- Sep 6, 2003
- 11,727
- 46
- 91
[vent]
i have had a neurological disorder for about 7yrs and we have been dealing with it. i see my neurologist at least every 3 mos along with other drs for the best course of action to rectify it.
for the last year and a half i have been undergoing continual therapy for my issue which resides in my upper back/neck. after the year and half of treatments i have gone through my neurologist gave me permission to start exercising again, saying just to take is slow.
so i start out by walking for some exercise, but soon realize something is not right. after a very short time, my lower back is in extreme pain, my quads in my legs are extremely weak and my whole back if "knotted up" and instead of the feeling of a normal back, it is like my entire back is "flexed" and hard as a rock.
i talk to my neurologist about this and family dr and they send me to pain management dr, which he orders a mri of my lower spine. while i was at the mri facility i had them send a report to both drs.
yesterday morning i get a call at 8:30 from my neurologist saying i need to get a mri of my mid and upper spine asap, and things seem a little off with the mri report (he is not trying to alarm me). i think no big deal, and i just so happen to have the mri films at home as i requested a copy. i open them up and have a look, even though i don't know what i am looking at, but i notice the tech is very curious of this item inside my spinal cord area, there are probably 50+ pics of this one item.
i call my neurologist's office and have them fax the report over to me. after reading the report, calling a friend who is a dr and looking some stuff up online it appears things are not so good. it turns out that the item the tech took so many pics of is a f*cking tumor inside my spinal cord and my lower spine - L2-L5 has all kinds of problems, bulging discs, extensive degeneration, tearing, etc. and the radiologists thoughts of what the tumor is based on the imaging don't look too good. the funny thing is that it doesn't hurt that bad (although i am on oxycontin, soma, xanax and a host of other meds for my other neurological condition, so maybe the pain i much worse than i can feel....), not bad enough that i would warrant this type of situation. what kind of freaks me out is that i have never had any type of trauma to my lower back, or upper back for that reason, my back has always been strong.
i guess i will have to wait to see my family dr monday and then i see my neurologist again friday....man, this is going to be an interesting week.
i just needed to vent in a somewhat anonymous way. thanks for reading
[/vent]
UPDATE 06/17/2006:
went to see my neurologist yesterday. after having him explain the films firsthand it all makes a lot more sense. the reality is that is is probably not cancerous, but will not be known until biopsy. it is in an area that it can be operated on. i go see a neurosurgeon on the 28th.
UPDATE 08/11/2006:
went to go see neurosurgeon for the 2nd time and the end result is that i will be having surgery to remove it by the end of the month.....
UPDATE 08/16/2006:
decided on a date and made arrangements for the surgery by the end of the month. had my pre-op exam at my gp's office - EKG came back "abnormal", now i am off to see a cardiologist - spinal surgery will have to wait until i get clearance from the cardiologist. unfortunately i have a long family history of cardiovascular problems so this is not really much of a surprise, but the timing f*cking sucks. mix that history in with the large quantity of injuries i have had in the last 5yrs and unfortunately exercise hasn't been able to be kept up
UPDATE 08/18/2006:
went to the cardiologist - the guy was a f*cking joke so i need to find another one. he didn't even ask or care about my past or family past medical histories just said "you have had a lot of stuff for your age" - no sh!t. i felt like a used car the mechanic is messing around with just so it can pass the state tests to get sold. the office was literally falling apart - cabinet doors missing or broken hinges, ceiling coming down, etc. i let this stuff slide at first thinking this guy should be pretty good based on his schooling, but unfortunately he fit the office. trust me, i don't really care what an office looks like, as i wouldn't care if i had a doctor giving me an exam out of a cave if he was good.
i will push the surgery back a week if needed to get a good, quality cardiovascular exam instead of a "doctor" playing the odds with my wellness and/or life....
UPDATE 08/24/2006:
i called my family doc and informed him of my dissatisfaction with the cardiologist, so he referred me to another one. this new one is on top of his game. he talked to my wife and i like we were people and had a 45+min visit with him, nor did he excuse my situation due to my age - i have only been trying to see a cardiologist for ~10yrs based on my family cardiovascular history. the news is i need to get a stress test and a electrocardiogram done, but it can't be done until the 31st, which means since my neurosurgeon is taking a long weekend for labor day, the earliest i can get in for the spinal surgery is either 09/07 or 09/12. this is if the stress test comes back and i am cleared.....guess we will wait and see. the stress test should last ~4hrs total, but i would much rather be safe and thorough than dead.
last night i typed up my living will, that was a weird endeavor, but it needed to be done in case something happens so my wife won't have to make decisions she knows i would want her to make but would be hard for her to do. interesting times these are...
