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Post by Ed on Sept 28, 2014 6:06:43 GMT -6
Hi samuridude,
I read you were an athlete and fit physically before your surgery. I do exercise but am not as fit as I should be. I would be thankful if you could explain whether your physical fitness helped you in the recovery process?
Thanks, Ed
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Post by samuridude on Sept 28, 2014 10:22:57 GMT -6
Ed,
Being in top physical condition was kind of a double edged sword for me. Every time I went to the doctor with back problems they diagnosed me with straining muscles because I was so physically active and in excellent health. I really didn’t fit in the hospital beds either and it took 2 physical therapist to stand me up. I would of made a good marine, I’m just one of those people who never gives up. That attitude can be a pain in the butt for a care giver, just ask my wife. I was supposed to be in nursing rehab for 4 weeks and I signed myself out after 2 weeks. I just couldn’t move at the snail’s pace the PT wanted me too. As far as exercising 1 month post, my wife would help me into the old man’s bike at the gym. I would soak my shirt with sweat twice over then go home, load up on pain meds, and pass out for a couple of hours. I did that daily for 2 months nonstop. The next step was weights for building up back and neck. I did a lot of time in the steam room too, drinking plenty of water and sweating it out. I don't know how much it helped me physically, but mentally it was like I was doing something.
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Post by peaceandlove on Sept 14, 2015 2:01:08 GMT -6
Hello Ed,
Just like to Know how are u doing these days,
Would like to tell you I did my surgery in last Feb 2015, under neuro monitoring, Many cables connected to my head and my lower extremity and doctor make gross total resection of the tumor as he stated (no MRI yet). Motor function still same after surgery (all). No deficits. New Little tingling appeared after surgery in my legs which can be tolerated by lyrica & cymbalta and they subside with time. I cannot deny that post surgery I was disappointed, since my pain in my lower back, hips & anus haven't disappear. The reason of remaining pain can be still present because of 2 reasons :
1- Some minor remaining portion of the tumor may still be existing & located in a critical place which is still compressing. Only MRI can confirm this (as doctor is requesting for MRI after 6 month post-surgery). And in this case the pain will be disturbing me until the end of my life unless radiotherapy can be applied to me (only doctor can confirm this and waiting his opinion after MRI)
2- In this case we consider the tumor is debulked entirely, and no remaining.My chronic pain which was present for the last 5 years from 2010, affected my nerves in a way that the pain is burned (printed) into the nerves, this explanation is stated by the NASS (North American Spine Society , http://www.knowyourback.org),in this case even you remove the mechanical cause of the pain, the pain will persist. How is that? The way how they explain it and make it easy to understand is an example that they give for a screen and projecting the same image for one year onto this screen, even you remove the image projector after one year, the image will persist present on the screen, it will be burn into it. How to deal with pain in this case? I hear from many doctors and the media and the online, youtube... That there is electric stimulation which can be applied for a 2 weeks and it helped 80% of the patients, and there pain was reduced for about 80%.. And the one which was highly helping is the Calmare therapy as per Media (I didn't try it personally since it is not available in the midlle east were I live) N.B : The electric stimulation helps only in case the Mechanical cause is fixed, mean the tumor is entirely remove.
At last my plan is to make MRI and Know what is the cause of My pain. Dear reader if someone with spinal cord tumor resected have tried Calmare therapy please let us benefit from your experience..
Best of luck for you blessed people surviving in this huge pain.. You are heroes.. Keep fighting..
Peace and Love for you all...
Best Regards Peace and love
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Post by Ed on Sept 18, 2015 3:58:46 GMT -6
Hi Peace and Love,
It must be a good feeling to know the tumor is out, and with no deficits. Hopefully, the pain you are experiencing in other areas will disappear as you progress in your healing and doing the physiotherapy. As for the lower back pain, could be caused by a bulging/herniated disc. This could easily be diagnosed using MRI. I am having sciatica, lower back pain, tingling and back spasm. I thought these were caused by the tumor, until an MRI showed that I have herniated disc at L4-5.
I am still on the wait and watch list. This summer I visited Dr. Sala at the University of Verona in Italy. He, Dr. Kothbaur, and Dr. Jallo trained with Dr. Fred Epstein in the U.S. He stated very much the same thing that Dr. Kothbaur told me. The only difference is the costs, in Switzerland it will cost about fifty thousand USD, whereas in Italy will cost about ten thousand USD. Now, I have two experienced doctors to choose from.
By the way, in January this year, I visited NS at London Bridge Hospital in London and I was very disappointed with his method of operating. He told me that usually he does not pay attention to the monitoring during surgery, and he tells the nurse to shut it off as it gets too noisy by beeping continuously. I might do the surgery sometime in March next year.
Question: how do you rate the doctor and the hospital where you stayed for the surgery?
Good luck with your healing and keep us informed, Ed
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Post by peaceandlove on Sept 26, 2015 8:59:33 GMT -6
hello Edd,
No bulged disc, I make around 8 MRI before surgery..No physiotherapy since my motor function are excellent.. Before and after surgery.. The only think that my pain have limit now...before surgery it was expanding in my body very slowly from back pain to hips to anus to..... I cannot deny pain is little less now, but still there... I am not going to rate my Doctor until I make the MRI which will Judge Him... He put in report Total resection... If it is true then I can rate him 7 or 8 Over 10. The only problem that most Doctors dos not care about sensory nerves, the care about motor nerves because it is Shown to others.. He didn't help me by increasing the medication dos until I push him hard, and now after my several request for pain management he advise me for neurostimulation by electricity to monitore the pain.. he say rhizotomy isn't helpful for our case.. I have doubt about that too.... Advise me if you can about rhizotomy.. My surgery cost 15000 USD at John Hoppkins Lebanon/ under CMC... My doctor name is Ibrahim Saikali you can watch his surgeries online in youtube... Edd Please try to advise about Calmare if you can and about rhizotomy...
Thanks
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Post by Ed on Sept 27, 2015 12:25:05 GMT -6
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