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Ug, need some advice - please!

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:24 AM in Back Surgery and Neck Surgery
I have had back pain for 20+ years. Episodes of those horrible spasms that throw you to the floor and leave you on the couch for days about once or twice a year. My mobility is good as far as walking - I can still hike and do my job. I DON'T have sciatica yet, but doc says it is coming soon. I wake up at night sometimes with pain, have pain with sneezing, after lots of exertion and I can't be on my feet for prolonged periods of time.

I saw two spine surgeons, first one told me my MRI was "an ugly mess." Second neurosurgeon recommends lumbar fusion at L4-5 and L5-S1. I have bone on bone in lower segment, disc herniation above it. Not sure of the approach yet whether from the front or the back, I ave to discuss that with her in a few days. I am scheduled for surgery on 11/12/08, and I am FREAKING OUT!!! :O Reading the stuff here is enough to scare anybody. :?? I am wondering if I am better off just not having it and sticking with taking Tramadol all the time and Percocet during a flare-up or will this surgery really make a difference? I don't want to go through all this and then still have the pain. I feel that because I don't have the pain in my legs maybe I am jumping the gun? Can somebody PLEASE give me some advice here? Thanks so much!
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Comments

  • Hi and welcome to Spine Health.

    The big concern I would ask the doc about, is the risk of nerve damage and cauda equina syndrome. Basically loss of bowel and bladder control. That's great that your pain is manageable, but if structurally your spine is unstable you might want to discuss that with the doc and get his/her opinion on the risk you would be taking. Also if it were me, I'd ask about, if I have the surgery now to avoid permanent damage, would the results be better, than if I wait until I develop those symptoms and then have the same surgery.

    Just my thoughts on it.

    Hope that helps

    "C"
  • Hi!
    I can only speak for myself, and of course every case is different. I am 10 weeks out from TLIF L3-L4. I never ever had sciatica, but like you would have "episodes". Finally it reached the point where I could not even cross my ankles without severe pain. It would sneak up on me unexpectedly. I could be fine for awhile, and then I would reach the point where I couldn't get into bed or get out of bed...get into the car or get out of the car...sit down, stand up...I'm sure that you get the picture. I quit driving because I was not safe. Finally, I bit the bullet and was referred to a NS. In my case, it was the best decision that I could have made. Yes, I still have pain, but it is the good pain...the pain of healing. Yes, I complain about things like physical therapy and getting into and out of the car. Just this last Friday, I had an incident after PT where I bent or twisted when leaving PT. My biggest fear was that the old pain had returned. However, I asked others on this site if they had similar experiences, and they had. It was a "normal" fear to have.

    Keep in mind when you read what is posted on this site that some of the people are experiencing problems. That is why they visit this forum. I know that I did not find this site until after I had the surgery. And to be honest, when I read some of the postings I was afraid, too. But in my case, the positives of my surgery have outweighed the negatives. But, once again, every person is different. By all means discuss your fears with your doctors. Good luck with your decision.

    Ann
  • Surgery is certainly not something to rush into. I had never even thought about back surgery even though I had back pain on and off for years. But injections kept the pain from interfering with my life. Then I started to develop hip pain - injections, ultrasound, etc did not help. My pain doc sent me for an MRI not expecting it to show anything - and immediately arranged for me to see an orthopedic surgeon the next morning. When the surgeon said my spine was so unstable that I was risking paralysis, bowel/bladder dysfunction etc. I knew I had no choice but surgery. The pain I had was not the deciding factor - I had not even tried pain meds and Pilates 2 times a week did help. But the possibility of long-term, very serious problems could not be ignored. So - make sure you know the alternatives to surgery and the risks of having/not having surgery.

    Everybody is so different - their reasons for needing surgery, what kind of condition they are in going into surgery, their recovery time and experiences and many other variables. I had anterior/posterior fusion on July 21 and 23, 2008. It has been a long and often frustrating recovery but the recovery pain has not been awful - I took minimal pain meds for a couple of weeks but nothing but ice and heat since. My pre-surgery pain is virtually gone. Yesterday I traveled a total of 11 hours - flight and airport time - and another 4 hours by car today and am not sore.

