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Lonely beyond words

Before you begin reading, this is a long post but I just need to get this out, and hopefully speak to people who are in the same position.

Hiiii...My name is Ashlie, I'm 23 years old and have had a severely damaged spine since I was 10 years old. First I had a sudden infection in my discs called Discitus. (Same as Meningitis but in the discs)
I could walk in small stages but after I had my first ever MRI scan, I came out it not being able to walk..for the next 11years!! I was told I'd never walk again by doctors, but being a stubborn as I am, I wanted to prove to myself and the doctors that they were wrong. It took me a long time but I did it! Been walking for two years now, although I do still have to use crutches quite often when I struggle to walk.
So to cut a long strong short, I spent the next 13 years being told by doctors that the constant pain I felt every second of every day was in my head.(as they had treated the initial infection when I was first admitted). But I knew this wasn't true and that the pain I was experiencing was extremely real. I refused to accept this and never stopped fighting to see doctor after doctor. Finally in March 2014, 13 years after he told me I was making it up, I saw that very same surgeon again. He didn't even examine me! He pulled all of my scans up on his computer and immediately told me exactly what was wrong with my spine. I was told that every single disc in my spine was either slipped, bulging, all are very dehydrated and some are crumbling. He then went on to tell me that I have a deformed Sacrum (which causes extreme constant pain in my legs, groin, knees & ankles) and said I have the spine of a 70 year old woman at the age of 22. He then went onto explain that as my spine was so severely damaged that no surgeon in the country would operate and that I'd have to manage on painkillers for the rest of my life. Again, I refused to accept this so I contacted my GP and asked her to refer me to another hospital. (This is the good part!!...) I received a letter a few days ago, telling me that I'd been referred and that I'd be seeing a new spinal surgeon soon! Of course I'm absolutely over the moon at the thought of this. So I'd urge you guys, if your feeling like giving up and letting your pain/condition beat you...STOP AND THINK AGAIN! You don't want to live the rest of your life like this! So please, CARRY ON FIGHTING!!
Although this new surgeon might not even be able to operate on me, I have hope until he says that, and if he does say that, I'll be straight onto my GP asking for yet ANOTHER referral. And I won't stop until something is done to manage my pain.
I'm fed up of my boyfriend having to literally carry me to the toilet, getting me dressed, and everything else he has to do when I can't move. It isn't fair on him, and it isn't fair on my mental state. So I will carry on fighting for as long as it takes. I've seen every doctor you could possibly think of in the last 13 years and I'll carry on until someone helps me.

What also comes with all of these problems are feeling sad, depressed, incredible alone, insecure, worthless, and so on.
So I'd like to say if anyone has anything like me, and is feeling alone and scared, like me, then I'm here to talk, support and help in anyway I can with a listening ear. People who don't suffer the way we do, they don't understand the exact extent of what we have to go through every second of every day. So if your in the same boat as me feel free to send a private message and I'll get back to you. I hate feeling alone in this, like I'm constantly fighting a battle I know I won't win. Luckily I have a very supportive boyfriend who is my rock and he,so and supports me through absolutely everything I'm going through. I hope all you guys have someone supportive to help you, if not I'm always here's to listen.
Sorry for essay!! Haha
Hopefully speak soon


  • Good for you Ashlie! I'm smiling reading your story. You seem to have a positive attitude despite all the pain you've been dealing with all these years. That is rare. Hold onto it. Or bottle it up to keep handy on those tough days. I see a lot of similarities between you and a close friend of mine that I met on this forum. Positivity. It is better than any drug or treatment. It can help you get through those times when other doctors won't touch you with a ten foot pole. Keep it up!
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • My spinal surgeon also thinks my initial 'injury' was discitis. Don't know when it would have happened, but possibly when I was deathly ill with sepsis from a ruptured appendix. Doesn't matter now, though. I hope you have some luck finding a pathway to better days.
    2015: Thoracic protrusions C7-T1, T3-4, T6-8
    Dec'13: 360FusionL4-S1 w/bone graft
    2013: 3x2-level disc injections: 12mo surgery postponement
    Dec'12: DiscogramL4-S1
    Sep/Oct'12: Bi-lateral Rhizo AblationsL4- S1
  • Thankyou for your message Sarah! Made me smile. Although I'm not always positive, I have my bad days where I want to give up but I know it isn't an option so I just pick myself up and carry on. I really hope that your friend gets better very soon, and tell her from me she's doing an amazing job and to keep her chin up and smile. :)
  • Ashliee1991AAshliee1991 Posts: 6
    edited 01/16/2015 - 2:02 PM
    Ooh I'm sorry I didn't realise you also had a spine problem! I've never met/spoken to another person who has even heard of Discitis, let alone had it as well! I wish u all the luck in the world!
  • Hi

    I read your post, and am amazed at how positive your attitude is. It's something anybody who on here can learn from.

