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Post by dmdgood on Jan 7, 2016 16:07:10 GMT -6
Thanks Mac, you also have an exceptionally positive attitude, which motivates my positive attitude further. A very good friend of mine who is also on this forum has said many times "Be brave, what other choice do we have". "Be brave" can easily be substituted with "Be positive".
Re the Internet, I also find it very valuable in living with this tumor. When I was first diagnosed I read every journal article I could get my hands on. While I learned a lot theoretically, what was missing was people's experiences (as opposed to McCormick scale), and the exceptions/ everyday miracles, which are plentiful on this forum. I'm sure you'll be one too - you have so far!
It is hard watching and waiting. Some days I just want the thing out, but then I'm also grateful that there is no urgency to have surgery as it's not affecting my sensory or motor function in any significant way, and of course I don't know what the outcome will be.
I am also having my follow up MRI on about the 25th this month. As that nears my anxiety goes up, but in my heart of hearts I know I haven't gotten worse in any way since my last MRI six months ago, so that is helping me curb the anxiety. I will be sending positive vibes your way on the 25th for a good outcome. Please post to say how it goes.
DM
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mac
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Post by mac on Jan 8, 2016 21:39:28 GMT -6
DM, To speak from the "opposite side of the coin" sort of speak, i don't believe removing a tumor that is not threatening your health or abilities is necessary. I know i did not have much time between the discovery and removal of my tumor. To tell you the truth i cant even remember all the health issues i had leading up to the removal. If it wasn't for my wife's memory and reminding me of the deficiency's the tumor was creating i started second guessing having it removed. I definitely needed to have it removed but the issues and pain that has developed weeks after the 28 days of radiation had me second guessing for awhile. I was told that two weeks after radiation the pain would start to subside but it actually increased. Being stubborn i refused the Decadron until three days ago. Within one day of taking the Decadron i was feeling 100% better. Another thing that we have realized after many discussions is that their might have been other signs that i had a tumor but the connection was never made. We will continue to educate ourselves as will you i'm sure. I wish you the best of luck with your MRI and please share your results with us. I will continue to share everything i can that i think will help others in our mutual fight against our tumors. I will be looking forward to hearing the results of your MRI. I'm sure your positive attitude will be reflected in your results. I will post my results as soon as i have them.
MAC
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mac
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Post by mac on Jan 28, 2016 16:47:53 GMT -6
Finally, I got to meet with my Doctors and review my 6 month MRI's. I must say after the last 3 1/2 weeks of DEX and having every bad DEX side affect which landed me at RUSH twice i was ready for some good news. Sitting in the room at the Doctors office with my "DEX" attitude i was loaded with questions. My Neurosurgeon showed up first and then we were joined by my Oncologist. They both agreed that i have had an incredible recovery and the "DEX" took care of the Edema in my spinal cord. My Astrocytoma is smaller and stable after the Radiation. They both agreed to start weening me off the "DEX" and Gabapentin(3600mg day 6 months)I've been taking daily. I cannot wait to clear these drugs from my system and start fresh. Not sure what to expect but i cant wait to see how it feels. Unless something changes i will be on 6 month MRI's and hopefully get back to the most normal life i can. I am still going to meet with a NeuroOnclogist at my Neurosurgeon's recommendation to start a relationship for the future when or if the tumor decides to change. Until then I am going to get rid of this weight "DEX" put on me, get back to the health club, and try to get as healthy as possible. I know this life changing event has put a big strain on my Wife, two children and the rest of my family, so i cant wait to be as close to the "old me " for them that I can. I haven't had such a positive outlook for the future in a long time and i'm enjoying every minute of it. Like everyone on this forum i have been through a lot of different issues related to my tumor, medications etc. I hope that if anyone thinks i can help them through something they are dealing with that they will message me. I learned a lot the hard way and i hope others don't have to. I wish everyone good luck in their fight against these tumors.
MAC
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Post by dmdgood on Jan 29, 2016 17:38:55 GMT -6
Dear Mac. That is wonderful news about your tumor being smaller and stable after treatment. I can imagine, and its obvious in your post, how elated you must feel. It provides a whole new perspective on life and an "I can do anything" attitude. Remember this feeling if ever you get down - it's always within you to draw upon. Your recovery seems to be in an upward spiral, and that is great to hear.
