NeuroTalk Support Groups - How many people had multiple back surgeries?

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- Spinal Disorders & Back Pain (https://www.neurotalk.org/spinal-disorders-and-back-pain/)

- - How many people had multiple back surgeries? (https://www.neurotalk.org/spinal-disorders-and-back-pain/166925-people-multiple-surgeries.html)

I agree wholeheartedly with Dr. Smith -- but I DO think that ONCE IN AWHILE, we'd like a little something like "I know how much pain you're in" or "I'm sorry you're hurting so much today." Just some validation. We NEVER get it from the doctors. Many of us never did! :mad:

I guess hearing it from our families would mean alot. I know it would to me.

Hugs, Lee

You and your comments are appreciated. I also have this pain issue, and sometimes I have to "ouch" loudly. It doesn't matter where I am at, it hurts! My family around me just ignors it, or someone comments I just like to be vocal. NOOOOOOOOO. it hurts! Try hitting your thumb with a hammer, and just quietly saying ouch, Most of us would be jumping up and down cussing! I am glad we have this site where we can be understood with this kind of pain. I have great empathy for all of us who hurt. ginnie

Quote:

Originally Posted by Leesa (Post 866675)

Just some validation. We NEVER get it from the doctors. Many of us never did!

Quote:

You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.
http://distractible.org/?p=3912

Maybe it has to do with apprehension of being asked for (more) pain medication, and all the ethical/political baggage that goes along with that (instead of just allowing doctors to be doctors)?

I hear you, Lee, and of course I'm only guessing/speculating - trying to see it from both sides. I've had doctors like those you describe, who just see us as their 10:15 or whatever... But I have gotten comments from others indicating they believe me, and their willingness to put that in writing. And my PCP does say, "Oh... sorry." or (albeit brief) words to effect when he asks how I am and I answer candidly, so there must be a factor of individual personality involved as well. Perhaps they view it as keeping things "professional", which definition is bound to differ between them and us(?)

Doc

Quote:

Originally Posted by ginnie (Post 866688)

I also have this pain issue, and sometimes I have to "ouch" loudly. It doesn't matter where I am at, it hurts! My family around me just ignors it, or someone comments I just like to be vocal.

This happened to me just the other day. I must have made some sort of display in front of some visiting friends, because I heard my DW make the excuse, "Don't mind Doc, he just has to make his noise."

This bothered me a bit at first, but in thinking back (and trying to examine the POVs of her and our guests) I must have (without realizing) said/done something that put our friends ill at ease. DW wasn't dismissing me; I KNOW she understands. And she was right. She was just trying to salvage the situation. There's no way I would have wanted to make anyone so uncomfortable as to want to leave, or no longer want to be around me. I've been through that phase of alienating people - it stinks. :mad:

I'm not trying to say that's what happened in Ginnie's case - that's just what happened here. Coping with all the stuff we have to is as complex and different for each of us as our individual conditions/injuries are. My hope/intent is that sharing these experiences help us learn more about ourselves, people in general, and (better/different?) ways of coping...

Doc

Quote:

Originally Posted by Dr. Smith (Post 866600)

Hi Linda,

I know where you're coming from, but please don't sell them, or yourself, short. The people you love, and who love you most, have the greatest capacity for understanding & compassion.

If it's the descriptive language that's difficult to put into words, try googling: describe pain. There you'll find words and language to help describe it to both doctors and loved ones.

If it's a matter of comprehension, everyone has had incidents of pain in their lives, both physical and emotional. Think about those times and try to analogize. "Remember that time when ______. Remember the pain and emotions you felt? How bad it hurt and no-one else could understand? Now imagine feeling (like) that every day of your life. Well... that's how I feel, Sweetheart."

That's blunt and oversimplified, but I think you get the idea. Analogizing - putting things into terms people can understand and relate to from their own experiences - is often a powerful learning/teaching tool.

I think it's also important to be aware that our loved ones often seem to behave as if they're ignoring or forgetting about our pain. If they seem to be ignoring it, it may be because they don't want to be the reminders; they don't want to make you feel bad/worse by bringing things up. They may also be trying to distract you from thinking about it because distraction is a legitimate and effective way of coping with chronic pain. If it seems that they forget how much pain you're in, that may be a good thing too. That may mean you're doing a good job of coping, and putting those around you at ease rather than uncomfortable and on edge. Though we may be victims, I think it's best that we don't play the part of victims - that we don't accept that role (but from what I've read, I think you already know that. ;) ).

