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Help with a decision about Thoracic fusion surgery.

milimememmilimeme Posts: 58
edited 07/20/2015 - 2:17 PM in Back Surgery and Neck Surgery
Hello all, I am new here and hope to get some suggestions whether or not to do fusion surgery. I know that there may be similar posts to mine, I will be reading through what I can find but I wanted to get suggestions based on my own back and whether or not to go ahead with surgery.

Let me start by saying my nightmare started ~6 years ago at age 24 for seemingly no reason at all I just fell apart. I am now a few months away from 30 years old.

The spine surgeon told me I have degenerative disc disease. 6 years ago I had a discogram done (T5-T12) and it showed that I have 4 full thickness radial annular tears (all the way through the annulus) from T5-T8. On the MRI's I had done, T1-T4 looked just as bad. They didn't do discography on T1-T4. If I recall correctly I believe they didn't do it on those discs because the space was too small to get the needle into the disc? I also have bone spurs and some other things going on, I can't recall everything any more.

I am in a lot of pain most of the time I have been coping (unhappily). In the beginning I was in excruciating pain for about a year and slowly I must have adjusted to the pain. I literally stopped doing everything I enjoyed to cut down my pain, that probably helped the most. I have done nothing but sit or lay around all day and have had no life for the past 6 years. I haven't even been with a woman in that time, that's how bad it is.

I finally got sick of doing that or living this boring life... I started to get out a bit more slowly and was doing ok but obviously was in more pain. A cute gal asked me to play volleyball and I was stupid and said sure... Well I am back to the beginning in some of the worst pain of my life.

I have also been getting a lot of popping in the T5-T8 region. Most of my pain also resides there though I do have flare ups in my upper thoracic area as well.

I spoke with my spine surgeon several times over the course of the first year (6 years ago), he told me he was 70% certain he could fix most of my pain by fusing T5-T8. He said he would need to do 2 surgeries (2 discs at a time then recovery).

He suggested that due to my young age I wait as long as possible because the discs above and below will wear out more quickly. He had me meet with 4 patients that had similar surgeries done and at that time, 3/4 agreed and told me to wait. 1 of them told me not to do it at all, he was in his 40's and had all of his thoracic fused. His issue started about the same where he had 5 discs fused and that lead to more surgeries over 15 years...

My problem is this: I want to be able to enjoy life... I can not and will not live the sedentary sitting/laying around life anymore. I would honestly rather be 6 feet under. I have been very depressed, lonely, and I would even say suicidal...

If I have surgery, will I be able to do the things I enjoy? I used to be very in to sports. Can I play volleyball or will that be too hard on my fused back and the hardware inside? Would it be risky to play sports with a fused back?

For those of you that have had your thoracic back fused, would you recommend I do the surgery or wait it out? How has your life been since you had your fusion surgery?

I know this is long, I just really need support because lately my thoughts are not good, I really do not want to make it to my 30th. I have been binge drinking which is not helping...

I did start taking Lyrica about a week ago which hasn't helped yet. 75mg twice a day... I had bad side effects with gabapentin (neurontin) which I was on 6 years ago for about 6 months: 1200mg, 3 times a day for a total of 3600mg. The side effects I had were: extreme memory loss and forgetfulness, and extreme anger. So far with Lyrica I just feel intoxicated, the memory loss is not as bad but the dosage is still low.

I hope I posted this in the correct location and I know this is a lot of info... I hope you are all having a better day than myself. Thanks for your responses. I really do appreciate every post. You people with similar situations truly understand.

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  • Big Decision. Have you sought a second opinion? I am thinking that with another scan to look at the progression of the area, it will tell you what your answer should be. Its not an easy one for sure. It also will not take all the pain away. You could be in as much pain as you are now or it could be more/less. Whether or not you will be able to play volleyball or other sports would have to be answered by your doctor.
    I haven't had my thoracic back fused. I had C5/C6 in my neck fused. I have pain from the base of my skull to my mid-back(trying to figure all this out yet). It didn't start that way. It has progressed that way over the last couple of months. I had my surgery last September. It keeps me from doing things that I love doing but at the same time, I refuse to let it keep me from doing everything. Of course though I am on a boatload of medications throughout the day to keep me upright and functioning but even those fail me.
    I know I couldn't answer your questions. This is a question only you can answer. I know all this pain is depressing. If you are considering suicide or are just plain depressed which is common with chronic pain, please call a suicide hotline or talk to your doctor. They need to be helping your body and your mind.
    Tracie C
  • Thanks for your response, I really do appreciate any words at all. We who suffer can relate and understand. Family is good but they don't know what it is like so they can't relate... It really is a tough decision. I did have a second opinion initially 6 years ago. The second opinion was basically the same thing, wait it out until I can not tolerate the pain or I lose feeling etc... The second surgeon told me to try a few exercises which I did for a year and those only made my pain worse.

