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Old 10-13-2017, 06:03 AM #1
John Nevro User John Nevro User is offline
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John Nevro User John Nevro User is offline
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**

I decided to join this forum to see if I could find and relate to people going through the same thing. Pain support in Connecticut is horrid. Not Nevro though, they are always available. A Beacon of light in the night.

I have 10 bad discs, 5 ruptured, considered inoperable, four Interbody cages in my Lumbar Spine, a 3.5" Titanium plate in my neck, these hold 5 discs together. I have 2 Thoracic discs that give me much problems breathing. Sometimes I can only breath out without pain, and must be hospitalized. I am not looking for sympathy. This started in my mid teens, I am almost 60 years old. I have lived an extremely full life, sailing 10 meter boats, at times single handily, I had a pilot's license for a while. I am an avid motorcyclist, and I enjoy fast cars, and blueprint and rebuild engines. Much has slowed down as of recent, due to the exacerbation of my pain issues. I have a 17 year son and a wife, who I cannot believe has stayed with me through all this.

I am Christian. I am a Catholic Christian, Katolicos, the Universal Church of God, I converted 12 years ago. I do not judge people, nor do I proselytize. I have friends of all religious, faiths and creeds. I do believe in the universality of God, even for those who believe but cannot put a name for their belief. In short, we are here for each other. In my honest opinion.

I seek any help offered and offer myself as a sounding board. I can listen and do. I can share. I accept advice. I hope I can help and be helped. I am one of you. I know this from reading many many posts. Thank You for having me. **

I have been in pain my whole life, and it is getting worse. I know this won't go on much longer. I feel it. I hope to share my experiences so those who are younger, or at the same spot, can help ourselves continue to the fullness of our journey's end with dignity, love, and support. I hope that wasn't too much. I am just me, no one special, but as special as anyone here, for I do love myself. I also love people. We are afflicted, not damned.

Last edited by Chemar; 10-13-2017 at 12:31 PM. Reason: Moving to own thread & NT Guidelines for new members
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Old 10-13-2017, 12:35 PM #2
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Hello John
Welcome to NeuroTalk.

I have moved your post to it's own thread as you had placed it on a thread from 10 years ago. This way you should have more direct interaction with current members.

I'm also going to link the forum guidelines to help with any posting questions you may have Community Guidelines -- Updated 4/8/2015
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 10-13-2017, 04:15 PM #3
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Hi John

Welcome to NeuroTalk .

I hope that you will find the community as knowledgeable and supportive as I have.

I am sorry to read about your spinal problems. You might like to check out the Spinal Disorders & Back Pain forum (https://www.neurotalk.org/forum22/).

Apart from that the "Search" function (top of all NT pages) might help you to find topics of interest to you.

Best wishes.
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Old 10-13-2017, 07:37 PM #4
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Hi John, I can relate completely. I've lived a full life, have had much joy and happiness intermingled amongst 40yrs or more of pain. I agree our stories are worth sharing. I believe life is for living, pain has on many occasions held me back, pushed me down & trampled me in the dirt, but I prevail. I will give my all for as long as I can.

We, my husband and I have recently been adopted lol. A young 21 year old girl, with many many lifelong emotional issues & drug abuse has become a large part of our lives. She brings much joy to our little family. She who has been abandoned by her own. I'm not sure how long she will live with us, there are many obstacles to cross, but for now, she has lived with us since August 18th, it feels like a lifetime and she has become family.
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I can still remember what life was like before pain became my life long companion

Last edited by PamelaJune; 10-13-2017 at 09:44 PM.
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Old 10-14-2017, 05:56 AM #5
John Nevro User John Nevro User is offline
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Quote:
Originally Posted by PamelaJune View Post
Hi John, I can relate completely. I've lived a full life, have had much joy and happiness intermingled amongst 40yrs or more of pain. I agree our stories are worth sharing. I believe life is for living, pain has on many occasions held me back, pushed me down & trampled me in the dirt, but I prevail. I will give my all for as long as I can.

We, my husband and I have recently been adopted lol. A young 21 year old girl, with many many lifelong emotional issues & drug abuse has become a large part of our lives. She brings much joy to our little family. She who has been abandoned by her own. I'm not sure how long she will live with us, there are many obstacles to cross, but for now, she has lived with us since August 18th, it feels like a lifetime and she has become family.
That is really beautiful, what you are doing. I canot say I don't have my down moments. Connecticut is on a "Opio" scare, and even though I have been on the same amount for over 5 years, they center just had enough, and an APRN had me booted out. I titrated myself off of Morphine in two weeks. I am down to one pill a day, in much more pain, but felt no kind of withdrawal symptoms. My pharmacist says it is because I burn it up. He is disgusted by how these doctors have been treating me. I've known my pharmacist for over 10 years It's a problem getting pain management. The Nevro Unit only helps my feet. This may not sound like much but my inner arches were experiencing Neurapathy, they hurt really bad, and itched so bad I made them bleed unintentionally from the scratching. The Nevro Implant stopped that sensation in two days, and my arches have free up. It no longer feels like someone is hitting me in that area with a Hammer when I walk. I can walk much further, and can now go food shopping through the store without having to stop and rest. These kind of miracles keep me (us) going, even though the Doctor that put it in kicked me out of his practice on the word of an APRN, who told me he knew more pain management than the Doctor, and had me booted before I could explain what happened. This APRN had been pushing me hard to get on Medical Marijuana. Been there, Done that. For me, it just didn't work, and made me very depressed and paranoid. He had an agenda. I did not buy and asked him to please stop. This infuriated him. If that works for some people great, but in Connecticut, it can run $400 dollars a month, and the insurance companies don't cover it. Besides, I could grow my own, and higher quality if I needed it. I grew up in the '70's, for God's sake.

I have a new Dr. for pain lined up. We'll see what happens, but my Neurologist is really helping me out. I don't do well with NSAIDS and the Nabumetone (an anti-inflammatory) he had me try knocked me on my butt, but did relief the neck and migraine, but caused a rash, and made me feel extremely cold. It may be an initial reaction, in any case, it will be a last attempt if the Sumatriptan doesn't work, to try and stay out of the hospital, where they treat me very well by the way. (Danbury Hospital, Danbury, Ct.) They know me well there. I end up there around 5 to 6 times a year. They now give me a 75% break on all services, and so does every doctor in their network.
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