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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #1  
Old 11-15-2005, 02:28 PM
annapurna annapurna is offline
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As my lbp increases and I simultaneously become more and more reluctant to pursue any additional medical treatment (I've done it all, it seems), I'm starting to have a serious change of heart concerning medical treatment for my spine. Up to this point, I've assumed that medical treatment, be it restorative surgery or pain management was intended to allow me to "live my life" despite the fact that I have degenerative arthritis. Now I'm weighing the merits of living my life around my back instead. I mean, what is intrinsically wrong with simply "living on the couch"? My husband makes more than enough money to support me if I could no longer work, and I have no children or elderly relatives to take care of. I could still read my scriptures and good literature, pray, and maintain social contacts via the internet even if I were bed-ridden. True, I'd miss my job, the mountains, travel to see family, church, etc. if I were to get to that point, but I'm sure that, after awhile life on the couch would seem normal and I would not miss those things anymore.

I guess I'm posing this question more from a "moral-ethical" standpoint. Prior to this week, I've more or less assumed that I had a responsibility inasfar as I was financially and emotionally capable to pursue the highest level of physical capability I could in order to contribute to my family, community, church, society, etc. Now I'm questioning that premise. Can't I contribute somehow even if I never leave my home? If my husband or family had to help me care for myself and my home because I refused to consider any additional medical treatment, would that be somehow selfish?

I know that these seem like odd (if not useless) questions, but they have been factoring heavily in my own personal risk analysis and I never even realized it. Wonder if that is true for others as well?
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #2  
Old 11-15-2005, 03:04 PM
Mariaa Mariaa is offline
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Laura,
Allow me to give you my perspective as I took this path for awhile however, I still had my own income w/SSD and LTD which you probably will also if you decide there's need to medically retire..

3/2000~ I had to stop working as I had stayed on my feet for as long as I could and was spending more days down than up. At this point my last spine surgery was in '92 (failed back) and I had been offered a 3 level global fusion and had 2 2nd surgical opinions agreeing w/this.

I layed around mostly crying and feeling depressed as it was an effort to even get up and make myself something to eat or get to the bathroom.. I groaned and moaned nearly every time turning over and felt horrible about my surgical options..

My husband had to "tote" me about in my van or his SUV lying down whenever we went any distance as I couldn't sit for even 5 to 10 minutes because of tailbone pain and LBP...

Everytime family or friends came to visit my pain soared even more as I tried to rouse myself and be a hostess of sorts however, that usually failed and only alcohol could dull the pain I had set upon myself with increased activity as I was given no pain meds. I was on Neurontin since 1998 which had taken the edge off the neuropathic burning pain, but not the #8-10 lbp I lived w/daily.

Finally in 2001 my PCP who was a company doctor I was going to while working the last 5 years told me that she felt I "must" go to Pain Management.

I didn't want to as I was fearful of pain drugs and ESIs however I went and on the first visit I was given a script for Norco and told I had been horribly untreated over the last 9 years for my pain. The Norco made me sick and sleepy so I was put on MS Contin.

Wow!!! Talk about relief! I was able to get up and function so that was really encouraging. Since the MSContin worked so well I was advised to try ESIs which I did and the combination of the meds and the ESIs had me feeling normal in terms of lack of pain~ what a relief after all the years of crippling pain...

So on went the last 4 almost 5 years like this however, a rift between my spouse and I started to occur. Not so much because I couldn't do anything but because I was becoming more active and getting out more (still very limited). In fact, my husband always told me every time I had a painful flareup "see what you've done"~ Well, of course, however, it's been worth it most of the time as I've been in bed so much the past 10 plus years that whenever I could do anything outside and have some fun.. it was practically miraculous to me.

The couch life grows very old very fast and esp. at a young age even tho I was in my early to mid and late 40's and now into my early 50's.

This is just my own personal opinion. I know you've tried so very hard to find out what is wrong and how to fix it if you can so probably you are feeling somewhat defeated that there seems to be no sure or available remedy to correct your spinal situation...

There's nothing wrong with taking it easy as needed for pain, however, remember that bone density may very well be affected should you take up lying about on the couch/bed for a long period of time.

IMHO it's better to rry and utilize some pain medications to keep you active as you are able to be, and hopefully when the right technology is ready so will you be and your bone density won't be an issue and you'll still have some musculature/tone going on to help support your body.

I think if I role played and put my husband (or any member of my family or a good friend) in my spot, I know I would want him to do whatever it took to be as vital and active as he could without increasing his pain level. Regardng work, that is something that if the person can, Ok, if not, that's another thing.. I don't consider it selfish if it's a necessity.

