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How do you know when to say "when" with surgery

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in Lower Back Pain
Help!! I am 33 years old and have been dealing with chronic back pain for a little more than 3 years now. I have been doing conservative treatment for 1 1/2 years. I recently went 3 "conservative" neurosurgeons- 2 said I need to have disc replacement and 1 said spinal fusion.

I have been diagnosed with an annular fissure in the L5-S1. I am working with pain management doctor, orthopedist, physical therapist, and psychologist. All who have warned me to go conservative. Until recently my pain doctor and orthopedist have mentioned I might need to have surgery.

Here is the thing....I get confused because my gut feeling is to have surgery. I have a surgeon who I heard about from 4 different people who recommended him to me. He is well known. He says there is a chance of improving 100%. I really do trust him because of his reputation- he has been on TV before. He says conservative treatment will not help my case. Am I crazy to believe that maybe my life could get better like he says?

I feel I have really waited and tried to not have surgery. Had cortizone injections- helped a little. Chiropractic for 6 months. Physical therapy and pain meds last 8 months. Pain meds including vicodin don't work. Previous set of physical therapy 2 years ago. Stretching last 3 months. Traction for 2 -3 months. Out of all of these- cortizone helped the most. Stretching used to help until last month when difficulty walking problem started.

I really want to jump into this surgery and yet people keep scaring me into thinking surgery ruins people's lives!! But honestly, I really don't see how much more my life could be ruined. First of all.....socially.....I cannot keep up with people my own age.
-have trouble walking-legs feel heavy and there is delay between brain and steps I take
-tingling down legs constantly
-painful to walk on the slightest incline-
-painful to walk upstairs
-sometimes have hard time going from sit to stand position
-sensitivity to hardness of chairs.

Not to mention I am unable to ride a bike, I cannot even walk slowly in a pool, hike, walk too far. When is it time to say when?!!

Please let me know what you think.

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Comments

  • Welcome to Spine Health.

    I am of the mindset, that if most if not all conservative measures have been tried, no progress is made, surgeon I trust says surgery can help, then I go with the ultimate authority for myself ... my gut instinct!

    "C"
  • I may not give you the answer that you want to hear but you asked for opinions so here is mine. I also suffer the same pain as you do and I have already had surgery. My pain is now coming from my facet joints. I had an annular tare repaired through endoscopic microdiscectomy. Most of my disk at L3/L4 was removed. I am still in lots of pain and would be a candidate for fusion. I have done extensive research on the subject and the only way that I would personally have it done is if I could not move at all. The success rate is only about 50%. The ones that do experience success have great success. The ones that fail suffer more pain than they started with. For me the odds are not worth the risk. as for ADR, my doc whom I love and trust has told me that there is no way that he would even consider ADR right now because they are far from being perfected. He has advised me to try and hold out (using pain meds) until an advancement in the area with better chance of success comes along. That being said, I am 45 years old and take long acting opiates and a few other meds and use a lumbosacral back brace in order to function from day to day. If it gets to the point that I can no longer function with these things and the pain can no longer be controlled before a new procedure comes along, I may have a change of heart. just remember that there is no guarantee that surgery will take your pain away but the decision has to be yours. Good luck to you in whatever you decide to do and please keep us posted.
  • Ouch! I am so sorry!! I was wondering ...so they removed most of your disk but did not replace it with anything? Is that causing problems in your disc height? I hear stories like this and it makes me want to run from surgery!!

    Yeah, I know I keep hearing that surgery is risky. Kind of scared of it because I hear horror stories like yours and then I keep going back to the drawing board wondering if I am just making too much out of it then needs to be.....

    I guess if I heard of people who have successful surgeries I may change my mind. But then like you said...some people do really well and some people's lives are ruined. And I think of myself and wonder...I wonder if I would do well and how much freer I would be if it DID work!! Is it worth it to live the way I am feeling trapped in a body that is preventing me from actually living a normal 33 year old life? What if everything went well--- my life would be drastically different!!

    Thank you for sharing your story. I
  • I waited and did the conservative thing for 17 years -- I will never, ever do that again.