UPDATE 10/23/06:
well, surgery tomorrow.....
UPDATE 10/30/06:
thanks for all the well wishes
ended up coming through pretty good. surgery ended up taking 6 1/2 hrs (was scheduled for a 4hr surgery) w/ a 2hr recovery. i was in neuro icu for tuesday after surgery until wed night @ ~6PM and then transferred over to the regular neurology floor. i ended up with a ~5-6" incision on my spine and the doc removed a tumor and something it was attached too - wich they are not too sure what it is yet - have to wait for more pathology, but not cancerous which was relief since it turned out to be the one that could have most likely been cancerous. he is a bit concerned pathology not knowing what it is at the moment so i am definately on a mri every 3mos schedule for probably at least the next year or until it is determined what it is.
finally got released yesterday and just basically slept the remainder as i didn't get much sleep in the hospital and rested for most of today between moving around as tolerated.
all in all i am doing much better than anticipated and seem to be getting better pretty quick. i am on just a bit more meds than i normally take so i am not too drugged up which is nice, they basically left all my meds alone and had me double a couple of the pain meds. in the hospital they had me add-on morphine too basically whenever i wanted which was nice as the pain was 10++. at some times it was to the point that i couldn't move, but that severity is gone at least for now and i am sitting at or around 8-10.
i will add more in tomorrow or the next day, i just wanted to drop by and let you all know i made it through and am not doing too bad again thanks for the thoughts
UPDATE 11/12/2006:
thanks again for the ongoing support
went to the neurosurgeon within the last week and had the top layer of stitches taken out. turns out i have about 6 layers of them in (so probably 150+ in total), some are actually around the nerves in the spinal canal - those are permanent and others are up through the muscles and skin, which are the dissolving type.
am dong better and better every day. i am actually surprised how good i am doing (knock on wood) and near pre-surgery medication levels.
i go on a couple small walks a day and am moving very well. sleeping is getting better and better. getting in and out of bed is easier and easier. i haven't had to ask my wife to help me up in a couple days
neurosurgeon still has me on severe restrictions but that is ok - the last thing i want to do is tear the sticthes in the muscles in my lower back.
i have had a neurological disorder for about 7yrs and we have been dealing with it. i see my neurologist at least every 3 mos along with other drs for the best course of action to rectify it.
for the last year and a half i have been undergoing continual therapy for my issue which resides in my upper back/neck. after the year and half of treatments i have gone through my neurologist gave me permission to start exercising again, saying just to take is slow.
so i start out by walking for some exercise, but soon realize something is not right. after a very short time, my lower back is in extreme pain, my quads in my legs are extremely weak and my whole back if "knotted up" and instead of the feeling of a normal back, it is like my entire back is "flexed" and hard as a rock.
i talk to my neurologist about this and family dr and they send me to pain management dr, which he orders a mri of my lower spine. while i was at the mri facility i had them send a report to both drs.
yesterday morning i get a call at 8:30 from my neurologist saying i need to get a mri of my mid and upper spine asap, and things seem a little off with the mri report (he is not trying to alarm me). i think no big deal, and i just so happen to have the mri films at home as i requested a copy. i open them up and have a look, even though i don't know what i am looking at, but i notice the tech is very curious of this item inside my spinal cord area, there are probably 50+ pics of this one item.
i call my neurologist's office and have them fax the report over to me. after reading the report, calling a friend who is a dr and looking some stuff up online it appears things are not so good. it turns out that the item the tech took so many pics of is a f*cking tumor inside my spinal cord and my lower spine - L2-L5 has all kinds of problems, bulging discs, extensive degeneration, tearing, etc. and the radiologists thoughts of what the tumor is based on the imaging don't look too good. the funny thing is that it doesn't hurt that bad (although i am on oxycontin, soma, xanax and a host of other meds for my other neurological condition, so maybe the pain i much worse than i can feel....), not bad enough that i would warrant this type of situation. what kind of freaks me out is that i have never had any type of trauma to my lower back, or upper back for that reason, my back has always been strong.
i guess i will have to wait to see my family dr monday and then i see my neurologist again friday....man, this is going to be an interesting week.
i just needed to vent in a somewhat anonymous way. thanks for reading
[/vent]
UPDATE 06/17/2006:
went to see my neurologist yesterday. after having him explain the films firsthand it all makes a lot more sense. the reality is that is is probably not cancerous, but will not be known until biopsy. it is in an area that it can be operated on. i go see a neurosurgeon on the 28th.
