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Is it time?

DedalusDDedalus Posts: 92
edited 06/11/2012 - 8:45 AM in Back Surgery and Neck Surgery
I have always done all I can to avoid surgery and the surgeon and physiatrists have agreed. But after 5yrs of pain and 2.5 years of life robbing, career limiting pain, I am ready to ask for surgery. I just scheduled an appointment with a highly regarded neurosurgeon in the area for July 23.

I am tired of taking over a dozen pills a day and still being in miserable pain. I am tired of missing work and making my family suffer financially. I am tired of not being about to be the father I should be to my children. I am tired of being less of a husband than I once was, from helping around the house to our sex life. But is it right for me to go into this appt specifically seeking surgery? My mind is mulling over anything I can do to make him take things seriously enough to ACT.

Part of it is that I refuse to go to a PM doctor. I do not want more meds. Period. My back problem is not that serious, and it seems crazy to have my life effected so much over something so small. I am young. I look fairly fit. I seem vibrant and lively. I have a hard time complaining to doctors. And I don't know how to accurately describe or rate my pain (the 1-10 scale is insanely subjective; my 4 might be someone else's 9). I think that all of these things conspire to make the doctors think my pain doesn't wreck my life. Well it does and I need something done.

Anyway, does anyone have any insights into when or how you made the decision that you'd had enough and actively sought surgery? And does anyone have any thoughts on how to encourage the doctor to take you seriously and operate?


  • I agree the pain scale is subjective and I hear you about the meds. When you speak to the doctors try focusing more on what you can not do now verses what you used to be able to do. It sounds to me like you have reached a point where your quality of life has suffered to the point where the traditional treatmemts are no longer cutting it for you.

    Just because you are seeking a surgical opinion does not mean you are agreeing to one. I honestly don't think it could hurt to get an opinion or two or three.

    Unfortunately, only you will know when you are ready to take that next step. Only with the knowledge you gain from your doctors and the ability to compare your old life to the life you currently have will you eventually come to a final decision. Even then, it is my guess, you will second guess yourself all the way to the operating table, if that is the choice you and your doctors make. It's normal.

    Good Luck at the surgeon visit. Be honest with him and yourself. Go in with a list of questions and an honest impact in mind of what this condition has done to your current state of being.

    There now, I wasn't much help in making your decision at all was I?
  • It helps to read that I am not totally off base. You validate a lot of my thoughts and feelings and I appreciate it.

    I don't post here just to get factual answers, but to try to gleen some of the collective wisdom that this community has about situations such as I am going through. Just getting basic feedback is a huge help. Example: A few months ago, I was so depressed about my pain and life that I was honestly at risk of doing harm to myself. No one but me knew how bad it as, but I was in a bad place. After some kind and supportive responses to my posts here that basically told me what I already knew, I was able to take the steps I had to to get the treatment I needed. Now I am in a much much much better place emotionally. So thanks to you and all the other kind and knowledgable souls here. Every little bit of support helps.
  • Dedalus,

    Not sure of your exact proposed surgery, however, I can share with you my process.

    About 5 years ago I started having numbness and tingling in my feet/legs. During a physical my primary doctor took an X-ray and said I had a slipped L5/S1 disc and sent me to an orthopedic spine specialist. They put me on Neurontin and started me on physical therapy.

    Physical therapy, combined with the Neurontin seemed to work wonders and I took Tylenol for the pain. For nearly 5 years I went to the gym faithfully, continuing the exercises my PT taught me, and adding some others. Through the process, I dropped about 30 pounds and was feeling great. Until this January when the numbness and tingling really started to hurt. I had a steroid injection in 2008 and they did another this spring. Neither provided relief. My doctor told me in 2005 that at some point I would have to have surgery and it would be up to me.

    In April, we discussed options. My spine doctor also has PM clinic. We discussed options, but he was not a fan of narcotics, and neither was I. We tried increasing the Neurontin, but that just made me loopy. We tried some NSAIDs, no relief. This spring it hurt so bad laying down that I could no longer sleep through the night. It began to wear me down.

    Ultimately, the decision came to the quality of life. I can deal with pain. I can deal with discomfort. I can deal with lifestyle modifications (learning that the gym was my friend, selling my car with a manual transmission because the left foot couldn't properly work the clutch) In the end I could not deal with being unable to sleep and having to function in a working world. I had an L5/S1 fusion a little over a month ago. The recovery is a pain in the butt, however, my legs and feet only hurt occasionally at night. I know that in another 8 weeks I can start PT and I cannot wait to get back in the gym. I've been following this forum for 2 years. I too wondered if my pain was not as bad as others and should I just deal with it. Ultimately, you need to decide, read stories from others, but trust your gut, your family and your doctor.