    I had a microdiscectomy and laminectomy las year and it failed. But for 2 brief months I felt the vest I had in over a decade; my legs worked like they used to (no delay or overmovement), they weren't heavy, and I did not hurt.

    The surgery failed and just before the 4th month started, I was scheduled for a 3-level fusion. I am recovering now, and I feel pretty good. If I honestly had to compare to the past years, the pain is no worse than that before I had the first surgery. it is tolerable and I am getting stronger every day; but then some days it is bad enough that I only get up to walk around the house a couple laps and am lying down the rest of the day.

    Surgery is a difficult thing to decide on; it is not only personal, it is social, professional, and spiritual. You will find out quickly your tolerance for stress, who your true friends are, and just how much faith you have in yourself and those around you.

    I also would not consider an ADR -- too new and unproven. I would however, based upon your symptoms, age, and lifestyle needs for at least the next 20 years, say to have the fusion done.

    It's all up to you, but look deep and read all the recovery posts in the 'Neck and Back Surgery" area. It may help you to sort it all out.
  • No, there is not anything in the place of my removed disc but it is not bone on bone either. However, it has made my spine somewhat unstable. It did relieve my scatica. A fusion would stabilize my spine but I do not want another surgery that could make me worse. Also after fusion it increases the pressure on the discs above and makes it more likely that they too will rupture. But, you are the only one that can say if the quality of your life now makes it worth taking the risk. Good luck and please keep us posted.
  • As a person with 2 failed spine surgery's, and a completely different situation that yours, I can't comment either way. But I do want to touch on the subject of "hard" chairs. I have severe nerve damage on my left side, all the way down, due to untreated sciatic pain for an extended period of time. In no way can I sit on a chair that isn't cushioned! It's impossible, the pain is too much to take. This has been going on for 9 years in total. If a restaraunt doesn't have a soft booth, we can't eat there. You know where I'm coming from right? I have to tell one more thing that has angered me for years. When I first started to see a PM for my pain care, I had a not very good doctor. On one particular appt. I had sat in his waiting room for about an hour on one of those little plastic chairs and it was killing me. As I walked into the exam room I was limping due to the left leg. While in the exam room I got some relief from finally getting to sit on a soft chair, so when I left I was no longer limping. As soon as I got home my phone rang and it was my PM. He accused me of faking my pain just to get drugs! He said that I limped while coming in and that he watched me from the window as I walked to my car and I was no longer limping. He said he was calling my surgeon to report me! To this day, this is a permanent part in my medical file and follows me to every new doc. It certainly doesn't look good, I look like I'm a faking drug addict! The only reason that I bring this up on your thread is to warn you and anyone else who may read this. It's amazing what can be said and written about you. Back to your question, I can't stress enough to you to make sure that if you do decide to have this surgery, make sure that the surgeon does ONLY spines and nothing else. You also have a right to ask what his overall success rate is. Do your homework, which I didn't have a chance to do at the time. Another point that I would like to make, the longer that you have sciatic pain, the more damaged the nerves will become. But along with surgery is the risk of scar tissue forming. There are so many different things to consider and balance out. Whatever you may choose to do, I wish you the very best of luck and a speedy and successful recovery. Keep us posted with your decision!
    Jewels >:D<
  • And this is just me, I have been dealing with chronic back pain for 4 years. I have had every test done known to man and have tried every possible treatment (PT,medications,injections,nerve ablations,etc) Today I had a Dr appt with regular Dr who said it is time to consider surgery. For me, I am willing to consider it,as I have lost my quality of life. I have a 9 month old daughter who needs my every attention and not being able to do that sometimes is what makes me want to get the surgery and pray for success! Its all about what you feel you can handle. If you are doing ok with medications and PT, then I would wait on surgery, but if you are having trouble with most things, as I am, I would seriously think about this and consider your options. Good luck to you and I hope you get relief in whatever you choose to do. :H

    God Bless!
  • dilaurodilauro ConnecticutPosts: 9,740
    Christine, the decision you need to make is going to be a very important decision. I can only stress that you do as much research as you can to become almost an 'expert' Here on Spine-Health we can provide our 'own' personal experiences, but please do NOT take anyones input as being formal medical advise. The members on this forum are not qualified to do so.

