on the spot. Maybe not episode but scene, would have to be when Walt goes to visit Tuco and says "this is not meth" Such a badass scene/transition for him into Heisenberg.

How the hell did you have a tumor on T13 when there are only 12 thoracic vertebrae?

oops. typo. T12. i read my first post a few times and didnt even catch that.

Also why did you have a CT scan? That makes no sense. The hardware in your spine would cause enough interference that any new growth would be completely obscured.

Lastly transfusions take 6 hours to become "active", why were you getting PT within 6 hours of post op?

i may not have explained everything in the best way. i kinda just quickly described it.

Surgery was on friday. was in ICU getting transfusions until Sunday. Tuesday was the first day they tried getting me to stand up and walk. Passed out. Wednesday passed out. Thursday I walked. Friday I walked the stairs and sent me home.

When it was coming back, to determine if the tumor was coming back or not they took an MRI (i mentioned it in another comment when i went to the emergency room)

I dont know much about the mechanics of CT scans or MRI scans really. I do know that I went to one hospital for a CT scan and it didnt come out clear because of the metal in my back, so they sent me to the main hospital for another CT scan and it was clearer. So i have to go to the same hospital now for the CT scans, not sure if different machines are better on hardware or not. But they worked.

im far from educated in the medical field, my apologies if you find any other things that might sound wrong.

So you got an MRI with a bunch of metal orthopedic implants in your back? 6 months post op? While most orthopedic implants including the nails and cage that you have are contraindicated for MRI after 2 weeks post op or contraindicated completely?

Also it doesnt matter how good the CT scanner is, there is no CT on the planet that would be able to phase out interference to assess cancer recurrence ever single cut would look like

http://radiographics.rsna.org/content/26/suppl_1/S97/F1.expansion.html

Either you have no idea what you're talking about or youre putting us on.

So you got an MRI with a bunch of metal orthopedic implants in your back? 6 months post op? While most orthopedic implants including the nails and cage that you have are contraindicated for MRI after 2 weeks post op or contraindicated completely?

yes, apparently. i didnt say that that ONE mri scan showed everything. the MRI was in emergency room, they got enough information to see that something was going on again, admitted me to hospital for 2 weeks for further evaluation & more tests.

Also it doesnt matter how good the CT scanner is, there is no CT on the planet that would be able to phase out interference to assess cancer recurrence ever single cut would look like http://radiographics.rsna.org/content/26/suppl_1/S97/F1.expansion.html Either you have no idea what you're talking about or youre putting us on.

i already said im not knowledgeable in the medical field, and its its not cancer.

it might not help that even the doctors and social workers were confused. they didnt know what it was. one second telling me its cancerous and will spread to my lungs. the next saying its benign.

i had to do a lot of my own research bout the final diagnosis, which was rare. http://en.wikipedia.org/wiki/Giant-cell_tumor_of_bone

whether you believe me or not, doesnt change anything. you can keep spell checking my post if you would like tho :)

fyi, a MRI is basically a giant strong magnet, any metallic implants, jewelery, and even some pace makers would be ripped out of you or dislodged. We are not allowed to put any one in a MRI machine if they have extensive implants regardless of the reasoning. The screws you got are most likely a titanium external fixation device, Depuy hardware by the looks of it, meaning its category 8 conditional, meaning an MRI after 2 weeks is contraindicated because it will dislodge the entire device. Not to mention that there would be so much interference any new growth would be obscured. Also its strange that you wouldnt get a simpler, more diagnostic, cheaper alternative like a bone scan or PET scan which shows tumor activity and has better results in this case than a MRI or ct scan with absolutely no interference.

Yes GC bone tumors are cancer, and fyi any uncontrolled cell growth that results in tumors and has the ability to metastasize are cancer. Its extremely curious that your doctors didnt explain to you that you have bone cancer, or that you might need radiation therapy or chemotherapy in the future.

