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Post by samuridude on Mar 20, 2014 10:33:31 GMT -6
. After much debate (and several hours) I was convinced it was the pain meds that were making it difficult for me to urinate. Sure enough, once I started taking Tylenol only for pain I have been back to normal. Of course Tylenol only had its own emotional and physical consequences, I am now walking around fairly comfortably, taking care of myself, pain is really fairly minimal. I am feeling very lucky and enjoying spring time in Oregon, feeling as though I will be back to my normal life soon without too much production. Appreciative of all the kind thoughts and energy of this board! Yep, most of the medication is counterproductive to the symptoms, urinary and defecation. As soon as I stopped taking the drugs normal functions returned.
-Good Health
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Post by pringleman on Mar 22, 2014 22:42:32 GMT -6
Hi Karen,
Great to hear that your op was successful. I am sorry I was not around to add to the support of you going in. I was dealing with radiation treatment and its delights. That all finished on the 10th (the day before your operation - uncanny there must be a law of conservation of ependymomas). I was hoping that I would be all good by now but still fatigued and burning. But generally pretty good; walking like a drunk or maybe a duck as my lower back refuses to unlock and getting back to 'normal life', even went in to visit the office on Thursday to plan my gradual return in April.
So now you and I are on a similar path to recovery. When do you expect to get the pathology report?
Will go and see what else is happening on the 'board.'
Take Care,
Ian
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Post by lw on Mar 23, 2014 10:50:23 GMT -6
Hi Karen,
I am so glad to hear that your operation went well. You must be relieved after all the pre surgery worry about whether or not to go ahead. Hopefully you will be back to normality soon and getting on with living your life to the full. You certainly deserve it after everything you've been through! Try not to push yourself too hard though.
Best wishes,
Leah x
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Post by funnywalk on Mar 23, 2014 16:28:49 GMT -6
Glad to hear your good news. And your positive attitude will help with your healing. Go forward! FW
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Post by karen on Mar 23, 2014 18:26:24 GMT -6
Thanks for all the support (as always), and good to hear from you again, Ian! I was hoping you would show up soon and have been thinking of you throughout my recovery. Glad to read on another thread that you have been out and about on a walk, beginning to see the light at the end of the radiation tunnel. As far as the pathology report, I imagine I will hear something this week. Judging from what they saw in the OR and this tumors size I am hopeful for grade one ependymoma. I walked through the cherry blossoms today at a local park. Being outside has been so healing for me and this tumor is a good reminder that it is good to be alive. The blossoming flowers and singing birds are good companions right now.
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Post by funnywalk on Mar 24, 2014 8:30:05 GMT -6
Absolutely! We are still here and we are rewarded with spring. Bring it on!
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Post by karen on Apr 3, 2014 10:25:38 GMT -6
Just a quick update. . . had my first post-op visit with the PA of my surgeon. Visit seemed to be primarily to remove stitches from incision and check up on pain and progress. Final pathology revealed that this tumor was the same as the one that was removed in 2004-myxopapillay ependymoma. It doesn't have a grade. . . but I think this is because the myxopapillary characteristics is a grade within itself (WHO grade I). I am relieved by this news, but frustrated that the visit didn't reveal much other than talking about having another MRI in June and then another appt with the neurosurgeon himself. I did get a referral to see an oncologist. . . which is scary, but I can appreciate my MD is likely just wanting me to get all the expert opinions available. The oncologist he recommended is actually at the Children's Hospital associated with the University Hospital where I had my surgery. Weird that I'm seeing someone there, but she looks like an ependymoma expert, so I guess that is what I want! Appt with oncologist is next Wednesday, I'll keep you all posted!
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Post by karen on Apr 10, 2014 9:30:49 GMT -6
Had an appointment yesterday with the most knowledgeable and kind healthcare professional yet! My neurosurgeon referred me to see a neuro oncologist. She assured me that the pathology of this tumor was identical to the one I had removed ten years ago, the fact that it came back is unusual but not unheard of, and that after total resection of a myxopapillary ependymoma she would never recommend radiation as the risks outweigh the benefits. These tumors have about 15% chance of coming back after total resection, the fact that it came back once does not mean it is more likely to come back again. All we can do is watch and hope. She was so reassuring, validating and empathetic. Told me that I should get MRIs every three months for a year but if I wanted to get pregnant before that, "you should live your life." The influence of a well informed and KIND doctor is so powerful. She also shared with me that she was familiar with my case as I had been discussed several times at the tumor board rounds since last fall every step of the way. Such a positive experience I am happy to share with you all.
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Post by pringleman on Apr 13, 2014 1:42:30 GMT -6
That is great news, Karen! Very Happy for you. Completes a great day for me.
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Post by funnywalk on Apr 22, 2014 15:18:54 GMT -6
Great news, Karen! So happy to hear your positive voice. Love and hugs, FW xx
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