    My feelings on spinal surgery is that you first have to make sure that you have exhausted all the conservative treatments that could potentially help you. I have read so many posts where people try one of those treatments and if it doesn't solve their problem they rule it out. Many times these conservative treatments take time. People can go through months of these treatments before seeing any results. But the most important thing to always remember is to keep in touch and discuss everything with your doctor(s). Get second opinions if you have doubts. Many times you need to go with your gut instincts. Thats something that isnt taught, it isnt learned, its there. There are situations in which conservative treatments will not help. But again that is something that only you and your doctor can decide upon.

    If the time comes that surgery is the answer for you, you already know that you have done your research , you understand the general procedure and you are fully aware of what to expect after the surgery. So many people spend time on finding the perfect doctor. Some look to the big names, those that come from the big city hospitals and have 1,000's of surgeries under their belt. To me, the most important thing is to have trust and confidence in the surgeon who is going to perform your surgery. If he drives a Mercendez or a VW doesnt matter. Spinal surgery has become very common. It is no longer a very specialized procedure. There are conditions and situations when spinal surgery can become more involved (thoracic being one).
    Another very important aspect is knowing the hospital that you will be having your surgery at. Keep in mind, that the surgeon will spend 4-6 hours (approximate) during the surgery, but the rest of the supporting staff, the OR nurses , the floor nurses are really the ones that will be taking care of you. I would spend time getting to know the hospital facility and even meet a few of the nurses.
    Surgery can be the only solution for many situations. In my seven spinal surgeries, I had no other options, it had to be done, or I would have had to deal with much more serious conditions. But, I also look back and think what if I didnt have that surgery or IF I didnt do this, or IF I did pay more attention to what I was suppose to do. Too many IFs, I cant change what was done. But I can tell everyone, if you do have surgery, make sure that afterwards you adhere to all the restrictions and limitations that are given to you.
    Failure to do so, is probably the fastest way to get towards the next surgery
    I can only really stress doing your homework. Get to know as much about your condition and the actual surgery as your doctors do.
    The only other parting message I would offer is to have support from family members, friends, etc after surgery. Those are the times when you will need help.
    Good luck and if you have any questions, ask here and hopefully we can provide you with our own personal experiences.. But remember, we are not doctors.

    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
  • Wow, Ron. That is some great advice. I HAVE decided to go with surgery. I feel after my pain doctor agreed with surgery, it has made me feel like that is the right decision. I have really tried to avoid surgery and have went conservative for 3 years now.

    I know people are not doctors on here but it is good to find out what people's experiences have been.

    My problem now is knowing WHO to go to. After talking to my pain doctor, whom I respect, I am now second guessing the neurosurgeon I chose. He says he would never go to that neurosurgeon. :O He listed off 2 others. Not to mention the other 3-4 that have been HIGHLY recommended to me. It is really nerve racking trying to figure out who is best. Does a doctor's personality give any hints? I mean the one I originally chose said I could possibly recover 100%. Now I don't know what to do. I am so worried about the effectiveness of the surgery 10 years afterward. Are you happy about your surgery? If so, what kind of "homework" did you do? I am planning on possibly talking to the nurses of each of the suggested physicians but how else can you check them out? Have you ever used "healthgrades" to check out a doctor? Is it effective?
  • If your PM suggested two of the docs I would say that is a step in the right direction. Another very good thing to do if you are able is to visit the hospital where the surgery will be done, meet some of the nurses(as Ron suggested) then ask the nurses if they were facing a like surgery who would they use? I have personally tried this tactic and it worked extremely well. That way they are not bad mouthing other docs, they are just saying who they would want to do their surgery. The nurses really do have the inside info on these docs and the doc that they would personally use would be a great place to start. Good luck and keep us posted.
  • Having surgery is a leap of faith, in the process you are about to receive and the decision you have made. Nobody runs towards surgery with open arms rather apprehension trepidation and some concern for the future.