Im sorry starting from line 1 I had a hard time believing this whole story. The fact that you dont know your own diagnosis, location of the disease, scanning modalities, worst case scenarios or even treatment options doesnt really help your case at all. Also it doesnt help that you said " one second telling me its cancerous and will spread to my lungs. the next saying its benign" is literally a first person version of the second line of the wikipedia article you linked.

fyi, a MRI is basically a giant strong magnet, any metallic implants, jewelery, and even some pace makers would be ripped out of you or dislodged. We are not allowed to put any one in a MRI machine if they have e>xtensive implants regardless of the reasoning. The screws you got are most likely a titanium external fixation device, Depuy hardware by the looks of it, meaning its category 8 conditional, meaning an MRI after 2 weeks is contraindicated because it will dislodge the entire device. Also its strange that you wouldnt get a simpler, more diagnostic, cheaper alternative like a bone scan or PET scan which shows tumor activity and has better results in this case than a MRI or ct scan with absolutely no interference.

yeahhhh this would be great to know going to appointments. i basically only knew the first line of your post. i never really questioned any of it. i just took it as it came and said lets do it. my sister is in the medical profession and she was the curious one. i know ive had an MRI with the metal in my back and i know it wasnt ripped out.

Yes GC bone tumors are cancer, and fyi any uncontrolled cell growth that results in tumors and has the ability to metastasize are cancer. Its extremely curious that your doctors didnt explain to you that you have bone cancer, or that you might need radiation therapy or chemotherapy in the future.

i was under the impression it wasnt cancerous until it metastasized, not just the ability. we did try radiation during the 14 day stay, we did 6 sessions while i was there and then finished at 24 as outpatient. it didnt help. then we went to the surgery. which you will prolly think i just made up since u mentioned it but tbh i forgot completely. see below for more

Im sorry starting from line 1 I had a hard time believing this whole story. The fact that you dont know your own diagnosis, location of the disease, scanning modalities, worst case scenarios or even treatment options doesnt really help your case at all. Also it doesnt help that you said " one second telling me its cancerous and will spread to my lungs. the next saying its benign" is literally a first person version of the second line of the wikipedia article you linked.

as for the validity of this, its true. i could take a picture of my scars to prove it. back brace & cane. i admitted to my lack of knowledge to the whole medical part of it all, which i didnt take in to account before making this ama.

but truthfully, whehter you believe me or not. does not effect me in the slightest way. im "new" to reddit but not new to the internet. i understand the idea of false information and earning reputation for lies. this was neither of the two. i made this because i get asked a shit ton of questions in real life and on the internet, so after being around for a bit i decided to make the ama after me just posting the xrays didnt get any response. i learned more from this then anyone else will.

In all honesty this entire story could be completely true but the way that you laid out the facts and presented it made it seem unbelievable. My experience with reddit is when people have extreme medical stories and are poorly informed about it, theyre usually bullshitting.

Understandable. I was not prepared for this as I should have been. That's what I get for browsing reddit high.

What is the recovery process like?

Recovery prolly sounds better then it was, just involved A LOT of bed rest and relaxing. Thanks to piracy, this was rather easy and went by fast. Plus my father built a 'table' that went across my bed that i was able to put my computer, xbox and any other entertaining things on to keep my occupied

Though initially it was some of hte worst pains ever. Could only sleep sitting up. Zero appetite. Any rotation/movement in bed or to get out of bed was horrific. Very painful but i have high tolerance for drugs apparently so I just dealt with the pain on my own for the most part. Needed a cane to walk. Couldnt use a shower for a weeks initially. Got bed sores on my feet/legs from being in bed too long.

Right now, i feel fine. Occasionally i feel like there is a bubble in my back and it needs to be cracked. Not to mention my whole lower back and front by my ribs are completely numb. Standing on my feet for serveral hours at a time is when im at my worst. Now I can kind of predict when i will be in pain, if i have a long day, the next day i might not even be able to move/stand.

Well that's good. Computer, Xbox, other entertaining items. You were set!

