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S1/L5 Midlf Spinal Fusion - What should I do??

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nik890
nik890

Hi, I am booked in for a spinal fusion in the S1/L5 lumbar region on 6th Nov.  I have pre op this Friday and need to decide what to do by Wednesday in case I want to cancel.  I had a severe prolapsed disc just over a year ago and it was agonising, back spasms, sciatica and severe pain for about 8 weeks.  I was diagnosed with a prolapsed disc and degenerative disc disease.  At the time I was offered a steroid injection but I turned it down as the pain was decreasing by that point and was maneagable.  The pain went away until August this year when the same disc prolapsed again.  I had another MRI and they confirmed the disc degenration was a bit worse and I had another prolapse (although smaller than the first time).  I was again offered the injection but told it would only settle it down and obviously wont cure the degenration so it will happen again.  The specialist has recommended a minimally invasive lumbar spin fusion to prevent further prolapses.  At the time I agreed but the pain has now gone again and I am now torn about what to do.  It doesnt help that I have general anxiety disorder so am worried about all the potential complications.  I am getting married in May and would hate to have another prolpase and it cause me problems on my wedding day, but I just dnt know wether to have surgery while I am not in pain??  Has anyone had the surgery and can you recommend what is best to do?

1 like, 30 replies

30 Replies

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  • frustrated61
    frustrated61 nik890

    Posted

    Hi Nik ~

    I'll try to explain what I have to say to make your anxiety minimal.  I've had spinal fusion from L2-S1 and Cervical fusion from C-4,5&6.  All were necessary as I was in an auto accident and broke my back in 2 places and fractured my neck.  I needed the stability.  I've had nothing but pain and more pain ever since.

    Many of us will end up with degenerative disc disease to some degree, that's a fact.  Disc prolasped (DP) is also many will come across in their lifetime.  However, it's when it comes to spinal stenosis that one really should cause to worry as it can actually paralyze you.  The DP can have minimal surgical procedures such as lazer treatment to open up the foreman so the nerve can flow freely through the spine.  I'm not sure if you need surgery of that extent and once it's done, you cannot turn it around.  I would suggest that you get another opinion and if your current doctor is going to be upset about this because you already have scheduled your surgery date, then that's another cause to get a second opinion.  If your doctor wants the best for you, he/she would welcome another opinion.  That's where I am with your situation as I am still after 10 years suffering from chronic pain in my neck. legs and spine.

    Good Luck!  Hope this helps.  Don't go in with your  anxiety leading you, go in, informed with a second opinion.  If you have to reschedule your surgical date, I'd say you're at least looking out for your future.  I've had to quit my job and basically turned into someone I don't particularly like presently.  I'm working on trying new techniques to help with the pain issues becasue drugs, well they only help so much, the rest is for you to endure.

    Let us know how you're coming along, please?

    Frustrated

    • frustrated61
      frustrated61

      Posted

      Also, Nik, do you have a pain management doctor?  They inject different meds into the spinal column (they are very knowledgable of these particular levels of the spine) Most in the US anyway, are anesthesiologist that become pain management doctors so they are very intelligent and know their business.

      But, I'm wondering if you can obtain one if you don't already have one to help you get by those prelaps moments.  Just a thought until you get a chance (should you take that advice) of a second opinion and with a wedding coming in May, you may be able to wait until after the wedding to heal.  There is nothing minimal about a spinal fusion.  I can assure you that it is one of the most painful surgeries you'll ever experience along with the fact that it takes over a year to heal.  That's why I'm saying, get a second opinion! please!!

      Warm regards,

      Frustrated

    • nik890
      nik890 frustrated61

      Posted

      Thank you!  I also am thinking it may not be the right time to do it as I am ansolutely terrified about all the potential complications.  I am in a lucky position as the moment though as I have medical insurance through work and access to someone who is extremely well respected in the orthopeadic world and travels teaching others how to do the minimally invasive spinal fusion.  So I have no doubts about his ability at all, however my anxiety disorder and tomophobia is getting the better of me.  If I was in constant pain, I would definitely have this.  However I am not, and currently dont even need pain killers.  I am so worried though that I will regret the decision if I get another prolapse and it ruins my wedding, but I just think I am too scared to go ahead with it at the moment?  I do have access at work to a second opinion service also from "best doctors" so maybe I should do that?  I just dont know what to do, I am so torn and unable to make a decision.  What you have suffered sounds awful and much worse than my situation so I can totally understand your frustrations.  Thank you for your advice.
    • nik890
      nik890 frustrated61