My MRI was postponed until 8 Feb, so I still have a couple of weeks to wait until I find out if anything has changed since last July. As I said in my last post, I am positive that my tumor hasn't grown as I have not experienced any further symptoms. It's just the anxiety of it that I am dealing with. Anyway, I will let you know how that goes.
I'm wishing you all the best now for getting healthy and fit. I'm sure you'll do it - procrastination and lack of will somehow evaporate when one has faced something like what we have.
I hope to hear from you again to hear how you're going. All the best. DM
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mac
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Post by mac on Jan 31, 2016 10:22:46 GMT -6
DM I can honestly say i know exactly what your feeling in regards to the anxiety.Once at my MRI appointments the anxiety just left me and i knew was finally going to get some answers and know my future. I'm sure you are right and you know your body and your tumor has not changed. Good luck with your MRI'S. I will be looking forward to hearing your positive results.
MAC
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moa
Junior Member
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Post by moa on Jan 31, 2016 16:38:17 GMT -6
Sounds like a similar situation to me. 29 year old male with some numbness in my right foot. Symptoms began nearly three years ago. Three months ago, neurologist found a tumor from T6-T10 that is either an astrocytoma or ependymoma. No way to tell which it is until biopsy (which won't be until surgery). Went to Dr. Neil Martin at UCLA and he suggested immediate surgery. Got a second opinion from someone who specializes in spine who suggested a wait and see approach - so that's what I am doing.
Hoping it doesn't kill me or paralyze me, but it seems like folks are having decent outcomes.
Happy to discuss.
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mac
Junior Member
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Post by mac on Feb 1, 2016 6:13:01 GMT -6
MOA I think my situation was very close to the same as yours. My neurosurgeon felt it necessary to remove as much of my tumor as possible because of the effects it was having on my body and my ability to function . If the tumor is not creating issue to your abilities to function and live your normal life i think watch and wait is probably a good option. The biggest thing in my opinion is listen to your body. If you start having other issues and some you might not think are from the tumor get them checked and proceed from there. I think one of the best thing to do is educate yourself about these tumors we have. The forums on this website have a lot of information as do numerous other websites. If i can answer any questions you have feel free to ask.
MAC
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moa
Junior Member
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Post by moa on Feb 1, 2016 16:54:45 GMT -6
Thanks very much, MAC. Biggest worry I have now is how disabled I will be as a result of the surgery. My symptoms (at least for now) are still pretty mild - some numbness in my right foot and calf. I can still ride my bike and generally do what I like to do (other than running - but I never liked running anyway!). I'm afraid the surgery will render me fairly impaired and make it tough to do the things I like, let alone keep up with the kids.
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ken
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Post by ken on Feb 1, 2016 17:27:34 GMT -6
MOA As stated before, I have been going to Dr. Neil Martin at UCLA. Since I am now in the wait and see phase, I have been doing research and sending out my scans to other surgeons in the United States that have more experience with spinal cord tumors. Dr. Neil Martin has helped me get in contact with these surgeons. It seems that for a lot of us the only thing we can do in the meantime is be prepared for the surgery by having the right surgical team ready. Recently I have noticed an increase in symptoms when I move my head in different positions I feel a weird numbness throughout the right side of my body. It definitely has me worried. The hardest thing for me is planning for my future with this in my back. This is not a normal situation for anyone to be in and although I am positive about the outcome, it is hard to plan a future pretending everything will be alright. There is a probability things won't be alright which is impossible to ignore. This leads me to my next point; My current situation I have been working as an engineer but don't feel any passion or purpose to my job. If I did not have the tumor my plan would be to push through the job for a year or two to gain experience and money to pursue a different job or passion. The tumor in a way has been a blessing because it has shown me to cherish every moment and not to waste time and I have considered quitting the job to pursue another interest. Has anyone else had feelings and thoughts that relate to how I feel? I still have my job and am still debating whether to take this risk.
Nevertheless, I have hope with medical advances and great surgeons that all of us will be alright, and I am glad this situation has taught me to cherish every moment and the special things in my life. Anyone have any other thoughts?
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moa
Junior Member
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Post by moa on Feb 1, 2016 18:37:15 GMT -6
Thanks, Ken. I hear you about making life count. I've pulled back a bit from work to spend more time with my family, so definitely understand. Also banking on advances in medical procedures to hope with the outcome once surgery is necessary.
Can I ask you who else Dr. Martin referred you to?
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