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What is it that you want???

dilaurodilauro ConnecticutPosts: 9,842
edited 07/12/2012 - 7:43 AM in Depression and Coping
There is a distinct line between those members who have been dealing with chronic pain for 10 years or more. I think those are the ones that have their situation some what in control.

What is more complex is those members who have just recently started dealing with spinal issues and chronic pain.

What I would like to ask , is what is it that you really want??

- Is it a pain free condition?
- Perhaps your partner understanding your situation
- How to return or still be productive in your work environment
- Dealing with some of the things you can not do any more.
- etc

I know for some of you, you really want that one MAGIC PILL that will take away all of your pain and discomfort.
I wish that was something like that

What I would really like to know is What is most important for you, right now
Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • interesting question Dilauro,

    i have been coping with chronic pain for many years, (but not online) which didnt stop me from going into panic over my recent op and diagnosis. while i am recovering from both the op and the shock of needing the op i having been wanting different things at different times from this site.

    at the beginning i wanted hints and tips on things like 'what to ask' 'what i need' and what to expect. i also wanted reasurance that there was life post op!

    post op i wanted to read about people who had been through the same thing as me, who i felt i could say it how it is and they will understand what i mean in my posts. i also wanted to give back to the site for the help i recieve here.

    whilst a pain free condition is not possible, to have somewhere to go to have a moan, or a laugh about the absurdness of our lives is a fantastic help to me.

    you seem to be suggesting that those new to chronic pain are less able to cope with it than seasoned veterens? isnt that to be expected? but surely sometimes even those who have had decades of chronic pain go through more vulnerable times emotionally, and needs change accordingly?

    i hope that today has been a good day for you, TinaAnn

  • I wanted my wife to understand that it wasn't just old age, it wasn't until I went over my scans with her that she finally understood that what I was feeling wasn't just normal ageing process,

    and now I want to know where to go from here and how to get there, maybe through my nuro we can decide
  • I've been suffering for over 6 years at this point. What I would like the most is to be able to get from where I am now to a place where I can understand why so many of us have to suffer. With all the improvements in modern medicine, there has to be a better place where suffering is just a place we used to be at and finally got past.

    I've read so many posts on here, trying to understand, trying to make sense of why so many good people have to live in such pain. so I guess my one want is understanding. There seems to be a theme here, understanding or to be understood. Chronic pain may be the hardest thing to understand. I've been working on it for 6 years and I'm not even close.
  • The ultimate desire would be to be pain free. No questions asked.

    But being realistic after 4 back surgeries, 2 of them fusions.....

    Just to be able to function normally so i can take my kids places like the zoo, or disneyworld and not worry about how long i can last, or how many days before i end up in bed for a week.

    doesn't seem like too much to ask, does it? (and as a side note, i'm only 40, and have dealt with my back problems for the past 2.5 years.)
    Microdisectomy / hemi-laminectomy 6/2010 and revision 10/2010
    Cervical fusion C4-5 and C5-6 9/2011
    Lumbar Fusion L5-S1 6/2012
  • went to see my nuro yesterday, and have almost decided to have the surgery, but told him I wanted a second opinion, so he said that was a good Idea, so he is trying to set me up at ucsf, we will see if comp will approve it, I will call him next week if I don't here anything from him, I also talked to the claims adjuster and told her what he was trying to do, so she said she would get a hold of his office
  • I want the strength to open up about my chronic pain. I tend to keep it hidden or downplay it for the most part because Im emberassed that I cant function like I used too. This has led to social withdrawal somewhat because I just cant bring myself to admit how bad my condition is to some of my friends/aquaintances. I have a few close friends that know everything about my problem but its only b/c Im very comfortable with them.

