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Post by Dawn on Aug 2, 2014 7:03:48 GMT -6
I will be seeing Dr Rhines about the intramedullary tumor in my spinal cord at C2. Has anyone seen him? Recommendations? Warnings?
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Post by Dawn on Aug 13, 2014 10:19:04 GMT -6
fyi - LOVED my experience with Dr Rhines and MD Anderson. So good to have the right team. Felt very supported and "heard" by him and his NP. I can't believe what a difference it makes to be in the hands of a team that I trust in contrast to my previous team with which I felt frankly, unsafe.
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Post by grials on Sept 24, 2014 21:13:28 GMT -6
Dawn,
The MD Anderson Brain and Spinal Center is phenominal. I had an intremedullary tumor removed from the C7 area of my spine on August 23, 2012. Dr. Prabhu was my nuerosurgeon, and I visit him semiannually for evaluation. A detailed post can be found under the hemangioblastoma section of this forum. Just over two years post surgery, I have no deficits. A little left side numbness on occassion, but I thank God every day for his blessings. Best of luck to you. The MD Anderson Team will take good care of you.
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Post by Dawn on Oct 6, 2014 6:56:51 GMT -6
Thank you Grials. I have had wonderful support, guidance and recommendations from MD Anderson. Unbelievable really, especially when compared to the unfortunate experience I had at Mayo. My whole life turned around because of going there. I now have a team in which I can place my trust. He recommended Lyrica and Celebrex for the neuropathy which is working very well without unpleasant side effects. I'm now back to work part time and even took myself on a vacation where I could participate in activities and am enjoying my life pain free!!!!!!!!!!
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Post by grials on Oct 6, 2014 20:06:29 GMT -6
Are you a candidate for surgery, or is Dr. Rhines monitoring the tumor for awhile? I am glad to hear you are happy with the MD Anderson team and that you are staying active. Good luck and God bless.
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Post by Dawn on Oct 18, 2014 7:36:21 GMT -6
The short answer is yes I am a candidate for surgery, but it depends on which surgeon you ask. Some will do it and some will not. The tumor is large and because of the location at C1-C2 it is a very dangerous surgery with quite a lot of risk. And as Dr Rhines states,
"It will not be a free lunch." In other words, I will have sensory deficits for sure and probably motor deficits post op. And all agree that my condition post op will be worse than I am right now. On the other hand if we wait until I have motor deficits (at present I only have sensory deficits) it may be too late to get the tumor out. So it is a difficult decision. Statistics are on my side in the sense that the mass is growing very slowly and I may have many years before it causes motor deficits. In which case I choose to wait. If things change we go in and do the surgery. But I am not in any hurry to do that.
It has helped me to read other people's stories on the forum. It is the only place I've found other people wrestling with the same decisions I am wrestling with. What a crazy situation! It sounds like you had a wonderful outcome. I'm going to go read your post in more detail so I can understand better how you made your surgery decision.
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Post by grials on Nov 13, 2014 21:54:16 GMT -6
Dawn,
I understand the approach being recommended. Dr. Prabhu felt fairly confident that my tumor could be removed with a favorable outcome. I still have strange sensations at times causing me to worry that the tumor is returning. I may go weeks with tingling in my left foot and quadricep, and then the tingling stops completely for weeks or months. I feel great right now...nearly three weeks with no symptoms at all.
Hang in there, and good luck. I check this board from time to time, because I know how it feels to live with a spinal tumor and hope we can all offer each other hope and encouragement. Take care.
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