    So - decide with your doctor is surgery is necessary. If it is, prepare for the recovery (this site has so much helpful info to do so), get in the best shape you can between now and your surgery date, and go into it expecting success.
  • I can totaly relate to what your saying. I had a lamnectomy several years ago, I still have sciatica, and lower back pain. The discogram, MRI, NS, and PMS, have recomended I have a 2 level fusion, However my pcp is kinda ify on it. I have researched this, STRESSED, freaked out (to myself)and family, I have been so proccupied and worring about life after surgery. Questioning myself on how having the surgery will affect my life over the next 2 years as my back heals. I can walk quite a while before I get fatigued and need to rest. I must always use a lumbar pillow and ice pack and change positions frequently, and I just purchased a memory foam mattress, I now take a 5/325 Noroco 3x a day and a 10/325 at bed time, along with 1 Robaxin and Ambian CR. When I cant get away from the pain, I get an injection of Tremadol from my pcp to break the cycle and so I can get a grip on the pain again. For me the thought of no BLT I would need to garden and raise my flowers...morning glorys, butterfly bushies, many perinials, and veggies, my dogs, traveling...I was in my garden and thinking of how my hubby will be...actualy living my life for me...caring for me after using the restroom, doing all my house work, my flowers, gardening, I guess pretty much everything but breathing! For me My brain says no, and my body will just have to suffer, for a couple of more years or until, I CANNOT take it anymore. Personaly, I would postpone surgery maybe another month, so you can do some soul searching and researching, and take a deep look at every little aspect of your life as it is now, and how surgery will effect you. Im in the prime of my life now, and if I were in my 20's I probably would have jumped right on it. I'm sure after the fusion was completed, life would return to semi normal as before, maybe with the pain lessened, Sorry this is so long, but this is a life altering surgery. I even compaired it to my gastric bypass BUT I still eat 100% of everything I ate preop, but VERY small amounts ie 1 small piece of cake as to a large piece vs watching or doing. This is only my openion, it just isnt the right time for me. Read under the "good news" to see how this surgery has been benificial for so many people. Keep us updated. Rose
  • You are all so very helpful >:D< Thank you. I had another surgery unrelated to my back several months ago and now have my deductible paid, hence, my urgency to get this done this year while it will cost me nothing! Everytime I move, get up, etc... I keep think - geeze in a few weeks I won't be able to do ANYTHING! I am willing to go through the pain of surgery and the risks, it is just that I keep hearing "horror" stories from everywhere on spinal fusions being a huge mistake, they don't fix the pain, you get worse, etc... it is making it much harder for me to stay positive. I swear, this is going to drive me nuts and I have to let my job know what I am going to do! How long before you know if it "worked." Remember, my pain is totally back pain, not any pain in my legs (yet).
  • EMT lady, hi and welcome to SH, you have found a great site full of a wealth or information and support. I believe spine surgery should always be a last resort, but that said one must take into consideration the risk of waiting. Have you tried any injections for your back pain, LESI's, facet injections, etc. Sometimes these will give weeks to months of relief. I did injections and when they no longer helped, I had developed a persistant limp, and my spine was determined to be unstable, I decided it was time for surgery. It is very scarey and stressful, but hey I did it, I made it through, and I consider it a success. I am still healing and dealing with that process as brace weaning and PT have brought on some new aches and pains, but that too shall pass. Please do a lot of research so you thoroughly understand what is going to happen and what recovery will be like. Remember everyone is different, so there is no guarantee you will be the same as the next, but you can get some idea. There are both good and bad outcomes here on SH, but remember many people who are fully recovered move on and stop posting. Those with problems are more likely to stick around the forum. Read the Good News section and look up top here for the post-op must-halves list, it is very informative. You wont need it all, but it clues you in to some possibilities. Write down all your questions and take them with you to your NS appts. My surgeon said there was an 80% chance this fusion would work and those are decent odds. So far, so good :) . Good-luck with your decision, I know it is hard, it has been the hardest one of my life. >:D< Sue
  • Do not regret my surgery one bit. I am feeling soooooooooo much better already. Yay! Don't chalk it up to my age, though. My body has been through a LOT... And actually, probably more than your average 50 year old. Not just back related, I'm talking in general. So my young age has nothing to do with it. Surgery really does work for some. And some of us end up happy!
  • I might be a bonehead - excuse the pun, but where is the "good news" section as referred to above? :?? I think I need to read it. I got almost NO sleep last night worrying over this. I moved my appointment with the neurosurgeon up to one week from today to really drill her on my questions.

    I am really touched by all your stories and you all bring up so many good points. It just seems that by reading here - the good stories are far outweighed by the bad outcomes. :(
  • I had fusion surgery 6/26/08 and am glad I had it done. Like you, I suffered debilitating issues only occasionally. I finally got to the point where I could not walk to the bathroom or anything and I realized that I could no longer live this way. I've had back problems on and off for about 20 years. All of my pre-surgery issues are gone and am now just dealing with the healing issues. Yes, no BLT is frustrating, to say the least, but my alternatives were worse. I am now 3-1/2 months post-op and went to a political rally yesterday where I had to walk a looong way and then sat for about 5 hours and today feel no worse than I did yesterday.

    I would encourage you to evaluate all your options and then choose what you can live with in the long run. Be sure to keep us posted! There are so many caring people here and will give you so much more info on what to expect after surgery than what the dr's will tell you. Blessings to you today!