As to whether you can contribute from your bed/home vs. being up and out and part of the community.. surely in some way you can, altho I nearly certain you will see your world grow much smaller and the # of people you have contact with dwindle also.. and I do think that we are a social species for the most part. I think that you would be limiting yourself to a great degree should you just decide to take residence on the bed or couch.. I think this because I've been there. However, as individuals, anything is possible~ tho I hope someone as young as you won't go there...
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Old 11-15-2005, 04:41 PM
annapurna annapurna is offline
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Mariaa,
I don't think that I could have gotten a better perspective on this issue than yours - thank you so much. Nothing like hearing the experience of someone who "was there" to give one some serious perspective.

I had not considered the social effects of simply accepting my back pain and not attempting to correct it or mitigate it with pain med's. I already live in a small, rural town with few friends and no family nearby. If I were to become a shut-in, I would probably be giving up most contact with anyone other than my husband.

I also forgot that bone density losses due to inactivity can be a one-way street - especially at our age. That's got some serious long term life consequences. If my husband needed my support down the road, I would, in effect be saying that I'm not willing to do what it takes to even have the possibility of being there for him.

On that basis, I guess there is some sort of obligation to do all we can do to at least not "burn bridges" healthwise since we don't know if/when our loved ones may need us in the future. Thanks for that perspective - I never would have thought of it that way. You've given me a clear answer to my question.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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Old 11-15-2005, 09:33 PM
ans ans is offline
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You also could make a serious contribution by retooling into biomedical engineering. Don't know if this could partially be done at home 'tho.

Good luck Laura. - Allan
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Severe, extensive DDD, considered inoperable by Dr. Regan, Lauressen, & some guy at UCLA. Severe foraminal stenosis (guess they can't operate!) and some spinal cord compression that Lauryssen would fix if gets outta hand.
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  #5  
Old 11-15-2005, 09:43 PM
sahuaro sahuaro is offline
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Annapurna: I think it's always helpful to question and rethink basic assumptions about life and our world. If there is a theme in both your posts, it seems to be a sense that one lives one life to meet obligations and burdens. If this is truly one of your basic assumptions, I would urge you to think about whether this needs to be the case--and to think about what it is that you want for yourself and whether it's okay (morally, ethically, emotionally, etc) to ask for and get your own needs met. Please take care of yourself--you sound like you are in alot of pain both physically and emotionally.
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2001 MVA; C5-C6 disk extruded
ongoing physical therapy, exercise and massage
ESI's, oral prednisone, trigger point injections
foraminal and central stenosis C5/C6 and c6/C7
2007 EMG/nerve conduction shows pattern of chronic radiculopathy
January, 2008: Prestige ST Artificial Disk Replacement, C5/6
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  #6  
Old 11-16-2005, 09:13 AM
Mariaa Mariaa is offline
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Laura,
If you can work from home perhaps you can incorporate a modified work station to meet your physical needs and still remain "hooked up" to your work world, maybe going in just once or twice a week? I was fortunate enough to do this the last few years of my employment~ working two days a week as a technical writer and two days a week as Advice Nurse/Triage. The Triage part killed me tho in the end with all the standing and multitasking phone/computer..

Anyway, there might be options for you that don't necessarily put you on the couch 24/7 unless you're in that much pain all the time.

If you are, I strongly encourage you to seek Pain Management assistance at least long enough to hold you at bay until newer spinal technology might meet your needs..

I'm really hoping the answer for permanent pain relief is very near for you, and meanwhile you'll make adaptations that allow you to rest yet stay healthy and function in an acceptable manner for your lifestyle~ good luck..Maria
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  #7  
Old 11-16-2005, 09:47 AM
annapurna annapurna is offline
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Thanks so much for the help. I'm beginning to realize that simply giving up on medical treatment for spine pain (including pain management)is really giving up on life. Simply circumscribing one's life to adapt to increasing pain and disability instead of using pain management and/or restorative spine treatments eventually leads to unacceptable levels of isolation and boredom. I had gotten to the point where I thought that my desire for better function and lower pain levels was just pride and an unwillingness to accept my own mortality. You're all reminding me that medicine is here to help us live as full a life as possible even within the confines of aging and mortality. Wanting to be healthy and active is NOT necessarily an emotionally unhealthy desire to be sixteen forever as I was thinking.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #8  
Old 11-16-2005, 10:40 AM
annapurna annapurna is offline
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As a second note, I am doubly glad for all of your help and perspective. Many friends in my local church and community have a VERY stoic attitude about pain and disability. They feels we were born into this world so that we could experience pain, suffering, and loss. Because of this belief, the concept of using pain management or restorative surgery is, in their opinion, somehow circumventing the "divine purpose" of life. Based on this belief, physical pain and disability are to be accepted and endured with cheerfulness, not corrected or aleviated through surgery or drugs. I should be quick to state that these ideas are NOT representative of my whole church, just many folks in my own little rural area. I guess that after spending seven years here I've unknowingly bought into that mentality. Thanks for the wake-up call.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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