    I am a triple fusion failed back surgery syndrome ...now ChronicPain patient.

    I had your attitude till about a year ago. The first surgery was done by a poor surgeon who skipped basic pre diagnostics (found this out after) and did an L5S1 TLIF on me. Now had he done the diagnostics he would have known he fused me to another bad disc and the one above it was also burst, thus known my next 13 months was not about 'seeking' but about being in real pain.

    Fast forward, new neurosurgeon, new place, highly rated, looks at my MRI and films and tells me in the first 5min I'm not fused at all (unlike old surgeon and his supposedly smart peers).

    New surgeon won't touch me either (I almost crumbled) ...but only until I had a discogram!

    In other words, proper diagnostics ;-)

    A disco hurts like living hell. No pain control allowed and compressed contrast dye being shot into your discs while awake, but in my nonProfesional humble opinion if anybody has surgery without a discogram, first, they are not thinking straight.

    Anyhow, the two other discs (L4L5 & L3L4) were burst and leaked into my spinal cord cavity / dural space. I watched it right on the monitor.

    Anyhow they did the surgery in 2 parts to try and fix doctor Frankenstein's (1st surgeons) work or "poor skill" as it was called.

    He used too much BMP, he fused to two bad levels, it was a mess in there.

    Anyhow even after fixed too much time and damage had been done and my surgeries were not MIS, so I have a ton of scar tissue (family trait) and my body dislikes metal*. So I'm a ChronicPain patient now.

    But like you said and posted, attitude is everything. I did well for a bit, but life, work (yup during the whole time between surgery 1 and 2/3 to fix it). I held out hope. Meds just left me feeling unable to work so I kept them very low, thus more pain. I have a family and mortgage, I need to work. But the 'anger' and 'depression' of ChronicPain can get very dark at times.

    I did good the summer after surgery 2/3, working, getting better a tad, had an experimental pain med work wonders. But then came winter and I'm in a northern climate. That and med quit on me and now they know it does for some. The 'Honeymoon' phase they call it now. Anyhow, with that quitting on me, winter cold, and poor support at home, and admittedly my depression and anger about it and the pain, I just spiraled.

    It was bad till the following spring, but a 2nd med change brought on extrem tiredness and threatened my working as such. It was also a period where getting doctors to actually do their homework and God forbid touch you during a diagnosis was really bad. They all just see all the hardware and a ChronicPain patient and walk away if not run.

    So I went into a really deep depressed funk. I even avoided here to try and not be a Spiney, but to try and just be a person. It was more hiding though.

    But last Dec I was encouraged to try PRP to try and break up the scar tissue in my back. It really seems to be helping., and I tried and will try anything once to avoid more pharma or increased pharma. I was dry needling before, for example.

    But PRP seemed to give me another lease on life, that and oddly a different and much lower strength break through med brought me better results. It does only 'so so' at pain relief, but takes the anger our of pain and gives one a tad of a push, as it touches norepinephrine as well.

    So PRP, that, weight loss (60lbs) and a 'come to Jesus meeting at home' and all is slowly turning around.

    I say all this as a triple level is a lot of stuff in a spine, thus because that's what I have, I am always impressed, find admiration, and am inspired by those who have a bigger challenges than I (a triple is a lot of work when it's done over three surgeries) who have a better attitude, than I.

    But I hear you loud and clear, we all have 'Those Days'. I have a friend with horribly painful Chronic Lyme disease. She is one of the few that gets my situation. Nobody else in my life really does, and there are no ChronicPain patient groups (in person) near me that I can find. Wish there was, but there is not, oh well, I'll keep moving on...

    Last, to anybody else reading as well, meditation is a great tool for life, and if your post op, or need surgery, start learning now, as stress reduction is going to be your new best friend after, and work and life will twist your back muscles pretty bad and there will be no more 'A few beers after a day like that' if your on meds and for the novice, any small sunshine the meds may bring you at first fades fast. That's why we are all on bare min, to keep tolerance low, and to keep addiction off the table, but even Tylenol, ibuprofen or things like Meloxicam will do a number on your liver. I stopped purely and only because of that. To be good to my body. Anyhow, meditation and understanding the brains neuro-plasticity are good topics to read up on, now.