I hope we can talk more about this,

Doc

I do realize that my family are my biggest cheerleaders when it comes to me overcoming this battle that I deal with. And my children do a wonderful job of trying to distract my pain with my grandchildren. They are wonderful. I guess you just sometimes feel that people get tired of hearing that you hurt or if they even believe you. I do not feel as I am a victim at all and hope I didnt come across as that. I feel like I do an excellent job coping with what I deal with. Alot of people would be so out of it on meds that they could not function at all and I choose not to do that because I want some quality of life. I have learned to deal with the pain. I let go when I am alone, I don;t like for anyone to see what it does to me. They tell me how strong I am, when if they only knew.
Thank you for your words. It is so nice to come hear and [be heard.
[/B]

Quote:

Originally Posted by Dr. Smith (Post 867017)

I can't say for sure, but I wonder if that may be partly their training; there are a lot of things they don't seem to acknowlege besides pain.

It may go back to something in that Dr. Rob's blog post:

Maybe it has to do with apprehension of being asked for (more) pain medication, and all the ethical/political baggage that goes along with that (instead of just allowing doctors to be doctors)?

I hear you, Lee, and of course I'm only guessing/speculating - trying to see it from both sides. I've had doctors like those you describe, who just see us as their 10:15 or whatever... But I have gotten comments from others indicating they believe me, and their willingness to put that in writing. And my PCP does say, "Oh... sorry." or (albeit brief) words to effect when he asks how I am and I answer candidly, so there must be a factor of individual personality involved as well. Perhaps they view it as keeping things "professional", which definition is bound to differ between them and us(?)

Doc

This has been my experience with my pain doctor of 11 years. He is pretty quiet now and doesn't make good eye contact anymore. The degeneration and pain are much worse now. The mulitple surgeries were needed for stabiliation of the spine but increased the pain considerably. He has been a doll and arranged for a pain doc to manage me post op. as he doesn't trust surgeons to do a good job in that area. He never minded going toe to toe with the out of town super spinal surgeons relative to my post op care and fought for a week to ten days of inpatient rehab before allowing me to go home where I live alone. The traditional treatments never helped the Fibro and other autoimmune problems. He was always interested in the non tradtional routes I took and used them on other patients. As the spine has continued to go downhill, Medicaid now refuses to cover any physical therapy as I am considered a bad investment. He couldn't look me straight in the eye when he told me I now have multiple autonomic disorders that don't respond well to treatment. I don't think I would want his job. Best wishes.

Relax and breath

Quote:

Originally Posted by just not right (Post 863080)

I had L4-S1 fusion when i was 37. Im just wondering how many people did more then 1 back surgery. What kind of job did you have? Did that job make put more stress on your back? Right know im on Long term disablity just had hip arthroscopic surgery on 2/17. When i heal and recover i will go back to work, but my job terminated me october 2012 because i was on LTD for a year. I was a communication installer pretty physical job. Im just wondering if a should find job less physical job so my back surgery doesnt give out. I really dont want to have another back surgery. What jobs did you do and was it to much on your back? I dont think i can sit in office doing work. I would go nuts. So whats a good job for me to do?

Sorry you are so worried.

Having one surgery does not always mean you will have more surgeries.

I have had 3 and am having one more on the 17th. But my back and c-spine were all bad due to an accident.

Two were on my lower back (one fusion was rejected and had to be redone)

The other was my cervical surgery. Now I have to have more of the surgery done there.

It is important to know/understand that it was noted that I needed surgery in 1994 and no one did it until 2002. It was almost too late. A car accident would have snapped my neck.

MY UNCLE, on the other hand, was walking bent over and had one surgery and never had to have another and it's been over 25 years.

It depends on the person/ their health/their outlook/ their general overall support system. It really does matter if you have support of people and/or family (even if they are not your biological family) and can be calm over things. Stress makes pain worse.

I hope that helps.

Malinda:grouphug:

Quote:

Originally Posted by just not right (Post 863080)

So whats a good job for me to do?

There's a movie out on cable/DVD - The Social Network - a biopic about Mark Zuckerberg, Harvard dropout and co-creator of Facebook (and one of the world's youngest billionaires.)

The single line in the movie that impressed me most was, "Harvard undergraduates believe that inventing a job is better than finding a job."

Harvard - schmarvard, I think it's a great philosophy/aspiration for anyone from anywhere! :D

Whoever said it, they were right - "Youth is wasted on the young!" - attributed to George Bernard Shaw, Mark Twain, Oscar Wilde, and probly some others...

Doc

Hello just not right

Do you have a passion in your life that you love to do? Sometimes that can indeed, lead to your own business. What are your interests? ginnie

Quote:

Originally Posted by ginnie (Post 868896)

Do you have a passion in your life that you love to do? Sometimes that can indeed, lead to your own business. What are your interests? ginnie

My interests are cars and houses. I been reading books about flipping houses. Was told today i was approved for ss disablity. Due to all my injuries. The thing is a cant stay on it forever cause i miss going to work and doing things. Being stuck home is no fun at all.