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Thread: Quality of Life Issues

  1. #1
    Join Date
    Oct 2004
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    San Diego area
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    3

    Quality of Life Issues

    Hi all,

    I am new to this so please excuse any lapses in my Netiquette. And if you decide that I need some lashes with wet noodles, then please do so gently as I am in a lot of pain anyway !

    I should mention that I am male, and after reading through quite a number of threads on this very helpful site, I have seen very few responses/threads from males. I know that the incidence is about 7-1 females-males, so I’m not very surprised, but I do feel as if I have wandered into a ‘women-only’ group. This does not bother me at all but it seems worth commenting on.

    Basically I am faced with Hamlet’s problem : To Be (operated on) or Not To Be (operated on). I am very concerned about the Quality of Life issues with going in either direction.

    I am 52, and was first diagnosed with Soliosis at age 32 (curves around 18-20). I tried a variety of medical treatments over the years and when I found that nothing relieved the pain, I took the mind over matter approach (meditation is wonderful) and managed to live a very active, and relatively normal life, punctuated by painful episodes that occurred intermittently for the next 18-20 years.

    Over the past 2 years or so, however, the pain has increased dramatically, and I have tried various other new Pain Mgmt techniques, mainly Ablations, and other trigger point injections. After a particularly bad episode, I went to see an Orthopedist who after looking at my current X-Rays (42 and 40) advises surgery, sooner rather than later, as he indicates that it will only continue to deteriorate. I am in continuous pain, can’t sleep much (2-3 hours at most), and generally can’t get comfortable in any position – sitting, standing or lying down. Walking results in numbness in one leg. This surgeon has a very confident attitude and feels that he can definitely ‘significantly’ reduce my pain levels by doing the corrective (A/P) surgery. A second opinion confirms that whilst surgery can definitely stop the curve, this doctor states bluntly and directly, that he cannot guarantee that I will be pain free after the surgery, and he refers to the ‘Quality of Life’ issues.

    After hearing about how extensive this surgery is (one doctor told me that the surgery would age me 3 years immediately i.e. I would feel like 55 afterwards); how demanding it is of the patient both physically and physiologically (and psychologically, which was not mentioned); the long recovery period and all of the associated, not to mention all the possible complications, I am left with the decision to either go through this, with the possibility (probability ?) of being in less pain, and of course all the complications (lack of flexibility etc) that you all know and have written about, or trying to continue on as I have – in constant pain. In the American vernacular, ‘a rock and a hard place’ applies – the English would describe this as a “Hobson’s choice”.

    I do need to mention that my late father-in-law, an eminent Orthopaedic surgeon for nearly 50 years, had always advised me against any back surgery. I do come from a very medically-oriented family, and have often heard about the low success rate of back surgery. So this being my background, it is not difficult to understand my aversion to this surgery. However, my pain situation is so severe and my current ‘quality’ of life is so compromised that I feel that I must go through with as much research as possible to determine the best path for me.

    I have only recently started some extensive research and was very pleased to find and join this site. I would be very interested and grateful for any input that anyone has on this : similar experience, reading suggestions, or other suggestions that may be helpful. Thanks !!

    Sorry for such a long post but I did want to provide a clear picture.

    Neil

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    7,120
    Hi Neil....

    It's certainly a difficult decision. Only you can tell whether your pain is significant enough that the potential of getting rid of it outweighs the risks of surgery. In my own case, pain had started hacking away at my function. When I realized that I couldn't do some of the things that I really liked, I decided it was time for surgery.

    I can't tell you how many times I'd heard, even from medical professionals, to avoid surgery. I can tell you now (more than 12 years since my surgery), that although I'm sure people were trying to help me, their warnings only served to make surgery more of a stressful situation than it needed to be. It would be great if we could all avoid surgery, but that's not always the best thing to do.

    I have links to a bunch of abstracts from scoliosis studies on my website. They might be of some help to you:

    http://www.scoliosislinks.com/Outcomes.htm

    I can tell you that I know a LOT of people who have had scoliosis surgery. While some have certainly had bad outcomes, the majority have had good outcomes, and would wholeheartedly recommend surgery. Most have had significant reduction in their pain.

