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Post by samuridude on Feb 13, 2014 16:50:00 GMT -6
I still beleive I need surgery I am just afraid of waking up and never being able to walk again. I hear you, all of us have had those very same fears. They told me, I had a 20% chance of ever walking again. And for sure I was gong to have urinary and defecating issues, most likely I was going to be in a diaper. For some reason instinctively, I was sure this wasn’t going to be the way I checked out. I didn’t have much of a choice when the MRI came back, since my condition was considered life treating and a emergency. After a couple of hours into surgery the nerve monitor flat lined, so the surgeon stopped and advised my wife to expect a dismal outcome. I guess by the time the surgeon returned, I rebooted and all was well.
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Post by kurtymac on Feb 13, 2014 17:49:32 GMT -6
That is awesome to hear that you got through that! Sometimes I guess we are stronger than we really believe. Right now my physician is telling me that it’s going to be a hard sell getting me to a doctor outside of the area to have surgery with. I am pretty sure almost everybody takes Tricare and I will pay for the commute. I don’t understand what is happening here, but I know half of it is because they all think it’s not life threatening. I know I sound like a complainer, but this has been insaine from the start. I feel like I am dealing with children here, cutting into a spinal cord, working mms away from nerves that will possibly have me lose my mobility and other functions is seen as oh you will be alright. They havent even put me on profile in the military, people with strained muscles get put on profile, but not the guy with a tumor in his spine... I am the last person who wants to be on profile, but maybe important people will start getting the hint on the medical trackers to get me to where I need to be to get the proper care.
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Post by landofconfusion on Feb 13, 2014 19:34:01 GMT -6
I can imagine how frustrated you must feel. The doctor who ordered my spinal MRI (a spine specialist) didn't even notice the tumor on the film. It wasn't until I asked for a copy the radiologist's report that he proceeded to open the envelope and begin to read it for the 1st time. The first thing it said was that there was a tumor at L5-S1. You should have seen the look on his face at that point... But he quickly regained his composure & then he told me he wasn't even going to mention it to me because it was nothing but a cyst and not important.
I was so stunned at that point that I hardly knew what to say or do, but I came to this forum right away & was told to go to a major medical center and see a neurosurgeon with experience in spinal tumors. I went to 2 neurosurgeons affiliated with 2 different teaching universities and then I contacted Dr. Jallo for his opinion via email. What I discovered is that this is definitely a tumor and in an area that could potentially cause major problems in the future (bowel, bladder & sexual function). I would hardly consider any of that inconsequential.
The point of my story is that I know what it's like to be dismissed by a doctor (supposedly a specialist). If I hadn't asked for a copy of that radiologist's report, I feel confident I would not have known that the tumor was there. Furthermore, if I hadn't come HERE and gotten the advice of people who've been in my shoes, then I wouldn't have known what to do or where to turn.
I think I remember that awhile back ( a year or 2 ago) someone who was in the military came onto this board and ended up having their tumor removed at Vanderbilt in Nashville. I'll go see if I can find the forum posts for you. Maybe it would be helpful to you.
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Post by landofconfusion on Feb 13, 2014 19:40:18 GMT -6
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Post by samuridude on Feb 14, 2014 17:21:49 GMT -6
"But he quickly regained his composure & then he told me he wasn't even going to mention it to me because it was nothing but a cyst and not important."
Like a cyst on your spinal is nothing important. Sometimes I wonder if they are putting physician licenses in crackerjack boxes again?
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Post by landofconfusion on Feb 15, 2014 0:32:55 GMT -6
It was disheartening. The dismissive doctor I saw was practicing at a large spine center. Needless to say, once I had copies of my MRI and radiology report, I never went back.
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Post by kurtymac on Feb 17, 2014 19:06:42 GMT -6
Sorry all,
I have been pretty busy attempting to fight for my health care. I have started sending letters to higher command and have decided I don’t care if I have to go over anybodies head at this point. That is crazy with your doctor not seeing it! I have had the same issues in the past and wondered what was up. I was like this pain isnt fake, it is coming from some where. The funny thing is! I am a Medical Services Officer and know tons of medical personnel. You would think I would be able to get help; this just makes me think even less of the military's medical programs. I know one Colonel who has a mass removed last year and he is up and running now. It is amazing you wouldn’t think the guy even had it! He had his removed in Kansas, that is part of the reason everybody thinks I will be ok. They say well Colonel so and so had it removed, so you should be good.
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Post by kurtymac on Feb 17, 2014 19:07:55 GMT -6
Another funny thing is:
Some days I am alright, like today I feel ok its like it isnt there, but two nights ago I wanted to take a knife and cut it out myself. Had to take two percocets, It is weird how it fluctuates
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Post by landofconfusion on Mar 5, 2014 15:09:41 GMT -6
Just checking in to see how you're doing, kurtymac. I'm glad you've taken matters into your own hands and have been striving to get the help you need. I'm sure it must be frustrating at times, especially when you're not feeling well.
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Post by kurtymac on Mar 20, 2014 9:01:21 GMT -6
Sorry I have been busy with work and have tried to keep this off of my mind. Thanks for checking in with me! I recently saw my second neurosurgeon , have also spoke with Dr Jallo and send him my images and report. The army does not want to send me to Maryland, due to the distance. However, the neurosurgeon I spoke with seemed pretty knowledgeable. Everybody has recommended watching and waiting so that is what I am going to do. Personally Dr Jallo and myself both believe it will continue to grow. The warm weather believe it or not has made this much more bearable for me. Once in a while the tumor sends me a reminder, like "hey don’t forget I am still here". It is more than likely a nerve sheath tumor and is located in the vicinity of the filum terminale. It is in the middle of a bundle of nerves, not a great a place. The biggest issue I have is wondering where it came from! I have had plenty of x-rays/MRIs in the past or was it genetic or perhaps a medication I took? I guess you can go crazy thinking about these kind of things.
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