    I have been seeing a doctor recently (since my volleyball incident). I have thought about ending it. I am too much of a coward to do it, at least I think I am. I have Vicodin for break through pain, I am not a fan of opiates (they make me feel sick) but it helps more than most other things. I sleep only about 3 hours a night which sucks...

    I agree, I should probably have another MRI done, actually the spine surgeon told me to do a standing MRI since my pain goes down a lot when laying down, standing or in a vertical position hurts all the time. The problem is my resources are very minimal, I do work and have insurance but MRI's will still cost me ~$500 out of pocket. That means I will have to skip paying my $700 a month college loans for a month...
  • I have never seen a psychologist, but I have been giving that a lot of thought. Any thoughts on that? I do feel better after venting my frustrations with life. I know everyone has problems but I seem to be at the top of the list at the moment, at least from my perspective. Maybe a shrink would help?
  • SavageSavage United StatesPosts: 5,476
    I saw a psychiatrist and received meds for my depression.
    I also, did talk therapy. Later, I found therapist who also specialized with the chronic pain.
    She worked out best for me. I saw her weekly, about three months and my head..thinking has never felt better.
    It been about three years now, now suiciadal ideations, no flicker through my mind of wanting to leave this world.
    I'm so glad I reached out for help.

    During my darkest times, I would have suicide hotline program into phone.
    I would call day or night and vent ..or say whatever I felt. I would call and listen to the feedback.
    No one really said any revelations...but it did feel better for a time to just talk about what I'm going through.

    When you see your doctor, I would include your feelings along with any kind of other symptoms you have.
    There are some meds that help pain and depression and successful for some people.

    In the meantime, if you need it, here are SH hotlines numbers. There are more numbers for more international locations.
    USA: 1-800-784-2433
    UK : 08457 90 90 90
    ROI: 1850 60 90 90

    Depression often accompanies chronic pain, but should never be accepted as normal.
    Wish you very best! Please keep us posted with how you're doing!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I did speak to my doctor about my depression, he wanted to start me on Cymbalta. I had been on anti-depressants before and I really don't ever want to go on them again. I am really hoping that Lyrica will help with my pain which will ultimately help with my depression. I appreciate the hot lines. I haven't called one yet but I probably should have at least twice. I think talking to a psychiatrist may be the best option over more meds. It does feel good to vent...
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    edited 07/20/2015 - 9:45 AM
    So I have not had thoracic surgury, but our stories are similar in many ways: My thoracic pain began at 24 ( from injury herniated T67 disc ), I eventually had discogram that revealed tears from T5-T8, but not all provoked pain. Surgury was canceled and we targeted tear with ESI and my pain healed 85-90 percent and has now for years. My tear was main pain generator so if i would have had surgury on herniation it would have most likely failed. Thats the high level. All my popping in area went away after injection

    Two of the most important things I learned about thoracic surgury:

    * People may compare their surguries and they are trying to help , but never use cervical or lumbar surgury to compare to thoracic. It is much less done , has longer recovery times, can result in more complications and many other things depending on type of surgury it its there
    * Only let a doctor very experienced in thoracic surgury do the surgury

    Also, one benefit of thoracic is that the wear of discs above and below is slowed by stability of the ribs. I exhausted every option twice before I was ready for surgury.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • I have tried ESI twice and unfortunately the only relief I had was from the 2ish hours of lidocaine. It was actually the first time I had ~0 pain in my back, it was heaven on earth at that moment. My T8 area seems to be the worst for pain. I may have to try epidurals again at some point. I definitely agree, the areas of the back can not be compared. Thoracic is tougher with wear and tear as you mention thanks to other supporting structures.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    was the ESI put next to tear?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Indeed, the ESI's were put next to the tears. A few times they put them further out in a different space (I forget the correct name for this space) . The only time I really noticed a difference was when T8 was done near the tear and that was the lidocaine that worked for ~2 hours or so. Surgery may not help? Thanks again for your replies.
  • Milimeme, welcome. I just had lumbar reconstruction and my thoracic comes next. Depression should not be self suffered, so get to a psychiatrist today. They can prescribe and also are expert in cognitive therapies. I am.on cymbalta which helps my nerve pain but has little to no effect on my anxiety and depression. Everyone is unique. Be diligent until the right meds for you are found. Sure you may feel tired and sure your sex life might slow down a bit but consider this a short term deal.Once some relief in back symptoms comes your way the depression meds may no longer be required. I have had good luck with psychiatrist as they are doctors and can prescribe. Look after your mind first and the nerves and bones will get attention in due course .