    Surgery at your age won't be a piece of cake. In the short term, I can almost guarantee that you'll wonder what you were thinking when you agreed to it. Hopefully, if you've picked the right surgeon, and you have realistic expectations, in the long term, you'll be thankful you took the plunge. Many people think that surgery is the be all & end all of scoliosis treatment. They're the ones who are often disappointed.

    While there certainly are a lot more females than males here, there are a few men. Joe O'Brien, who is the President of the National Scoliosis Foundation is one. Dave Wolpert, who wrote a great book (Scoliosis Surgery The Definitive Patient Reference) is another. They're not as active on this forum as some of us females, but they're here none the less, and had to make the same decision you're not considering. Best of luck with your search for knowledge. I'm sure you'll get it figured out eventually.

    Regards,
    Linda

  3. #3
    Join Date
    Sep 2003
    Location
    NJ
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    1,294

    Surgery for pain

    I had surgery 2 years ago at the age of 60 which was a redo of an older form of scoliosis surgery done when I was 14 in 1956. This is much more complicated than a primary scoliosis operation.

    Was it easy? No. But in my case it was a choice between difficulty breathing which would inexorably progress and progressing painful deformity. I was able to control the pain for a long time with Pilates exercises and walking but the time came when I just couldn't stop the progression of pain and breathlessness. I was grateful that, even at my age, an experienced, competent surgeon gave me my life back. Before surgery my curves were: 30 cervical, 80 thoracic, and 40 lumbar. Eight years before the surgery I was measured at 64 degrees thoracic;this is a 16 degree increase. I am now working, productive and my breathing improved so much that I was able to hike in the Alps last June at 6,000 feet. I am essentially pain free. I personally wished I had done it sooner but I didn't know I had the option.

    The decision for surgery is both personal and terrifying. One must be ready for it. I personally have no regrets.

    Karen

  4. #4
    Join Date
    Nov 2004
    Location
    England
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    35
    Like Neil,I am new to this forum.Quality of life issues are uppermost in my mind,too,and causing much mental anguish.
    I am 52(just!) and had AIS diagnosed at 13.I live in England. I have a 70 degree thoracic lumbar curve and fusion is likely from T8-L2.Pain is at a level I can cope with.Consultant says lower discs are a problem and may get worse -but may not!
    When asked what he hoped to achieve from surgery -he said 30 years better quality of life;and later added that each day that goes by back degenerates and there will be less correction.
    Balancing up the pros and cons is tortuous to say the least.
    A doctor friend of mine is discouraging surgery-"don't mend what's not broke",whilst my consultant says you don't want to end up in 20 years time regretting you didn't have surgery.
    Neil,like Linda I would recommend Dave Wolpert's book.
    Best wishes
    Jenny Spencer

  5. #5
    Join Date
    Nov 2004
    Location
    U.K.
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    137
    Like you both, I am new to the forum also.

    I was diagnosed with scoliosis at 12 years old after an operation for Spina Bifida at birth. By the time I stopped growing my double curve was roughly balanced both at 45 degrees.

    Over the years I've had quite a lot of pain and am now nearly 3" shorter than I was when I was 12. I get daily pain and am restricted in all sorts of things, particularly how far (and fast) I can walk. Oddly I seem to think this is all normal, even though I am getting worse. I'm a pretty positive person and so tend to just put up with things.

    A few years ago I noticed I was getting more and more lopsided and to cut a long story short discovered that my lumbar curve has now hit 60 degrees. I resisted the idea of surgery to start with but it all came back to quality of life. There is a chance that with surgery I could not only have a better life right now, but in the future I don't have get to get worse! It has to be worth doing - we all know how things tend to go a bit downhill as you get older anyway so I think we need to give ourselves the best chance we can of having a healthy and happy retirement.