    Anyhow, thanks for inspiring me to stay inspired further, and we all need to vent and to share strategies that help each other. I do not belive in reinventing the wheel or seeing others do it. I've tried most everything from PT, Rolfing, Surgery, Dry Needling, Behavioral Theraphy for ChronicPain, Meditation, and now PRP. I don't know nearly what some know, but I'm willing to share what I have learned by living through it, with anybody.

    Anyhow Ashliee, good luck with finding the right person / surgeon and never give up. If your surgery is going to be a challenge maybe start looking into JohnHopkins, Stanford, MA Gen/Boston/Cleveland and other top teaching places as they are more likely to take an honest look at your films and also be up to the challenge, IMHO.

    Jun 2011 -TLIF @L5-S1
    Mar 2012 -NonUnion @L5S1
    May 2012 -Multi Level Discography
    July 2012 -XLIF 2Cages @L3L4/L4L5
    Aug 2012 -All New Hardware @L34L45/L4L5/L5S1
    Mar 2013 -FBSS = Pain Management until they figure it out.
  • jlrfryejjlrfrye ohioPosts: 1,110
    edited 01/17/2015 - 1:40 AM
    I also had discitis, which every Dr would not run any test just saying it was my spine issues I went to my family Dr and told him I am dying here, I know I am this is not normal what is going on, extreme weight loss., extreme pain and I refused to leave his office until he either admitted me to the hospital or started running test. He had a Nuclear bone scan done that showed discitis and osteomylitis. I never heard from my Dr so I went and got the report myself. After reading the report I called my Dr and he tells me that doesn't mean anything but I will send you to a surgeon to ease your mind. It took a month to get into the Dr. When I went to the surgeons appointment he himself came out to the waiting room and asked me to come to the desk, he asked why I was here. My answer well because my dr sent me. He proceeded to tell me that he could not help me here and that he was admitting me to the hospital and would be there later for evaluation. 7 weeks of IV antibiotics and after biopsy of the type of infection another antibiotic was added along with the other. Then followed by one year oral antibiotics. So I understand your pain. It is a horrible thing to go thru. I understand your feelings. Dont give up, once after all antibiotics were finished I did find a surgeon who would operate. Many others would not touch me. This surgeon gave me back my life. Although I am still in pain it is controlled with pain medication and will more then likely be on them for the rest of my life. I am able to work a full time job, although it is not easy I like you do not want to give up. After 8 spine surgeries there are days that I say I cant take this anymore and i need to retire , then I tell myself I made it thru today so I can make it thru tomorrow. As I write this I am dealing with failed back surgery ( my own fault, doing things I shouldn't of, my mother was dying and needed lifted for everything) . Point being I am not giving up, just like you. Don't ever give up on finding a surgeon that will help you, someone will. It is just finding that surgeon. Have you tried the major hospitals like Cleveland clinic or one like that in your area. Good luck and if you ever need someone to talk to that has been thru the same thing, I am right here, We both have been thru some very frustrating issues
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    "I spent the next 13 years being told by doctors that the constant pain I felt every second of every day was in my head.(as they had treated the initial infection when I was first admitted). But I knew this wasn't true and that the pain I was experiencing was extremely real. I refused to accept this and never stopped fighting to see doctor after doctor."