      Posted

      Also, I do have twinges of pain and a weak back so I know its not gone completely, but dont know if ts serious enough to warrant a major surgery at this point? Scared....
  • joy47826
    joy47826 nik890

    Posted

    My back is pretty miserable and I'm a senior, back first started to bother me at 18 and I'm now 76 and got thru my life very good....with chiro work, massage,  exercise and not wanting a back surgery ever.

    I know of those who do these fusions and still in pain, often worse, and then do another surgery and it's a vicious cycle of surgeries.....

    A neighbor who is older just had a back fusion and he says he's fine, but I'm kinda waiting for the shoe to drop....he's been dx'd with parkinsons now and I don't know if there is a connection....

    A lady friend had 2 back surgeries when she was in her late 20's or so and she's now 80something and her body is so contorted..

    These are the ones I know of personally....no one can feel your pain but if it comes and goes , I don't know.

    I'm dealing with complications of a hip replacement in 2010 and I swear I will die before another knife touches me.    good luck whatever you decide with this elective surgery......  

  • joy47826
    joy47826 nik890

    Posted

    Prolotherapy and Prolozone can be alternatives to surgery....if you can do some research there and buy some time for a while....once we do surgery, there is no going back.   
    • nik890
      nik890 joy47826

      Posted

      Thank you for your comments.  I am 38 and last year was the first time I have suffered with back problems.  I dont want it to prevent me from living my life and going to the gym etc but am so unsure if its the right thing.  Everyone I know keeps telling me I should get it done, but they arent the ones going under the knife.  Its a hard decision to make as although I have some pain at night, and some twinges of sciatica, its mostly settled for now.  I know it will flair up again but wonder if I should wait until the pain is more constant before I resort to surgery?
    • joy47826
      joy47826 nik890

      Posted

      Hi again, as I see it there are groups of people who have a surgery mindset and many who will do everything possible not to do a surgery and especially these major types....

      I've been in alternative healing for 25 some yrs and do ALL in my power to not do a surgery....this hip replacement at 72 has been a nightmare and I often wonder how I'd be if I never did it.  

      I had a hysterectomy at 40 and was left with sciatic nerve damage and have lived with that for over 30 yrs.....there are wonderful  stretching exercises for the sciatic nerve stuff.   Have you done Physcial therapy and talk to others besides a surgeon about this.....surgeons most always want to do surgry, this is their business..

      I worked out at my gym into my mid 60's....from early 30's to then..  Probably did a lot of damage from all those years of working out.    J

  • joy47826
    joy47826 nik890

    Posted

    I think of this one woman I know who has a mindset of drugs and surgery, totally opposite of my mindset....   She had a fusion back surgery a few months after I had hip replacement in 2010, and was never out of pain....she ended up doing more fusion surgery less than a year later.....I don't know how she is now as we've lost contact.

    So it's your decision but do talk to others who will discuss other than surgery...

    • nik890
      nik890 joy47826

      Posted

      I'm not against surgery but I just don't know if it's the right time. As I get married in may I'd hate to be in pain so I'm torn.  I also have been having nightmares about surgery and all the potential complications.  I know I'm probably blowing it all out of proportion but I just can't help thinking it's all signs that it's not right for me at the moment? The thing is I have medical insurance at the moment and if I were to leave my job I wouldn't be able to afford the surgery at a later date. It's all so confusing.
    • joy47826
      joy47826 nik890

      Posted

      Well, my last words are YOU KNOW WHAT YOU HAVE NOW, BUT DON'T KNOW HOW YOU WILL END UP.  Surgery SHOULD be the last resort, I've heard this for many years.   You may be able to get thru life and not do a back surgery....learn the exercises and talk to alternative people.....

      Now maybe you'll get some really good comments from others, but we all have our outcomes no matter what we're told.   