    I have to think of all the potential benefits. It wouldn't be fair of me to my body if I didn't at least try to get it fixed, so I'm now on a waiting list for the op - it'll be a while though - I'm in the UK and the health service here likes to take its time!

    I hope my response is a help in your decision.

  6. #6
    Join Date
    Nov 2004
    Location
    England
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    Hi Pips,

    You don't say how old you are,so I'm not sure of the time scale of your degeneration.Could you fill me in?

    I'm also shorter than I used to be by almost 2"; and like you I put up with daily pain( but it's not chronic ).

    I understand how important it is to think of our physical well-being as part of our 'retirement package'.

    Where are you having your surgery ? I also live in the UK.

    What I worry about most is that surgery could make matters worse -so perhaps I'm not as positive as you are.

    I sometimes think I will have the surgery as I know I will only get worse ;and then I read something or someone says something and I change my mind.

    Looking forward to your reply as I haven't come across many UK people on this forum.

    Best wishes,

    Jenny


    Best wishes,

    Jenny

  7. #7
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    Nov 2004
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    U.K.
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    Hi Jenny

    My curve stopped progressing at about 18 years old and stayed pretty stable for 10 years. I am now 41 so its gone 15 degrees in 13 years. I think that's a fairly common rate.

    Two years ago I was really undecided because I was afraid of the outcome of surgery but most things I've read seem to indicate that being worse afterwards is a much smaller chance that being much better. Many people who post in forums do so because of complications, those who are complication free often just get on with their lives without posting to say how much better they are. I was in contact with someone a while ago who had the op and whose rod broke and even she said she was glad she'd had it done.

    I think sometimes we decline at a slow enough rate that we just put up with things but compare yourself to anyone else you know who is fit and healthy. I just don't want to ( as my GP said!) - look to a future of "increased pain and disability"

    BTW, I am in South Wales, where are you?

  8. #8
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255
    Hi Pips and Jenny,

    I'm also from South Wales (Rhondda Valley) but now I live in Philadelphia! There have been one or two posts from British people who have had surgery, you could probably search using the searchword "UK" - I think one of them was named Justin, and I'm not sure about the other one. They mentioned where they had the surgeries, etc.

    Pips, how long do you expect to wait before having the surgery? Where are you being treated?

    Thanks for the info! ~Laura

  9. #9
    Join Date
    Nov 2004
    Location
    England
    Posts
    35
    Hi Pips and Laura,

    Thanks for the info.I know it makes sense to have surgery sooner rather than later if a decline is inevitable.At the moment I'm still putting pieces of the jigsaw in place!

    How did you set about choosing your surgeon Pips ?Are you a member of SAUK?
    By the way I live in Devon.

    Best wishes
    Jenny

  10. #10
    Join Date
    Nov 2004
    Location
    U.K.
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    There is a specialist scoliosis clinic in Cardiff which I go to. I was referred there by a local orthopeadic surgeon who is really just a 'hip and knee' man, who I went to see about pain.

    I did contact SAUK to ask for a recommendation and they recommended the same clinic (although I'm not a member of SAUK). You seem to see someone different every time you go to the clinic but they seem very good. Surgery would be done at another hospital in Cardiff and they are hoping to do it sometime next year. The waiting list is about 12 months after the decision is made (which was July this year). I have some complications though with cord tethering and split cord malformation so have to see a neurosurgeon first which may delay things a bit. I'm waiting for an appointment to see him at the moment - if you're interested, I'll keep you posted.

    Jenny, its a lot to get your head round, isn't it? I've struggled with this for about 3 years ! What degrees were you when you were discharged as a child from scolio clinic?

    Pips

  11. #11
    Join Date
    Nov 2004
    Location
    England
    Posts
    35
    Hi Pips,

    You ask what degrees I was when I was discharged from scolio clinic when I was a child.

    I was referred to see a surgeon when I was 12/13.After the consultation I never returned as my father was against intervention.So I have no idea what my curves measured.In fact apart from a RTA in 2000 when X rays were taken ,I only have two sets of scoliosis Xrays for comparison from 2003 and 2004.