    May 13, 2015. L4/L5
    2X bilateral lam
    2X s. process removed
    2X lumbar sten
    1X discotomy
    1X synovial cystectomy
    4X f. joint modifications
    4X foramenotomies
    1X spondylolisthesis
    1X bilateral post. Llumbar fusion
    1X instrumented fixation
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    edited 07/21/2015 - 3:10 AM
    Surgury very well may work, in my case it would not have cause we were targeting something that was not main pain generator. Did all the discograms that revealed tears provoke pain? Was one worse than others?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    You have to take into consideration that the other discs may exhibit pain because a needle is pressureing them up through the tear, but like mine I had no doubt which one cause majority of my pain. It was horrible and locked up my vocal cords when I tried to scream. I think with the injection at that level working you have some good information at hand.
    Dude, sex is something you should not live without, thats a normal part of life. I know you put a smily face but i am sure that devestates you. Keep pushing man and trying to get better.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • It really is bad going without sex. I just have become so introverted and lost all confidence. After all what gal would want a guy that canbhardly take out the trash? I also have something called hidradenitis supurativa. That's life long as well. I am pretty far down at the moment... I really don't think my social situation will ever improve. I used to be popular with the ladies but I have fallen out. I'll try to keep my head up as much as possible but I just don't know about my future.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Its very understandable, its easier to pull inside when the people around you seem so happy and that life is going well or that you just dont want to expose yourself to things you used to love out of self preservation. Ive been there and still am. Confidence............. I used to have such confidence in my mind and body, but pain changes that. Its hard to believe when i look back I was the person who my family looked at as the rock , always one of the hardest workers at my jobs, and someome just so adventerous. I dont know that person anymore sadly. But I keep hoping it wont be this way forever and thats what keeps me going.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • You hit it right on... I live with my brother who is a year older and has a great life, no pain, wonderful beautiful girl friend. I am totally jealous and never used to be that type of person. I used to be the guy with that life... I used to be extremely active in sports and lifting etc... It actually makes me more depressed seeing them having fun and knowing I can not. I just don't know how long I can do it... Surgery scares me to death, what if it gets worse? Life really has become misery for me. For my depression I may try Tianeptine out of suggestion by a friend, no idea if it will help. I won't ever go back on Celexa which I took for a few years, really bad side effects. Cymbalta was suggested by the doctor but I don't like the brain zaps associated with anti-depressants when you miss a dose.

    I just don't know anymore.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Yea man don't be to hard on yourself, I wasn't envious a day in my life before pain because if I wanted something I worked hard and achieved it. Now envy cause I cant is such an issue and I really hate it. This life is tough and full of loss/regret, I'm 11 years in and I still have not figured out how to deal with the acceptance and admittance that I can't do or will never do. I wish I had better advice
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • You have me beat with 11 years in... It is tough. I really feel as though finding a gal would really benefit my mood. However I just never have the energy nor the will power to go out anymore... I guess for now I will keep throwing drugs at both the physical and mental problems associated with my chronic pain.

    For me it is really insane to think about how much pain has changed my life and how I don't "look" broken but truly can hardly move.

    I have had broken bones that held me back far less than my back pain... I'll have to join you in the wish that in the future we will rise once again out of pain. At the moment, I can't even remember what it was like to be pain free. I have tolerable days at best.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    same here brother, I truly never could have forseen what an impact chronic pain has had on my life. I cant think of one thing its made better for me personally. Ive had several surguries and nothing touches chronic pain impact on life. Sorry you are going through this stuff and wish you the best. Having a gal does help, but it also produces huge guilt so its a double edged sword. No easy answers in this but we need people in our life as humans
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • milimememmilimeme Posts: 58
    edited 07/22/2015 - 8:32 AM
    I will definitely see a psychiatrist. My sex life is 0 anyway and has been for years. I used to be an extrovert and get all the ladies ;) but now I am completely introverted and have lost all confidence... I'd be scared I'd break myself doing the deed anyway or for certain I'd suffer for a few weeks...

    Autonomic: I had pain from all discs T5-T8, however T8 was about 10 times worse. The pain from T5,T6,T7 was bad but I would say it was just above my tolerable level.
    T8 however brought tears to my eyes it was that bad. Having the needle inserted through my back into the disc seemed like a walk in the park or a mosquito bite by comparison. I do believe that T8 causes most of my daily pain of not all of it since the one ESI injected near the tear at T8 relieved most of my pain nearly instantly when the lidocaine was injected.

  • Are there chronic pain groups similar to AA? I haven't looked yet but I think support groups might be a good thing.
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