    Also id really like a girlfriend who would understand my pain and accept me anyway. I dont want to be a burden to anyone or hold anyone back, so it makes me not pursue women as much b/c I know I cant be the best for them. I have girls who pursue me occasionally but I usually send them off b/c of my condition.
  • moeck01mmoeck01 Posts: 29
    edited 08/04/2012 - 3:14 AM
    I have been living with chronic pain probably close to 40 years. My cartlidge breaks down, like DDD, except in other parts of my body as well due to an inflammatory genetic problem. I was diagnosed at 17 and had my first joint surgery at 24. (My daughter had her first and so far only joint surgery at 17, she's 26 now). So far I've had six joints worked on as well as three spinal fusions done.
    Up until the first spinal disks started to give issues I was able to lead a fairly normal life. Worked fulltime, rode horses, ran with my dog in agility, raise two children. My pain was handled with motrin and lyrica. (at somepoint fibromyalgia was added to my diagnosis as well)
    Now that my spine has become affected all that has changed. The pain levels have increased. i can no longer take lyrica due to side effects, cymbalta raises my blood pressure, tramadol makes me nauseous. My mobility has decreased. Last summer my grilfriend actually found and bought my daughter's old pony from when she was twelve. I wanted to get on him and could barley swing my leg up high enough to get on.
    So as my title says.I want my pre spine life back because the life i have now makes my first 30 years of pain seem like a walk in the park.
  • I'm off work right now on disability awaiting surgery in just 10 more days. What I'd really like is to do is to bring my pain down to tolerable levels even after being up and around for a full day. Wanting to be totally painfree is out of the question and quite unrealistic given my situation. I try not to set unrealistic goals for myself.
    Disability retirement
  • I want to be able to move on with my life. I've spent the last couple years just living for my back problem and not myself. Here just in last 7 months my back has my husband's and I lives on hold. I know I go to the NS on Wednesday to see if I need another fusion. I've had two fusions since February. I can't believe this is happening to me I am only 32. I often wonder what I did to deserve this.
    Discectomies 05/08 and 04/11, fusions L4-5 Feb 9,2012 and L3-L4 June 28,2012, Staph infection washout 3/2/2012, Bulged L5-S1. SCS trial on January 17th, 2014, which was a success! Permanent SCS on February 20th.
  • In a perfect world, to live life without pain and be able to perform like those in their 20s like me who aren't in this position. But it isn't a perfect world, so realistically, I'd like to get to a place where I could manage my pain at a tolerable level. If I could keep it stabalized around a 4 I'd be happy. Managed pain so I can get back to not having to worry so much about what I'm doing being too much to make me miserable later. To just be free to go through life in some discomfort but work and socialize as best as I can. I've come to terms with there being no permanent easy solution, so I just dream of one that can at least get me to a point where I can live day to day life, in pain...but a milder pain that I can work through. :)
  • nelnnel Posts: 402
    edited 08/06/2012 - 7:53 AM
    I wish I could accept the "new me" and be able to be happy with the amount of stuff I can do. I guess that means that I want to accept my position. But I keep fighting that because it feels like giving in! So, really, I don't know!
  • MrGrouchMMrGrouch Posts: 108
    edited 08/06/2012 - 8:31 PM
    Frustration, trying to understand what it going on, dealing with the social implications with freinds, family and work. We are all in uncharted waters with no compass just trying to find which way to go.
  • The title of this topic brings me back to the end of an appointment I had for a second opinion for spine surgery, the doctor asked me the very same thing word for word, any ways what it is I want is to be able to stand or walk for more than 15 minutes before the numbness stops me in my tracks most of the time, the pain I can deal with, with or without the meds but the meds do nothing for me when it comes to the numbness. It’s shocking just how much of life I miss out on not being able to stand or walk for any length of time, there is one thing I don’t mind missing out on when it comes to having any kind of normal life and that is waiting in lines, long or short.

  • dilaurodilauro ConnecticutPosts: 9,842
    kev_b, like you the pain medications are there, ok they do what they have to do, thats it, nothing more, nothing less.
    What I have felt to be the biggest problem is the nerve problems, the pain and numbness associated with it. I went to bed about 90 minutes ago, but my legs just started to get numb and my hops started on fire... So, off to the recliner and the computer.
    There are ways to deal with all this numbness... The Nerve medications, the exercises, and what does really help (at least for me) is Aqua therapy...
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • If I could pick ANYthing, I would want to go back in time and have that kid pay attention and realize that everyone was stopped at the red light, so he wouldn't have hit me...but I know that's impossible. :(

    Realistically, I want my surgery on the 27th to be a success, for recovery to be as painless and quick as possible, and to be able to have my life back. I miss me.

    I used to be very active...working out at the gym, going on field trips with the kids, going to Disney, Sea World, etc...(we live in FL). I want to be able to go shopping without worrying how long the lines are at check-out, and if I'll be able to stand that long after hobbling through the store first.

    I want everyone here to find their success also, and be as pain-free as possible. What a wonderful group I've found! It sucks that we're all pretty much in the same boat, (the Titanic? LOL), but good that we have each other. You guys are the only ones who truly understand the pain, fear, frustration, etc....

    Oh, and lastly, I want a HUGE settlement from his insurance company when this is all said and done!!!! :grin:" alt=":grin:" height="20" />
  • To be care free again
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • To be Great!

    I wish to do something that will affect the world, for the better. I want to be remembered despite my condition.
    Many have in the past and present: Tamerlame, FDR, JFK, Stephen Hawkins.

    I am still young and I want to be able to achieve my full potential(even if that potential has changed) regardless of my pain and disabilities
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