Oh man I bet. What kind of pain was it? Like a severe "ache", sharp pain, something else? What did you eat while you were recovering? Man, I couldn't stand being in bed for that long, I would go crazy. I bet it was annoying.

Good, glad to hear! Will you recover any feeling in your lower back/ribs? Your symptoms sounds like my grandpa's when he had his (multiple) back surgeries. He couldn't stand long without the pain hitting him. Thanks for the answer!

The worst pain i had was when it was starting to come back, went to the emergency room. One of the doctors on call had me lay down and moved my legs to test a few things. When he did that, it must have struck a nerve. Put me in the most pain i ever was, got off the bed and no matter what way i was, i was in pain. standing, bent over, kneeling, none of it mattered, tears just poured out of my eyes. that was like a sharp pain like a knife sticking in my back and someone twisting it.they gave me an IV of pain meds so that i could get a MRI done. by the time they took me down to radiology the meds had worn off and i was in stuck in the mri machine in pain trying to stay still. miserable.

The initial pain that lead me to seeing my doctor was pretty bad too, but not as bad as that. One day woke up (after not really being able to sleep from the beginning) and all my nerves on my side were messed up. i could punch myself and it wouldnt hurt, but running my nails or a bed sheet across my skin was torture. So it was pretty much more nerve pain for me then it was my back exactly (at the end).

Being in bed, the first time around wasnt all that bad. I had gigs upon gigs of shows/movies to watch and games to play. tried to sleep a lot. ate a lot of bagels and cream cheese for some reason. the second surgeries i was bored beyond belief. still had gigs of entertainment but i ltierally counted down days til i could get up and do something.

Yeah the feeling will eventually come back, its slowly coming back now but will prolly take over a year or 2 to fully get all my feeling back, granted i dont have any other surgeries. My nerves from my waist down and on my left leg are still messed up a bit too.

Ouch, I feel for you man. That sounds rough. At least you are doing better.

That's really weird, those nerves can be terrible sometimes.

At first, being in bed all day sounds great, but it gets boring after a while for me. I would probably load up on Ice Cream, but that's just me. Ha, I bet.

That's good! Hope you recover well.

thanks!

I hope I'm not too late but wow this is a tough story.. I support you and wish you the best! Now my question: can you grow old with this condition(?) ?

Thanks for the support. I'm sure I will be able to grow old and live a normal life as long as it doesn't spread to my lungs and get worse. They could alternatively keep me on steroids if later in my life it returns and im too 'fragile' to be operated on.

Do you have any pictures of yourself before and after the surgeries?

to show what? my scar area or are you asking for validity reasons as well?

nothing really to show minus the scar tissue.

Yah, if you don't mind showing pictures of your scars, I'd be very interested to see them! :) I'm also curious of how losing so much blood affected how you looked after surgery... Sorry if this is too intrusive!

Yeah I can, I also have a picture my ribs when i was in the hospital still. I dont physically have them but once I get ahold of them I can upload them.

The blood loss didnt really effect much visually minus my ability to walk right away because of the circulation. Which I was able to overcome once i was sitting upright and the blood traveled through my body.

Now the only difference is before where I would be warm/hot all the time and sweating. I find myself colder and not sweating as much. Kinda odd.

actually found the pictures on my other phone card -- http://imgur.com/a/kUJDV

Wow!! And thank you! I didn't realize how big of an incision it would be! How visible is the scar today?

My back is pretty visible but my ribs arent as bad. The back they had to cut, let it heal, and then months later they cut in the same spot, so maybe it won't heal as well as my ribs since they did an incision in the same place twice.

People die when they lose blood because of blood pressure. Without a certain volume of blood in the circulatory system, pressure drops and the brain cannot be oxygenated. I believe even 10% blood loss can be fatal for this reason. Is there a part of the story I'm not getting?

I was in surgery and they were prepared for me to lose blood. They embalized (sp?) the area that was feeding the blood to try to prevent massive blood loss but it didnt help. But it wasnt like I lost all my blood, which i might have made it sound. When losing blood they were feeding me more. Then finished off with more in hte ICU.