    In reality my scoliosis was never monitored until recently when problems started.

    I have been wondering whether the hospital I went to as a child has kept my X rays .It would be very interesting to see them and find out what my curves measured.

    I wonder what policy hospitals have for keeping Xrays.My Xrays if they still exist would be nearly 40 years old.

    Thanks for your interest and support.

    Best wishes,

    Jenny

  12. #12
    Join Date
    Oct 2004
    Location
    Seattle, WA
    Posts
    8

    Quality of Life Issues

    Hi. My first post was to the non-surgical forum a couple weeks ago. I've since had debilitating pain in my right hip (missed a couple weeks of work but am returning tomorrow) and learned that I have stenosis and arthritis along with scoliosis. My degrees are upper thoracic 23, lower thoracic 57, lower lumbar 80, and pelvic tilt of L3 38. I'm 43. I'm seeing one specialist (Dr. Krengel) who has me on medication and corsett brace to manage pain until I say, "uncle!" I'll be getting a second opinion 2/1/05 from another specialist (Dr. Wagner). I understand that both are highly respected and Dr. Wagner has more experience. Is anyone in this forum familiar with either?

    I've noticed a few other members in this forum that are similar to my age and condition and look forward to learning from and sharing with you as well as others.


    Kurt
    Last edited by Kurt; 12-09-2004 at 10:11 PM.
    as of 9/04:
    upper thoracic 23
    lower thoracic 57
    lower lumbar 80
    pelvic tilt of L3 38

  13. #13
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,120
    Hi Kurt...

    There's another mention of Dr. Wagner here:

    http://www.scoliosis.org/forum/showt...ghlight=wagner

    --Linda

  14. #14
    Join Date
    Aug 2004
    Location
    Arizona
    Posts
    64

    quality of life?

    Hi Neil,
    Your story is so familiar to me. I am a little older than you, 57 yrs. old and I deliberated, to have (or) not to have surgery, it was an agonizing decision. I also tried every possible alternative from epidural injections to acupuncture and meditation as well, with only temporary relief at best. By last summer I had deteriorated to 2 hours a day that I could function in any postitive fashion. I would literally fall to the ground unable to walk several times a week. Simply putting a meal together or going to the supermarket literally wiped me out (exhausted from pain). It became obvious that without surgery I was not going to get better, at least with surgery I had a chance at some quality of life. I researched surgeons carefully and am pleased with my selection. ( Dr. Robert Dzioba in Tucson, Arizona). He was not listed on the scoliosis surgical site but I spoke to former patients and other doctors in the region who highly recommended him and through my own research found his credentials to be excellent. I finally made the call and had myself scheduled for a surgery date. I am relatively early in my recovery, ( 5 weeks) and I often get frustrated with the limited mobility, (not a very patient patient) but already the terrible pain in my feet and legs is gone, which is huge in the overall scheme of things. As you will read often in the forum the first 3 weeks were really tough but it has been mostly 2 steps forward and only frequently 1 step back. One of best things I have done for myself is to work hard at keeping a positive attitude, (not always easy). Meditation is good therapy for the mind. I wish you good luck and peace with your decision. I am glad I did it and its still very early in the game. I knew there were no guarantees, but I certainly didn't have any quality of life without the surgery, so it was a choice between a known and unknown. Again ~ good luck.
    Gayle

  15. #15
    Join Date
    Oct 2004
    Location
    Caesarea, Israel
    Posts
    72

    Neighbors!

    How funny! Kurt - I e-mailed you about 1/2 hour ago to say hi because I noticed Dr. Wagner's name and our geographical proximity :-)
    Age: 30
    Pre-surgery: upper curve 44 (and kyphosis), lower curve 45
    Post-surgery: under 20, both curves (doesn't even qualify as scoliosis anymore )

    surgery: August 29, 2005
    fusion T5-L3
    Surgeon - Dr. Ted Wagner at University of Washington (Seattle)

    Scar getting to the point where people either don't notice it or think it is from something much less serious!

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