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Post by kurtymac on Feb 10, 2014 17:28:57 GMT -6
Hello my name is Kurt and I am not exactly happy that I found myself here, but that is because I was diagnosed with a spinal tumor 4 months ago. I am a 26 year old Army Officer, went from running 12 minute two miles and 12 mile rucks with 35 pds on my back to not being able to stand for more than a half an hour. I cant even play a game of touch football anymore without walking off the field hunched over in pain. The Army health care system is far from stellar, this has gone on for a while, where nothing was seen. I had sever hip pain where I couldn't even walk, I had an arthrogram and a CT scan on my hip to see if I had a labrum tear. To my surprise the doctors never found anything, I couldn't figure it out, because I was in so much pain, but now it all makes sense! The pain got real sever during the month of March 2013. I had an X-ray and was told your fine drive on and take pain medication, although an X-ray doesn't show soft tissue. Finally 27NOV13 (I will never forget the date as long as I live) I was diagnosed with a intradural spinal cord tumor. I had to argue for a month with my PA, he said my last X-ray was good and did not see a reason to put me in for an MRI. After I walked into the head honchos office and said "Sir, something is wrong with my body, it does not work right anymore, please put me in for an MRI". He was able to get me in that day, during the MRI without requesting it, the radiologist said "hey we are going to shoot you with some contrast we might see something". They all had a depressed look on their face, I knew they finally found what was causing me so much pain throughout the years. However, I was astonished when I received the results, I asked if they mixed me up with somebody else. I live in Georgia and would appreciate if anybody had information for a good surgeon within the Atlanta area. I really need a second opinion, my doctor believes it is either a Nerve Sheath Tumor or an Ependymoma. The crazy thing is that the tumor is only 4mms! So small, but yet it is causing so much discomfort and pain! I am looking to get a second and even third opinion, because the first surgeon I saw doesn't think I should go through with surgery. I honestly do not see a point in living like this! I know I need surgery, I am just looking for the right surgeon to do it. On top of that, I don't even know if the Army is going to medically discharge me. I have gone through so much in my life and the Army is the only stable part of it, it has defined who I am as a person and I love what I do. I plan on fighting this thing to the end! Again, I appreciate any feedback and help, god bless all of you who find yourselves here.
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Post by jasonohio on Feb 12, 2014 9:58:56 GMT -6
Hey Kurt, I had surgery for an ependymoma in my neck a little over four years ago. I am doing very well now. I know it is all very scary, but if it is a slow-growing ependymoma you probably have some time to do research and make decisions. I consulted with multiple neurosurgeons before scheduling surgery. Dr. George Jallo did my surgery and I am very happy with the results. He is at Johns Hopkins. He reviewed my MRI and then emailed me his opinion/diagnosis (which was ultimately correct). I'm not sure he still does that, but you can email him. His email address is available at the JH website. I am doing everything I did before surgery, and in many ways I am healthier than I was before. I still have a sore neck and numbness throughout my body from surgery however. Email if you have questions. Take care, Jason
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Post by landofconfusion on Feb 12, 2014 13:51:31 GMT -6
Hi Kurt- Sorry you need to be here but you came to the right place. Where is your tumor located? I second Jason's recommendation to check with Dr. George Jallo at John's Hopkins for a 2nd opinion. If you contact him via e-mail, be sure to mention The Spinal Cord Tumor Association. gjallo1@jhmi.edu
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Post by kurtymac on Feb 12, 2014 14:14:19 GMT -6
Thank you both for the support, it is located between the L2 and L3. I was told it is most likely attached to the filum terminal. I keep getting told its very small, so doing surgery might not be beneficial. However, it is honestly debilitating, not even percocets help. The pain and numbness makes me feel like if i don’t have it removed, it will put me in a wheel chair eventually. I appreciate all of your help, I feel like nobody at work understands the seriousness of this .
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Post by landofconfusion on Feb 12, 2014 15:42:28 GMT -6
You know your body best and so you must be your own advocate. In addition to emailing Dr. Jallo, I would suggest maybe trying Emory University Neurosurgery for another opinion-- you'll definitely want to go to a major medical center since spinal tumors are so rare. I have no personal experience with Emory or any of their doctors, but it is a major teaching facility-- which is usually a good sign. Multiple opinions are recommended. emoryhealthcare.org/neurosurgery/surgeons/In my case, I've decided to live with my tumor for as long as possible-- but I'm relatively symptom-free. It sounds like your quality of life is suffering, so you're in an entirely different situation. Please keep us updated on your progress.
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Post by kurtymac on Feb 12, 2014 16:39:47 GMT -6
Yeah its getting pretty rough for me. Its weird because sometimes it doesn’t hurt that bad, however, sometimes it feels like somebody is digging a knife directly into my spine and twisting it. I think I am going to be medically discharged from the Army unless I can get better. Today my Platoon Sergeant said "its hard to push the guys in physical fitness, when my Lieutenant is sick and can’t physically do things anymore". However, if doctors are telling me they dont want to risk cutting it out, they are the professionals maybe I should leave it alone. It actully hurts a lot more when I sit down! Believe it or not I actully did contact Emory, I was told they have some of the best neurosurgons in Atlanta. My provider keeps down playing this, like oh well you can just go to the neurosurgon in town.. It stinks because I feel like I have done nothing but be grumpy and complaine a lot, when I am normally a happy person.
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Post by landofconfusion on Feb 12, 2014 23:49:03 GMT -6
It's imperative that you see a doctor with plenty of experience with intradural spinal tumors, which is why I recommended a large teaching medical university like Emory. This is not something a small town neurosurgeon probably sees very often. Please don't let anyone convince you otherwise.
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Post by kurtymac on Feb 13, 2014 8:06:23 GMT -6
Thank you for the advice, I agree 100%. Unfortenently others dont. My PA says, oh he willhave surgery and I see a full return to duty in 30 days. That honestly how they see it right now...
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Post by samuridude on Feb 13, 2014 9:11:05 GMT -6
Hi Kurt,
Obviously your PA has no idea what he's talking about. The reality of the situation is most of us have spinal bone missing and a damaged spinal cord. As disabilities go, spinal cord damage is right up there with amputated limbs. You have the right attitude, keep fighting and don't give up.
-Good health
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Post by kurtymac on Feb 13, 2014 11:59:35 GMT -6
Hey Samuridude you are completely correct. I can say it 90 times over until I am blue in the face and nobody will get it. I read your story and saw that you were or are an athelete as-well. I still workout, but the pain is starting to end that for me, I still beleive I need surgery I am just afraid of waking up and never being able to walk again.
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