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I'm the same way about needles, but thank you for donating. It really does help.

Umm...I wanted to make an Arnold joke. But I won't.

it IS a tumor

Keep strong :) I Hope you will be alright

thanks!

Were you dead when you lost "%90" of your blood?

no, while losing it they were giving me some as well

Ugh. Shit. I have back pain. What was the pain like?

The worst pain i had was when it was starting to come back, went to the emergency room. One of the doctors on call had me lay down and moved my legs to test a few things. When he did that, it must have struck a nerve. Put me in the most pain i ever was, got off the bed and no matter what way i was, i was in pain. standing, bent over, kneeling, none of it mattered, tears just poured out of my eyes. that was like a sharp pain like a knife sticking in my back and someone twisting it.they gave me an IV of pain meds so that i could get a MRI done. by the time they took me down to radiology the meds had worn off and i was in stuck in the mri machine in pain trying to stay still. miserable.

The initial pain that lead me to seeing my doctor was pretty bad too, but not as bad as that. One day woke up (after not really being able to sleep from the beginning) and all my nerves on my side were messed up. i could punch myself and it wouldnt hurt, but running my nails or a bed sheet across my skin was torture. So it was pretty much more nerve pain for me then it was my back exactly (at the end).

worst pain ive ever felt

Starting volleyball today so it will be the deciding factor on how "well" i actually am. My first activity I have been able to do in years. So excited.

That's awesome. Just curious, why volleyball? Is it part of the PT/rehab training?

no, i didnt do any PT outside of the hospital after surgeries when they wanted me to walk. All recovery was done on my own.

I just recently started jogging a few weeks back for the first time in a few years. and the 'shock' of running on concrete was painful to my back. i wanted to play basketball but it would be too much with the concrete and all the running and movements. the sand volleyball is much easier on the body.

btw. if ur curious. volleyball went better then expected. there were a few movements where after i did it i yelped 'i prolly shouldnt have done that' but today i dont feel as bad as i thought i would. I was more sore after St Pattys Day then i was after volleyball.

Any weird experiences during the surgeries, while you were under? Seen any realistic / vivid dreams or such?

Quite a few people report weird stuff during long complicated surgeries lik yours.

No nothing during the surgery. Idk if that had to do with me being a 'big' guy and had to give me a lot of drugs for such a big surgery i dont even remember being awake the night after my surgery but apparently i had conversations with my family and told them id would 'catch you on the flipside' like in boondock saints. i dont remember anything til mid afternoon the next day

i have had some nightmares tho since then about having the surgery again. those arent pleasant.

I had an astrocytoma in my spinal cord which caused a need for two surgeries, but it sounds like you had a much tougher go of it. I just wanted to have a spinal tumor bro moment and say congratulations on the clean CT.

Question: I permanently lost sensation over large portions of my body; have you experienced any of the same?

Congratulations to you as well (surviving a spinal tumor, shits scary). My last surgery was this past December so I'm still regaining some sensation. My nerves in my left foot are oddly messed up as well, along with my back & midsection. Everything is slowly getting better.

How long ago were your surgeries?

My first was in 1994, and my most recent was 2000.

Did you have 2 of the same surgeries or was it different the second time around?

BTW, I read the part of your post about recovery, and I am amazed at how quickly they had you on your feet. My memory is fuzzy, but I don't think that I could stand within the first week. You said that you are getting into volleyball, what kind of limitations are you finding as you attempt athletics?

The 2nd surgeries the doctors sent me home 2 days earlier then originally thought because of how well I was already walking around the hospital. Jogging and basketball are rough. Basically anything on concrete sucks. Volleyball will be attempted for the first time tonight. I can do the motions, just haven't tried on the sand. Could be interesting. Good thing its a low end rec league at a bar.

Were you all wrinkled like a raisen?

yup.. smelled like one too.

Much love man, you are seriously a boss. This is bravery and i commend you, please continue to fight hard and live and love harder. Enjoy volleyball!

Thanks for the support!