  • You can go to forum home, then go to casual conversation, and click on good news. You will get the hang of it. Welcome to spine health.
    mark



    http://www.spine-health.com/forum/casual-conversation/good-news
  • I so agree with the point above - you need to do some soul searching and ask yourself whwther you are at or nearly at the end of your rope? AND consider, if you wait longer (say 6-12 months) what will you look like then?
    That is something to discuss with your surgeon who will be juding this anyway.
    I am thinking you "may" be more debiliated and then longer term your recovery following a fusion is slower.

    IMHO Fusion surgery shouldn't be an option if you are not ready to give it 110% of Good attitude (I will get better stuff!) and ready for 2 years of a recovery / adapted life.

    The gains are HUGE however.

    Don't worry yourself silly cos it won't help you think straight.

    I personally ended up having pain 24/7 - nothing at all helped and it was eating my life. I have no regrets at all about the surgery.
    I finally feel I have turned a corner and whatever happens, I will settle the pain and find other ways of doing my life.

    I often wonder if I had had surgery a wee bit earlier, that my recovery may have been quicker but thinking like that is daft.

    Good Luck and try not to worry so much.

  • Emtlady,

    To have the surgery or not, is a decision between you and your surgeon. Nobody else can advise you on that. However, if you elect the surgery, there are lots of people with successful stories who can give you hope. I consider myself one of these lucky people. Five and a 1/2 months after three-level lumbar fusion I feel and look well. My old pain and numbness are gone, and most of the restrictions. I almost totally fused, and just began PT, where I hope to learn how I can pick up all my old activities without hurting myself. Foe two days after surgery I had a morphine pump, since then the only medication for pain I took was for my migraines that I had almost all my life.

    Good luck with making this very important decision.

    Kin
  • Emtlady, as others here have said, there certainly are a lot of successful surgery stories around, in fact the majority of surgeries are successful - it's just that most patients move on from this site and get on with their lives when they are better.

    I am not pro surgery - you should exhaust all conservative treatments first, but as haglandc pointed out there are actually two reasons for surgery: The first is to reduce/remove pain and the second (and often forgotten) is to stop the condition getting worse and causing complications such as permanent nerve damage and in the case of lower lumbar problems cauda equina syndrome.

    All the best... Bruce
    Keep positive!

    Bruce

    ...an old timer here and ex-moderator

  • I'm very pleased with my surgery! I had a level 2 fusion ALIF approach on September 25th and I don't regret it at all! Yes, surgery is a scarey thought, but in the long run it's so worth it. I've had all the tests done, all the PT, all the injections and after all was said and done and the pain was unbearable, I went for it!
    The recovery is slow, but each day I know I am getting better and better. I do have my ups and downs like anyone does, but I am sooo happy with my decision to have the surgery as well as my husband and kids are. I will be back to myself before I know it! I'm even in a wedding on November 8th and I plan to walk without my walker or cane and have a good time!
    Please consider all the other options that are given to you before you even consider a fusion, as a fusion is not the easiest way out! Try the injections and PT before too. You never know if one might help you out for a while, especially with the winter coming up!

    Take care!
    Kim
  • Well, I moved my appointment up yesterday to next Tuesday to really go over this stuff. ~X( You all have been so wonderful and helpful. I had myself convinced last night that I was just going to stay on pain meds and the heck with surgery. That is until I woke up this morning and hobbled to the bathroom... :S At least I know there are some positive stories out there and it is not ALL bad. One thing I do know, I WILL get worse, they already told me that. I am struggling with waiting until that happens or just getting it over with now.
  • wait and see what the surgeon says...

    You may find that his suggestions and explainations help you determin what to do.
    You know, once s/he explains or reviews your scans there may be a more /less pressing need for surgery or not, maybe.
    Plus a clear explaination of risks and possibilities.

    Whatever your fate, SH is here to support you!

    Good Luck
  • You have already done this, but make a list of all the questions for your doc, regardless how insignifficant or how small they seem ask. Ask also if there would be a good possability of future surgeries, I have read on here that maybe after fusion it causes the disc below and above to carry the load resuling in further surgerys, I may have read wrong. Have you had a discogram or MRI? Have you tried physical thearpy? Traction? Ice packs, Epidurals, selective nerve injections? By no means am I trying to talk you out of this, its just my nature to find out every detail and try and exhaust every option, weather is mine or my familys health, my dogs health, Travel, remolding, :D ...You name it I will question it until I feel Im making the right decision, because if I make the mistake I have to live with it. (BTW fusion surgery is the only thing I have really stressed over) #:S Good luck with your doctors appointment, >:D< keep us posted, Rose
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