[dougp]

I appreciate finding this site. As you can see by the title of this 1st post, I have a constant struggle with negativity.

I am a 59 year old mail and have been on SSDI for a bit over 6 months. I have an officially failed 3-level cervical fusion, as the very competent and seemingly without any compassion neurosurgeon told my wife and I about two years ago. I had the original fusion from an injury I received while moving furniture. I was having a lot of shoulder, arm, and hand pain and within a couple of weeks post fusion, the pain was the same or worse and my stamina and physical abilities were severly curtailed. I went to a pain management physician who ended up having me on 150 mcg. of fentanyl every 48 hours, as well as 90 mg. of methadone for breakthru pain. In December of 2005 I had a spinal cord stimulator implanted by a neurosurgeon who does the surgery with the pain mgt doc generally present to assist with the placement of leads, etc. The scs was a seeming miracle, and within a week or two (after post surgery discomfort went away) I was free of 90 percent of my pain, started dropping pain med levels as rapidly as permitted, stopped my applic process for SSDI, dropped a credit card insurance policy we had paid on unwittingly for 5 years which would have paid off our $7,000 in credit card debt if I became disabled, and was exultant-as was my dear wife of 34 years. 29 days later, like someone flipped a switch, the stimulator stopped working. This had never been mentioned to me as a possibility, but I found out later that it is more like a probability. I am now on my 4th scs and it is in the process of failing. Back on very high dosages of opiates, have serious nerve damage in my feet, and 6 weeks ago had a TIA (am from a genetically blessed family and virtually no stroke or heart stuff along with mid-90's life spans. At time of TIA the ER docs did a cat scan, later on a doppler was done on my carotids which showed nothing remarkable, but because the quality of the doppler was a bit low, they did a CTA on me and found one carotid 100 percent blocked, the other between 70-80 percent blocked, and not from artherosclerosis, but as the result of early childhood trauma (?). I am now seeing docs in Chicago at Northwestern Medical School, and am getting assessments of the carotids won't mean anything to my lifespan, which I find very difficult to buy, to I am at risk an moment for a massive if not fatal stroke. On the 25th, I am having an angiogram under general anesthetic, and then I am told decisions will be made on suggested care-repair.

At any rate, I have met so many brilliant people with such narrow, focused perspectives that it blows my mind--there's an expression which shows my age, and I want to live for a bunch of reasons, but I also do not want to live in constant pain and as a life-draining anchor for my wife and to a lesser extent for my children. I have been in AA for 17 years this August, and as any of you folks who are "friends of Bill" are well aware, a drunk cannot afford resentments or long flights of anger. I pray, and many others pray for me, and have not had any relapse so far, but I sure would like a joint and a beer right now!

Enough for now--time for bed and the two to three hours it normally takes to get to sleep. I hope this has been somewhat coherent. I used to be a pretty decent writer, but that is now not the case, and I have gone from being a book a week reader to not having finished a magazine article in two years. poor me, poor me--

God's grace to all of you-thanks for listening.

[Doody]

Hi Doug and welcome to NeuroTalk.

That was a brilliantly written post and so I don't think you've lost your touch!

You've been through a lot. It drives me nuts when doctors exclude information you should have, such as the scs needing to be redone.

And, that's distressing that the doppler showed nothing significant on your carotids but a scan did.



I had an ultrasound on my carotids last year and they said nothing significant...I often wonder about that as my father has had 15 angioplasties, not just his heart, but his carotids and kidneys as well.

You'll find a great group of people here if you give it a chance. I've made several close friends over the years and have met many in person.

It sounds like you should go visit our Spinal Disorders forum that is here. http://neurotalk.psychcentral.com/forumdisplay.php?f=22

We also have a Social Security Disability forum that you may or may not want to visit for information. http://neurotalk.psychcentral.com/forumdisplay.php?f=28

You can just visit us all over the board! Here is a link to the main index page so you can check out all the different forums for yourself. http://neurotalk.psychcentral.com/index.php

Hang in there and again welcome.

[AfterMyNap]

Hi, Doug!

Welcome to NeuroTalk!

Your discomfort sounds maddening and I'm sorry for that. NeuroTalk has many forums that may address some of your issues. Please look around and feel free to join in anywhere.

Here's a link to the Chronic Pain forum where you might find some pain management tips, Rx suggestions, or other useful information.

http://neurotalk.psychcentral.com/forumdisplay.php?f=10

[DM]

Hello Doug and Welcome! WOW, you have been on some ride. So sorry you are having so much pain. I agree w/Doody; your writing is right "up there".

I see she has provided some links to forums that may be of great help to you, so I'll just say that I'm glad you found us and that I hope things turn around for you...take care.

[(Broken Wings)]

It's a heartbreaking experience you've had. I too have very little confidence in the medical profession as a whole, but I did not have surgery. My 6th sense tells me the secondary consequences may be worse than the present level of discomfort. discomfort is a nice word. Hell would have fit better. Medications do help but again, in the longrun, they'll hurt you also.

As for AA, if you're able, maybe get back with your group. Alcohol and smoking is a negative for your conditions. I encourage you to stay strong for yourself and your family.

I've come to realize one thing about pain, I can't run away from my body. it's with me wherever and whatever I do. There are many others who have suffered much more than I have, but I dont believe I'll suffer anything any worse or as long with thoracic outlet compression, herniated and bulges, scalene involvement. I have gotten some relief over the years, but it has been like going to 10 medical visits and finding one morsel.

I have an uncle who is a medical marvel. he's has the pain pumps, methadone, Xanaxes, Lorcets and many others. they help him a lot. He's had surgery after surgery, double amputee, diabetes, 4 or 5 open heart surgeries, fingers removed, less than 15% of his heart function left. He, with the help of his family, still tends and raises cattle. He won Cattleman of the year. He's very proud of his trophy and his cows. I could go on and on with his courage. so if you think you still can't do things, you're right, basically, but with the help of God, family and friends you may do some better on down the road and find something you can get involved with, just not the way you were.

I've also found pain patterns do change. so give it lots of time.


(Broken Wings)

[Idealist]

It really is nice to meet you. Boy, it sounds like you've been on a roller-coaster ride the past several years. But I didn't have any problems in understanding what you wrote. I just wish I knew more about your medical conditions so I could be more help. A lot of us live in our own little hell here, and everything that everyone else has said is true. I really do hope that you find some relief and get some competent medical care. I also hope that you aren't too tempted by the thought of escape, through alcohol or any other means. Good luck to you, Doug, and may God bless you.

Idealist