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indecisiveness from fear

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:30 AM in Back Surgery and Neck Surgery
Hi all
I am due to have an anterior spinal fusion at L5 S1 on 19th May in the UK.
However, because of everything I have read and heard I am seriously thinking of withdrawing from the surgery. I am constantly uncomfortable because of aches/numbness/ throbbing pain throughout my body from the waist down, however, the fact that I can still walk a mile without painkillers (most days)means that I am thinking of trying to live without surgery. My life is going to be restricted and it is likely I will probably end up losing my job (because I can't sit for more than 5-10mins), but at least I can still walk a mile at the moment. From what I have read about people's experience of the fusions, I may not be able to do this in the future.
Does anybody have any experience of going against medical advice for a back problem and not living to regret it?
I only know one person who ignored the surgeon's advice and she ended up temporarily paralysed,but thankfully emergency surgery got her walking again.
This is such a difficult decision to make and I want to make sure that I make the best decision and not end of worse than I already am


  • What are the problems you have that are causing the need for fusion? Where is the majority of your pain? What relieves it? How long have you had it?
  • Hi Gwennie

    I have had back problems for over 20 years, but it came and went up until Nov 2007, so I lived with it. I have had about five herniations at L5 S1 over those 20 years, but just carried on and they mended themselves. In Nov 2007, I had a severe herniation and couldn't walk for some time. This mended itself, but they then found that my disc is almost completely degenerated. I have had constant pain/numbness etc since Nov 2007, although it began to get worse towards the end of 2008. I couldn't walk at all for most of Feb 09 and have been doing physio constantly since that time. Because of the instability in my back, my pain isn't in anyone place all of the time. At present, I am getting pins and needles in both feet, shooting pains in my groin, numbness in my legs (sometimes numbness is from the waiste down if I am in bed too long). My back, pelvic and legs ache and my bottom feels like someone is stabbing it when I walk. Sometimes I may only get severe back pain, other times I may only get pins and needles in my feet.
    There doesn't seem to be any rhyme or reason as to where the pain will be next, except sitting which is always uncomfortable. My upper back area is also starting to get aches now as well and as far as I know, there wasn't any problem with the discs there at the last MRI scan. I had the discogram in Feb which showed the extent of the deterioration and this is what the surgery is based on, alongside my quality of life.
    However, as I mentioned I can walk a mile (with rests every so often) and I rarely go on painkillers, preferring to not damage it anymore by doing things I shouldn't because I can't feel the pain.
    I have seen some posts on the forum where people say don't have the surgery unless you are disabled. Well I am disabled compared to how my life used to be, but I can still walk around my house and make myself a cup of tea. Such a difficult decision. I have been told that I can't fly or go to far away from home and I certainly can't lift much.
    I am attempting to return to work tomorrow (office work) in the vain hope that it willhelp me to make my decision. If I can't sit for any time to do my job then I am going to have to think about as I don't want to be out of work for the rest of my life.
  • dilaurodilauro ConnecticutPosts: 9,868
    how much pain you are in from a day to day basis and IF the disc that is herniated is hitting a nerve root. When that does happen, you would more than likely start to experience sciatica. If the spinal nerve is not impaired, that it is possible that non-surgical actions could help resolve the problem.
    If the doctors are saying, Surgery is the Answer and you are unsure of (who isnt), then ask the doctor WHY
    You want to know the Pros and Cons of having or not having surgery. Also, I would try to get a second opinion. Spinal Surgery is something that you never want to rush into.
    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
  • Is it possible to get a second opinion where you live?

    I had sciatic pain for over three years before I finally made the decision to have surgery. My world had become so small. I could not stand for more than a minute and I was driving to get my mail at the end of my driveway. But I too would read things on various forums and think "I'm not as bad off as these people," and then I'd try to tough it out a bit longer. When I finally determined that I was in fact getting worse rather than better, and that there were no new developments on the tech. horizon that could help me, I made the decision to proceed. It sounds like you are at this point, too.

    It is important to do your homework to know you have exhausted your other options, and to trust that you will be in good hands with your surgeon. The thought of surgery is always a angst producing situation....But you don't want to wait so long that the nerve is permanently damaged.

    It is a big decision. I wish you luck in making it.

    xx Gwennie
  • Hi dilauro

    I am in pain everyday, but the amount varies throughout any 24 hour period. As I haven't been told my full diagnosis and only gathered from the scraps of info I have been given to date, I have severe DDD, but no herniation at present. This is the second opinion that I have had on my condition and it is in part to provide pain relief and to stabilise it. I am seeing the surgeon again on Wednesday in abid to get more information about my condition and what may or may not happen if I chose not to have the fusion.

    I have been having a lot of physio and hydrotherapy for three months, but no real change in my condition to date.

    I have just found out about axialif and would like to look into this as it is my L5 S1, but feel I have pretty much been put off surgery.
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