  • DonnaL
    DonnaL nik890

    Posted

    Hi Nik,

    Always get a 2nd and even 3rd opinion. Then at least you have consensus or not and can make a fully educated decision. From my own experience, I would see a neurosurgeon if you haven't done that. They are the experts in not damaging nerves when these non-invasive procedures are done, which is often why people still have pain afterwards.

    4 months ago I had  a fusion of L4, 5 & S1. My discs weren't the issue. I was born with L5 spondylolisthesis that worsened with age, and particularly in the last couple years. I am 66. For me, it was a no-brainer as they say, even at my age. I had shooting sciatic pain down my left leg for years and it had moved to the right leg about a year before the surgery. I also had nasty back stabs every time I moved the wrong way, right at L5. Spinal stenosis was worsening.

    But I do have friends who have had non-invasive procedures for discs that are simply blown and no amount of injections will fix that. One can't live on pain meds forever.  If you are a young woman and get another opinion that this needs to be done, you have every chance to recover well. I live in the US so don't know how much choice you have there, but my advice is only to have a neurosurgeon if you go ahead. I had a wonderful neuro and 4 months out , I'm doing really well. Physical therapy to continue of course, but I'm so happy!

    Believe me, I lived with pain during my entire current marriage of 30 years...sometimes intermittent, sometime not. If the neurosurgery I had this summer were available years ago, I would have gone for it. Whatever your decision now, you will still need the procedure later.

    I wish you luck and once you feel educated enough, be brave and strong and make your decision!

     

    • nik890
      nik890 DonnaL

      Posted

      Thank you for your comment.  I will look into the second opinion. I am going to call AXA today to see if they will still cover the treatment if I put it off til after my wedding.  This will give me time to get the second opinion. The consultant I'm seeing has a  fellowship in spinal surgery and so I know I'm in good hand but just don't know if now us the right time. I'm just unsure if the health care provider will  cover it if I delay it, for so long so I'll need to find out. I'm glad your surgery went well as it sounds like your situation is a world more pain than mine.
  • DonnaL
    DonnaL nik890

    Posted

    You're welcome Nik. For now, enjoy your holidays and start planning and focusing on your wedding. Best of luck!
    • nik890
      nik890 DonnaL

      Posted

      I've arranged for the people at best doctors to contact me re the second opinion and cancelled the op for now. I'm putting it back to at least after my wedding in may and will hope for the best x
    • Kimb63
      Kimb63 nik890

      Posted

      Dear nik890, I was pleased to see some sound advice from DonnaL and that you have decided to postpone things until at least after your wedding. As you have Spondylolisthesis, you will probably need surgical stabilisation at some point, but weigh up your pain symptoms, available medications to manage pain relief and lastly, mobility. I have just had spinal decompression and fusion of L4/L5 with the bone graft for the caging and the rods and screws to stabilize everything, had surgery on 23 Oct. 2014 and am now back at home. However, I have been suffering Sciatica in both legs plus the tingling toes/loss of sensation in one leg with the most horrid hip pain which led to being unable to turnover in bed without first sitting upright. the loss of mobility and frequently needing the support of a cane for about 18mths before taking this option. The surgical discomfort is manageable with the bone graft site being the most uncomfortable point and, although I KNOW it will take about a year to recover, I also know that for me, personally, this is the best long term solution. Hopefully by June, I will be able to withstand 4&1/2hr plane ride to get some sun! =) I wish you many years of happiness for your forthcoming marriage and the strength to do what is right for YOU!! Good luck.
    • joy47826
      joy47826 Kimb63

      Posted

      Oh, I was told I have the Spondylol.........probably 30 yrs ago and I'm 76, I'd never do a back surgery.....there is a specific exercise I was taught and I do it for this Spondy stuff....and know a back support velcroe type helps support my back.    Joy 
    • nik890
      nik890 Kimb63

      Posted

      Thank you.  I dont have Spondylolisthesis as far as I know?  Just degenrative disc disease.  I am getting married in Cyprus so the last thing I need is for another prolapsed disc before the wedding, but if worse comes to worse I can always get a steroid injection to tide me over.  I really dont want surgery unless its a last resort.  My phobia doesnt help though. x
    • joy47826
      joy47826 nik890

      Posted

      I have phobia for a surgery, so that can be a good phobia....
    • joy47826
      joy47826 Kimb63

      Posted

      It's DonnaL who says she has Spondylolisthesis, says born with it, maybe I was too....an MD I hear on radio, says spondy is not a surgery issue....there are good exercises to help reverse it some...
    • joy47826
      joy47826 nik890

      Posted

      What kind of phobia is that....I don't really have a phobia condition, I have a fear of surgery and drugs.....unless life saving...One person I know  has such a phobia of doctors that she makes herself sick and panicky about going to one.....I'm not that bad, but only go once a year to my general MD who is integrative in her practice and do acupuncture and other alternative treatments to keep going...