  • I would tell your surgeon about all your symptoms and how they are limiting your life. Ask him how he can help you.
    The surgeon will have a lot of experience of what he can achieve through surgery, which puts him in a good position to know how much he can help you.
    He sees people with all sorts of different levels of pain and problems.
    If it helps, get another opinion.

    As for rating your pain on a scale, it is 'your' pain that you are rating, so how others would cope with it doesn't really matter. :-) I know that chosing a number to indicate pain levels is hard, and always have trouble with it myself.

    I am posting a link to a discussion that I started earlier in the year, before my fusion. There are a lot of helpful comments, that I hope will help you too.


    I wish you well for your appointment on 23rd and hope that you get the answers that you hope for.

    Do let us know how you get on :-)

  • Your question is so common with spineys. There have been some members, like yourself, that try all conservative measures without success and still avoid surgery, choosing to deal with and work through the pain for years.

    The choice for my ACDF was immediate - my cervical spine was too much of a mess to wait and the radiculopathy was severe in my shoulders and arms. It was a no-brainer - I didn't want to risk being paralyzed with a simple misstep or car accident.

    As for the TLIF, that took me longer to make the decision, but it was recommended by my surgeon after trying all conservative measures.(This was the same surgeon that did my ACDF and I have 100% confidence in him.) I was at a point where standing for more than five minutes put me in horrendous pain, so bad that I had to have a stool in the kitchen just to cut a few vegetables. Turns out, once they got in there, things were worse than they initially thought and my spine was more unstable than he realized. So he was glad it got done when it did.

    I guess what I'm saying is from my perspective, it's quality of life. From your post, it appears that you are suffering so much, not only from pain but emotionally, feeling you're not there for your family. At this point, do you try more conservative treatments with the hope of feeling better? Or do you take the big plunge, go through six months of down time with the hope of feeling better for many years to come?

    It's a tough decision that only you can make. Everybody wants to try all conservative measures before going under the knife, but if there is no success with those treatments, what is the alternative? To me, I'd rather (pardon me here) "S--t and get off the pot" so I can be on my way to a relatively normal life, taking the chance that surgery will make that possible.

    I know that surgery is a last resort, but sometimes it's the only choice. It's scary, I know from experience, but playing with your children and being a good husband comes with a price for us spineys. So how high a price are you willing to pay for the chance of having that back?

    Think carefully about your options and what you want out of your next step. I believe that attitude plays a big part in our recovery, so you need to be emotionally and psychologically ready for whatever next step you're going to take, surgery or otherwise.

    Take care and please keep us posted.
  • The only advice I can give you is to enter your appointment with an open mind. Be honest with the doctor and don't leave anything out. If your doctor believes that surgery will alleviate or at least arrest your problems, they will recommend it.

    I personally never sought to have surgery. I do not make suggestions to my doctors, I let them do their job. My job is to provide as much information to them so when they give me choices they can explain them to me. In other words, be a good patient and be patient cause it may take time to formulate a proper plan.

  • You have gotten some good suggestions. I would just like to add that you may want to get more than one opinion. Sometimes the surgeons with the big reputations can be a bit stingy with their time, and you just might leave the appointment less than satisfied. Try not to base your opinion on whether or not to have surgery based on one experience with one surgeon, if the first one does not answer your questions adequately.

    It is important to find a surgeon that is not only technically competent but who you feel you can trust and can communicate with.

    I remember when I was trying to decide whether to have surgery. I waited and waited, but finally, my life became so compromised, and my world so small that I decided the risk was worth it. My pain was such that I could barely walk or stand any longer, and I was not willing to resort to a wheelchair when I knew there was a procedure out there that could most likely help me.

    I've had this conversation many times with other people and on other forums. Most people seem to reach a point where they just know it is time. You may just be at the beginning of this process. Talking with this surgeon should answer at least some of your questions.
  • Thank you for all the support. I appreciate it all.

    A little more info: I have seen a surgeon before, a year or so ago. At the time, I was mostly wanting to know if there was any need to have surgery or risk to me if I did not. At the time, I had faith that I could handle things with PT, weight loss and meds. The surgeon said that he would not operate based on what he saw in my MRI and x-rays. I was relieved at the time.

    Now, I have been through the PT. I have lost 40lbs. I have had ESIs and I take an embarassing about of pills. Instead of getting better, I have developed high blood pressure (odd considering I lost 40lbs), depression, anxiety and I am still in pain.

    So, when I go to this surgeon, I am coming in with a different attitude. Now I an tired of trying conservative measures and want a "fix." We'll see.
  • Is this a different surgeon you will be seeing?

    Would you mind briefly describing your symptoms? Where is the pars defect? L5-S1?
  • Well it definitely sounds like you've done everything you can and should have done in preparation for whatever may be next for you.
    Congratulations on the weight loss! I've had too many ESIs to count, take more pills than should be allowed by law, and have been through way to many days of PT. Probably a lot of us ready you story can empathize with exactly what you are going through.