UPDATE 08/11/2006:
went to go see neurosurgeon for the 2nd time and the end result is that i will be having surgery to remove it by the end of the month.....
UPDATE 08/16/2006:
decided on a date and made arrangements for the surgery by the end of the month. had my pre-op exam at my gp's office - EKG came back "abnormal", now i am off to see a cardiologist - spinal surgery will have to wait until i get clearance from the cardiologist. unfortunately i have a long family history of cardiovascular problems so this is not really much of a surprise, but the timing f*cking sucks. mix that history in with the large quantity of injuries i have had in the last 5yrs and unfortunately exercise hasn't been able to be kept up
UPDATE 08/18/2006:
went to the cardiologist - the guy was a f*cking joke so i need to find another one. he didn't even ask or care about my past or family past medical histories just said "you have had a lot of stuff for your age" - no sh!t. i felt like a used car the mechanic is messing around with just so it can pass the state tests to get sold. the office was literally falling apart - cabinet doors missing or broken hinges, ceiling coming down, etc. i let this stuff slide at first thinking this guy should be pretty good based on his schooling, but unfortunately he fit the office. trust me, i don't really care what an office looks like, as i wouldn't care if i had a doctor giving me an exam out of a cave if he was good.
i will push the surgery back a week if needed to get a good, quality cardiovascular exam instead of a "doctor" playing the odds with my wellness and/or life....
UPDATE 08/24/2006:
i called my family doc and informed him of my dissatisfaction with the cardiologist, so he referred me to another one. this new one is on top of his game. he talked to my wife and i like we were people and had a 45+min visit with him, nor did he excuse my situation due to my age - i have only been trying to see a cardiologist for ~10yrs based on my family cardiovascular history. the news is i need to get a stress test and a electrocardiogram done, but it can't be done until the 31st, which means since my neurosurgeon is taking a long weekend for labor day, the earliest i can get in for the spinal surgery is either 09/07 or 09/12. this is if the stress test comes back and i am cleared.....guess we will wait and see. the stress test should last ~4hrs total, but i would much rather be safe and thorough than dead.
last night i typed up my living will, that was a weird endeavor, but it needed to be done in case something happens so my wife won't have to make decisions she knows i would want her to make but would be hard for her to do. interesting times these are...
UPDATE 10/23/06:
well, surgery tomorrow.....
UPDATE 10/30/06:
thanks for all the well wishes
ended up coming through pretty good. surgery ended up taking 6 1/2 hrs (was scheduled for a 4hr surgery) w/ a 2hr recovery. i was in neuro icu for tuesday after surgery until wed night @ ~6PM and then transferred over to the regular neurology floor. i ended up with a ~5-6" incision on my spine and the doc removed a tumor and something it was attached too - wich they are not too sure what it is yet - have to wait for more pathology, but not cancerous which was relief since it turned out to be the one that could have most likely been cancerous. he is a bit concerned pathology not knowing what it is at the moment so i am definately on a mri every 3mos schedule for probably at least the next year or until it is determined what it is.
finally got released yesterday and just basically slept the remainder as i didn't get much sleep in the hospital and rested for most of today between moving around as tolerated.
all in all i am doing much better than anticipated and seem to be getting better pretty quick. i am on just a bit more meds than i normally take so i am not too drugged up which is nice, they basically left all my meds alone and had me double a couple of the pain meds. in the hospital they had me add-on morphine too basically whenever i wanted which was nice as the pain was 10++. at some times it was to the point that i couldn't move, but that severity is gone at least for now and i am sitting at or around 8-10.
i will add more in tomorrow or the next day, i just wanted to drop by and let you all know i made it through and am not doing too bad
again thanks for the thoughts UPDATE 11/12/2006:
thanks again for the ongoing support
went to the neurosurgeon within the last week and had the top layer of stitches taken out. turns out i have about 6 layers of them in (so probably 150+ in total), some are actually around the nerves in the spinal canal - those are permanent and others are up through the muscles and skin, which are the dissolving type.
am dong better and better every day. i am actually surprised how good i am doing (knock on wood) and near pre-surgery medication levels.
i go on a couple small walks a day and am moving very well. sleeping is getting better and better. getting in and out of bed is easier and easier. i haven't had to ask my wife to help me up in a couple days
neurosurgeon still has me on severe restrictions but that is ok - the last thing i want to do is tear the sticthes in the muscles in my lower back.
Facebook
Twitter