      Maybe if I had a great hip replacement outcome I would feel differently, but then I read SO MANY negative stories on joint surgeries for one major thing....and I've heard from personal friends about their back surgeries and  how regretful they are, one leads to another and on and on.

      An MD on the radio here in Los Angeles talks about staying away from doctors as much as one can....he was to be a surgeon himself and when he went thru a shoulder surgery botch, he changed his path...he now does prolotherapy from dextrose to stem cells to help people stay away from surgery...UNLESS AN EMERGENCY.

      I don't know that anyone leaves this earth without a back issue of some kind but do all to stay away from the knife....

    • Kimb63
      Kimb63 nik890

      Posted

      Dear nik890, that's where I'm planning on going back to on holiday next June as just love Cyprus <3 am so jealous =) i will keep fingers & toes crossed for you! surgery is always the option of last resort and your phobia/anxiety is a very real concern as being tense always seems to magnify the pain sad go forward thinking very positive thoughts and i hope that you will escape the need for any surgical intervention and are fit, prolapse/pain free for the walk down the aisle! good luck nik890 and many congratulations on your forthcoming marriage. x am="" so="" jealous=")" i="" will="" keep="" fingers="" &="" toes="" crossed="" for="" you!="" surgery="" is="" always="" the="" option="" of="" last="" resort="" and="" your="" phobia/anxiety="" is="" a="" very="" real="" concern="" as="" being="" tense="" always="" seems="" to="" magnify="" the="" pain="" sad="" go="" forward="" thinking="" very="" positive="" thoughts="" and="" i="" hope="" that="" you="" will="" escape="" the="" need="" for="" any="" surgical="" intervention="" and="" are="" fit,="" prolapse/pain="" free="" for="" the="" walk="" down="" the="" aisle!="" good="" luck="" nik890="" and="" many="" congratulations="" on="" your="" forthcoming="" marriage.=""> go forward thinking very positive thoughts and i hope that you will escape the need for any surgical intervention and are fit, prolapse/pain free for the walk down the aisle! good luck nik890 and many congratulations on your forthcoming marriage. x>
    • nik890
      nik890 Kimb63

      Posted

      Thank you Kimb63. I really hope your sciatica and pain improves soon and you manage to get back to Cyprus too x
    • Kimb63
      Kimb63 joy47826

      Posted

      As previously stated, it is an individual choice and has to be balanced against a number of factors. If you have congenital spondylolisthesis, you may be fortunate enough to never experience the pain and disability that I have gone through and being as I live within the area of a world renowned spinal centre, I know that, following diagnosis with grade 4 spondylolisthesis and everything collapsing, I was best placed to make an informed decision. Good luck with your situation, which seems manageable through exercise and bracing. However, for myself I will remain forever grateful to the knife wielding practioners who have given me back my life and mobility . My thanks also go to all the drug researchers who have made life relatively manageable in the interim and to all the practioners of medical inovation whether non-invasive or not.
    • Kimb63
      Kimb63 nik890

      Posted

      Sorry nik890, I meant for you the degenerative disc disease. It's DonnaL who HAD spondylolisthesis but, as with myself, the wonders of modern medcine and latest medical technology have given us back our mobility and brought 'normality' to our lives. I no longer have pain in my legs or constant sciatica and am working hard to improve my 'core' strength. If you are a gym fiend, like my sister, then when you have a prolapse, your core strength is generally key - sister had L4/L5 prolapse at beginning of the year but through a great physiotherapist and her trainer at the gym, managed within 8-10 weeks to recover. As you enjoy the gym, it should be easier for you to maintain your core strength which will hopefully help to prevent further prolapse and/or give you the ability to rely on your core strength for a speedier recovery should you suffer the misfortune of another disc misbehaving. x
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