    The optimum time is your choice and as said, based on facts of your evaluation and recommendations from your doctor, we should all attempt to have a positive attitude, we may have waited adequate time for the alternatives to be addressed and now has come the time for surgery itself. We all go through that process of timing and for most no short cut is possible and as we progress though mode of treatment that eventually prove ineffective, no surgeon is going to initiate any invasive process when an alternative remedy would suffice, you would what him to be confident in success.

    The real question, is it going to work will I be worse, and nobody can tell you that it is all a risk even a calculated one based on research, we are all individual. Doing nothing may not be an alternative and for most we have waited a long time to get where we are, and already adapted to a foray of imposed change.

    You have to feel right with the decision you have made, we all worry about the future and rightly so. You know when the alternatives have run out, and with the best of intention listen to those you believe in, the developing relationship of care is important and a vital element of the successful process.

    As DiLauro said, look to the future, one day at a time and be kind to yourself. When the impact of the pain imposes sufficient change that surgery seems an option, than your mental attitude does change and taking this option seems more favourable.

    Good luck and what a good question.

    John


  • I'm been in constant pain for 7-8 yrs & have also lost my quality of like - to be honest it sucks! I also have tried everything EXCEPT surgery. But after all these yrs of pain & inactivity, I would guess my chance of success would be slim. I had arthroscopic knee surgery (torn meniscus) several yrs ago & it was supposed to be a piece of cake - until they found arthritis all around my knee. A short recovery turned into a few months. So I can only relate that to any surgery on my back - I would go into it with a negative attitude... which is bad. Hopefully yours will be different.
  • Christine,

    A doctor's personality can and cannot give hints. Some of the most successful docs have the bedside manner of a brick, whereas others are awesome.

    I had to go with my intuition. It has proven to be the best guide for me.

    There are some folks who say my NS is an arrogant jerk. I think these are the folks who will find most everyone they consider, an arrogant jerk.

    So remember that people we deal with, in a large part are a reflection of ourselves. Being positive, yet realistic is the key for me.

    "C"
  • My surgeons mannerisms are that of a brick....... But he is a great practitioner and I trust him with, well, my life frankly and respect highly his opinions on me.

    Best wishes,
  • Hi Christine,
    I just wanted to add one more opinion to all the others. I too suffered with a bulging disc at S1 for years, and basically like most people dealt with it as best as possible. I too tried the conservative approach, which included chiropractic care, excercises, and most recently physical therapy and an epidural steroid injection shot. I went to a ns that was recommended by several people that I work with. I, like you, have read or heard the bad side of back surgeries, and was quite scared to even think I would have to do it, but it came down to the fact that it was what I had to do. My disc between L5/S1 was collapsed and was sitting on the nerve. :O I had a laminectomy with a posterior lumbar interbody fusion. The pain, numbness and burning tingling I had down both legs is now gone. I do have some numbness in my left leg and foot but it is different and I know from reading and researching that it's something that has to heal up with time too. You have to trust your gut feeling and do what you feel is your best option, and then go into it with a positive attitude.
  • I too have lost all quality of life and i chose surgery sooner rather than later now it's been almost 4 years since i've last worked, I know my surgeons are good, it's just that back surgery is not a for sure thing, and i was really not aware that i may never work again, i have 3 children 7,8,14 and over the last 3 1/2 years or so i've missed a lot. I thought for sure this spinal chord stimulator would be the key to getting my life back, but that was not to be, had in put in oct 06, now getting it removed in nov 08 a total waste, and now they want to do a spinal fusion and i'm so scared of any more surgeries i don't know what to do? I'm not even 34 and i have been using a cane for about a year and the future does not look very bright,and nothing seems to get any better. BUT I WISH YOU ALL THE BEST AND HOPE IT WORKS OUT GREAT FOR BEST OF LUCK!!!
  • Decide whats best for you and roll with it. Only you can know whats best for you.
    From MY personal experience.. I exhausted ALL other treatment options and the last one was surgery. My quality of life now isnt what I want it to be, so I opted to have surgery. I had 2 surgeons evaluate me... and went with the second one. If you have appts with more than one, I think you will know which one is right for you. Do your homework on him and the hospital.
    Good luck with whatever it is you decide!
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