    Having said that, no one but you knows how your pain has and is impacting your life. Rating your pain is very subjective and you described it perfectly when you said that your "4" may be someone else's "9". Everytime I get to that portion of the paperwork you'd swear it were an IQ test :) I always used to feel as though I were overstating my pain and what if they don't believe me. That is until my latest really bad herniation and there was no question that the pain was off of their little number chart!

    When I decided to have my first surgery, it took me forever to decide to do it. This second one, however, only took me the amount of time it took me to get a first and second opinion. The reason for that is because I had gotten to a point very similar to what you described in your original post. I was tired of being out of work, feeling like I was putting my family through a financial burden, not being a wife to my husband, or a mother to my children....I got to a point, also like you mentioned, of deep depression. After talking to family, and my doctor, and most importantly my husband, he made me realize that I was seeing things very differently than he was. He knew that this was not something I had chosen, not something that I had control over. He, along with family and friends, also made me realize that we are not alone, whether we decide to have a surgery or not. Reaching out to them, and now here, has been such a blessing.

    No one could make the decision for me when it came to my surgery, but I felt better prepared going into that initial appointment knowing that I was not alone. Whether it be your family, your friends, your children (God bless them!), you are never, ever alone in this fight. And thank heaven for this site and the people here for their unique understanding, sensitivity, empathy, knowledge, and personal histories that they are willing to share, that we are all able to benefit.

    I'm pretty new to this posting stuff, but it has helped me tremendously and I pray that it does you too. Best wishes to you and I have a feeling you will surely make the best and right decision for you! :) :) :)
  • As a spiney reading your post it seems clear to me that you are "at that point". Of course, some people put off having surgery, even when their quality of life is the pits, for their own personal reasons.

    Back surgery is not something to just jump into and you have done an admirable job helping yourself with all of the conservative methods, I applaud you. As others have said, in the end it is really up to you, when you have had enough.

    With my first back problem I tried putting off the surgery, but my quality of life was so bad, the pain so bad, that I knew it was time (L2-L4). When I came to this decision we scheduled the surgery and I had to wait 3 months. I was crying in the office because I wanted it NOW, lol. I couldn't imagine living in agony for another 3 months.

    Live and learn: when the next section of my back fell apart (L4-S1)I didn't wait as long as I knew what I was in for and didn't see any reason to endure a crappy existense when I didn't have to.

    Now, for a year I have know that my neck is also a train wreck (you would think I got hit by a train). Multiple herniations, severe DDD and kyphosis. I am not going to wait until the pain/tingling is unbearable. I am scared of getting into an accident, or falling, and doing irreversible damage due to my unstable mess of a neck. My next appontment we will be discussing how my ALIF recovery is going and what to do and when for my neck.

    Three different scenarios for you. Over the years my surgeon always said to me that the surgery timing was up to me, unless he thought that postponing surgery would cause nerve damage/paralysis, etc.

    As the others have said, only you can decide if your quality of life is that bad. We are here to help and support you. I hope you haven't fallen asleep reading this!!

    Good luck, keep us posted....

  • second self said:
    Is this a different surgeon you will be seeing?

    Would you mind briefly describing your symptoms? Where is the pars defect? L5-S1?
    This is going to be a different surgeon. The other one wasn't the nicest person.
    L5-S1 is the location. It has been there for 20+ years. It showed up when I wrestled in high school. After I stopped wrestling, there was no pain for many years unless I did a lot of bending or repetitive movements.
    The pain in my right buttock started about 5-6 years ago. About 2 years ago the pain changed and started radiating from my lower back to my foot on the right side and occasionally to my thigh on the left. That was also when it changed from intermittant to constant pain. The major pain points are my lumbar, right buttock, right hamstring and right calf. I stretch constantly, but my right hamstring and calf are so tight and painful I have an embarassing limp most of the time.
    The pain is at its worst late in the workday. I wake up due to pain 1-2 times a night normally, but some nights I can't sleep at all. I have a sedentary office job, but have a special chair with adjustable lumbar support and a foot rest for ergonomics. Actually my employer did a full ergonomic study on my cube. LOL
    Last year, walking helped a lot, at least for a few hours after walking. Now, when I try to walk for exercise, my pain worsens and I am more likely to miss work. So I've stopped, which I know is not good. Driving my stick shift car is challenge. If I carry something like a gallon of milk on one side, it just about makes me scream, but if I carry one on each side and balance out the weight, it doesn't hurt more than normal
    Hopefully that gives you enough details. I am bad at knowing what of my many many complaints are worth mentioning.
  • So it seems from reading your posts that you have not been told you need surgery as of yet. Is this correct?

