I like to introduce myself. My name is Robert Puffer. I go by Puff and live in northern Montana. I'm a 62 year old male. I have been and still am very involved with the bladder cancer webcafe and also the BCAN group for bladder cancer. I had a procedure done on my neck (in my neck)...a fusion I believe a year ago at Mayo Clinic. I believe a disc was fused and a spinal decompression was done. I had a long recovery (almost 4 months). Come June, I started experiencing some of the same symtoms I had initially prior to my procedure. I returned to Mayo...had 3 MRI's, X-rays, EMG and was told that fusion has taken place and there were and/or should be no problems. I saw both the neurologist and the neurosurgeon. Now, it is a year later and I am experiencing the same old stuff...numbness in my feet, two fingers on my right hand, sore arm and, as of recent, there is an occasional clicking or popping when I move my neck up and down. I have become somewhat of an expert on bladder cancer...in fact, I invite any of you to visit the bladder cancer webcafe where you can hear three of my radio interviews (I'm in the media) with two of the country's top bladder cancer doctors...Michael O'Donnell from the University of Iowa and Donald Lamm formerly of Mayo and now with BCG Oncology out of Phoenix. My point being that I know nothing about my current problem. I am happy to say that after some 20 BCG treatments, I remain NED (no evidence of disease) at this point in time. I have fought this cancer for 5 years. I would like to hear what you all think I should do. I still believe in Mayo 1000 per cent but I feel my pleas fall on deaf ears when the MRI's, X-Rays, EMG's are or appear normal. I have considered getting a second opinion here in Montana. I know that things aren't normal and/or what they should be and perhaps there is nothing that can be done and I may have to live with this the rest of my life. I would to think pretty long and hard to consider any kind of surgery again after this experience. I would like to hear from any of you and you can feel free to write me privately at: robertpuffer@webtv.net. I'm not sure how to post and how to read on this forum but I am going to give it the old college try. I am really hurting. With my bladder cancer, I had stents put in from my kidneys to my bladder for 6 weeks of BCG and I tolerated all that reasonably well plus the additional 15 or 16 treatments when the stents were removed so I don't think that I am one that overreacts to pain or discomfort. I will say that I consider myself a "proactive patient" which may be another way of saying that I am demanding but I believe one has to be. best regards, puff in montana

Hi Puff

I'm new on these boards, too, and I'm talking to you from the other corner of the world. Gee, I'm afraid I can't help you out there with something concrete, I'm not even sure if I understand what all is going on with you (with your neck, that is), but I thought I would respond to you anyway, if only to sympathize with you. Well, although I'm somewhat ashamed of sounding foolish or inadequate, I thought maybe... well, what's your take on alternative medicine? Osteopathy, shiatsu, Chinese Medicine, etc? Or body practices such as Pilates, Yoga, and GPR (Global Postural Reeducation)? Have you ever tried any of these out? Do you think they would have any value for your case?

Keep us informed and go on eating as healthily as possible. Good nutrition is also vital, as you know.

Cheers,

José

Welcome to NeuroTalk Robert (Puff). I don't find a specific forum for bladder cancer so am not sure where to point you...*grin. But you'll find a lot of caring people here but just jump in anywhere.

Hi, Puff! Welcome to NeuroTalk!

MT has some beautiful territory, I just made a trip out that way and loved it.

I think you might benefit from a look at our spinal disorders forum, the good folks there have had a tremendous variety of conditions and someone might know more about what you're experiencing. http://neurotalk.psychcentral.com/forumdisplay.php?f=22

Have fun and we'll see you out there.