    Whatever you do I would get more then 1 opinion if you are told you need surgery and actually get another opinion even if this well know surgeon doesn't say you need surgery. As you probably know from being on the forum that each surgeon sees things differently and has their own way of doing things. If a second surgeon tells you the same treatment (surgery) is needed then you have your answer and your next job is picking who will do the work. Myself, I would get a third opinion as once you have some structure changed in your lumbar spine there is no going back.

    I am not a believer is waiting to have something fixed. I think people do themselves more harm then good by waiting. While all this gym work seemed to be helping you it may very well have been dragging your back down. Don't take what I just typed as a negative as the exercise part is a very catch 22, in that your damned if you don't and damned if you do. Once you start not being able to function normally on a daily basis its time to get some answers and get something done. The other thing is that you are now 5 years older and age does play a big roll in recovery of any operation.

    I hate the pain scale number system also. Never know how to rate it so as most of us I just take a WAG, short for wild ass guess.

    A lot of well known surgeons will cast you aside after surgery is done. Some tend to get arrogant if their work doesn't totally correct your problem. I am very careful to ask questions about the after surgery care and how meds and other things are going to be handled. Make you list up prior to going to a appointment. You would be wise to have your list ready when you go to this next appointment so if he says you need surgery you can move forward right then and there. Most of us get caught up in a deer in the headlight type fog when we hear we need surgery, even though you might know its coming. Be aware that a lot of surgeons will also paint a rosey picture about how fast you will recover. This may not or may be true so be aware of it.

    I am not a doctor and am speaking of my own experiences so take it for what its worth.

    Good luck.

  • My back injury was work related in April of 2002. I should have had surgery then but I decided to do all conservative treatments out there almost every anti-inflammatory on the market, narcotics, therapy, chiropractic, injections, meditation, massage, I lost over 70 lbs. went back to school and changed jobs for something more sedative. I was running 3 miles a day and was in the best shape of my life (so I thought) until one Sunday morning in June 2008 my back finally gave out for good. Doc said that test showed that the discs had herniated again and I had a tremendous amount of nerve damage in both legs because I could hardly feel them.

    Over those 6 years I had probably 3 to 4 episodes a year of my back giving out. I would be laved out for a week and then I would slowly work my way back to my routine. What I didn’t realize is that these episodes were a warning of things to come. I thought I was doing good exercising, pushing myself getting healthier but I was actually hurting myself every time I went out and ran. My body was telling me something but I was too stubborn to listen.

    My advice to you is listen to your body, and if you decide surgery is what you need than get lots of opinions. I had 6 before I decided to have surgery. Mine was decided quickly because I was falling down all the time and was told that the next time I might not be able to get up. I had ADR and ALIF in 2009. Because I waited, a lot of the nerve damage was irreversible and now spend most of my days on the couch.

    • I am speaking of my own personal experience with a back injury. This information should in no way be construed as medical advice.
  • Only you can decide when it is time. That being said, it sounds like your life is really impacted and I personally would do the surgery. As part of the decision process can I suggest you weigh, the best outcome, the typical outcome and the worst outcome. You need to be sure that IF you get the small percentage of worst outcome that you are still willing to do the surgery. You don't want to kick yourself later with a coulda, shoulda, woulda. I hope it all goes well and you get your life where you want it.

    good luck.
  • I can definately relate to your story. Except I am a female. The 1st time I hurt my back was at work prob. 15 years ago. I was out on workers comp for a while then went back to work. Many years later it just started hurting again.

    I dealt with it hurting for 2 years before I decided to go to a pain clinic. I am a nurse and have seen the stigma put on people that go to clinics as "drug seekers" Even though I knew I wasn't it did stop me from seeking treatment for quite a while.
    Well once I went the pain mgt MD sent me for neurosurg. consult. He told me you need surgery...how soon you need it is up to you..He said trust me..you will know when you are ready..and when you are I can help you.
    Fast forward 4 years..lol..yes I know..Im stubborn and waited...I knew the recovery would suck and suffered because of it.

    As someone else already said...I was missing work...and my quality of life was gone. I didn't want to leave my house or do anything because of the pain. I still worry my husband gets sick of my complaining of pain. When I mention it to him he says "the doctor said it could take up to a year to recover. It has been 4 months..of course you still have pain." Amazes me how understanding he is.

    I had a 2 level posterior fusion of L4-S1 on March 1st of this year. I still take pain meds 3 or 4 times a day and I am still not back to work..but I am improving. Financially I need to get back to work soon but I can't force my body to be ready until I am healed.

    I think you have already made the decision in your own mind. It is normal to 2nd guess yourself, but it sounds to me like you have given it your all to avoid this.

    I wish you luck and hope you make the right decision for you and your family. I hope we all can return to our former lives..even if we just do things a little differently now.

  • Thanks again for all the posts. You all are great!
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