    Ashliee , that is an amazing story of preserverence. It is far to often this same scenerio is seen, that is why advocating for yourself is the only way. To often people suffer because they leave their entire life up to their doctor who may or may not be treating/diagnosising them correctly, you have to know when to take things into your own hands and move on for yourself. I always say the doctor is not losing sleep or crying because he missed a diagnosis or another doctor found a better way to manage pain or treat problem. When it comes to not common diagnosis I have been shocked at the doctors not equipped to deal with something hard to find or treat. 90 percent of the many, many doctors I have seen have either not heard of or treated a single patient with my issues so it can get lonely.
    I fully agree with everyone saying that seek out the major teaching hospitals when a difficult case presents itself, I had to and my only regret is I would have done it sooner. I congratulate you for pushing through when you felt the doctor was not giving you the best option at getting better and were losing hope. You know your body best and you are your best chance at beating this.
    When you do find that "right' doctor its the most obvious thing you can ever imagine and you will wonder why all doctors are not this way. They will be educated in your condition, set a plan of action, approach everything like a detective, they will push for you to have hope and a managed condition and they will be compasionate. I heard the "in your head also" and when I got to the right doctor she said " those symptoms are only considered in your head if you are a doctor not trained in what your condition is, and I am well trained in it " BOOM !!!
    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.
  • jlrfryejjlrfrye ohioPosts: 1,110
    edited 02/12/2015 - 8:01 PM
    I know the feeling of loneliness, I felt there was more to life then I was getting even though I tried many different things, Then I became a dog rescuer, this gave me a purpose, I became involved with a rescue group that was well aware of my medical situations so I was given easy dogs that really only required love and to learn that a human is not always a bad person. I cannot tell you the joy this has brought to me life. Matter of fact my first foster is now my dog, he became so bonded with me that it was only right he stayed here. They tried to adopt him to another family but it did not work out he wanted to be home, my home. Where he felt safe and loved for the first time in his life. As I am writing this he is sitting on my lap with his head on my shoulder snoring. I cannot tell you the joy the process of fostering has given me, It made me feel useful once again in my life. I was making a difference.
  • I think that's great that you are a fighter. It does get very lonely when you're in your situation I am 42 years old and I took life for granted and never thought this would happen to me in 4 years ago I had a severe spinal injury in which I have had several surgeries and now I have a pain pump implanted with fentanyl as my medication. It helped me tremendously with the pain I don't know if it's something you look into or not the spinal cord stimulator did not work for me. I am a man it is hard to find good men out there if I have always been one of them good men. Be very fortunate that you have a boyfriend that does all that for you cuz not many guys would keep saying your prayers and working hard as you probably don't realize it but you have inspired people.
  • it also took me years to convince doctors that it wasn't all in my head. I probably spent over 20 years trying to convince them that I wasn't faking it. Sometimes it pays to be stubborn. I also, back in the late 70's, early 80's had a stupid doctor convince me that my breasts were too big and that was the cause of the problem. So I had reduction surgery. It helped a little, very little. years later I finally convinced someone to do an Xray and/or an MRI and it was discovered that I had an extra set of ribs, causing thoracic outlet syndrome. and of course by the time they discovered it, the damage was done.

    But, I understand the feeling lonely, (even with a boyfriend) because you can't do all the things that you want, like going to the movies, or a concert or a soccer game. it's too painful. And when people at work talk about their lives and all the fun things they get to do, it's hard to relate. But on the other hand, I don't want to talk about my pain all day long either.

    But the thing is not to give up and find ways to deal with everything
  • TuwongTTuwong Posts: 2
    edited 08/03/2015 - 9:11 PM
    Hello, I have chronic pain too, I cry everyday, a few times I day. I try to be strong but the pain is just so bad.
    I try to stay positive, but sometimes it's really hard.
    However, one of my fav quotes that I wanted to share is
    "If you struggle, struggle victoriously"
    So that is what I am trying to do. I am disabled and can no longer work, I was born with spinal bifida and was never suppose to walk either, but I did. But as I got older, my 30's things got worse, and now at 44 I can only sit and walk for very short periods. I have extreme pain in lower back and legs. I also have tethered cord syndrome, fused spine really don't understand what that is at all, split spinal cord, scoliosis, and pinched nerves, bulging disk, not sure if I spelled that right, degenerative arthritis of the spine, my legs are different lengths, but unnoticeable, and a club foot. I don't know how I'm suppose to clean, cook, laundry, etc. my Medicare is making me a power wheelchair instead of my manual one, but it hurts to sit. I am looking for help in FL. It's hard to find any Drs who know about my condition.
    Much love to all!
    Michelle Zimmer
  • I also have been dealing with bouts of depression over my injuries. I have 8 Herniations which doesn't compare to some of the issues I've seen on these forums, but up until I found this site I always felt so alone in this. My wife and family are supportive, but they just don't quite 'get it'. I'm 37 and have had back issues since I was 22. I just today got put out of work until my doctors figure out what we are doing. My work couldn't afford to allow some walking liability to keep working. They did it for my own good because I'm too stubborn to ask for help myself. I refused to admit that I couldn't physically do my job any longer. I'm not a quitter. Unfortunately, my body disagrees. It has given up on me so I have no choice in the matter any longer. If you've been there you know how disheartening that can be. 16 years with the company and here they are shoving you out the door. But in reality they are doing it for your own good. You just can't quite see that.
    Feelings of anger, guilt, betrayal, overwhelming sadness, and rage are pretty common in people with debilitating diseases, in my experience. And it creates this vortex of responses to pain. Pain hits, Anger. Pain hits, Sadness. So on. Learning to accept that what is happening to you isn't your fault is paramount to your health. You didn't go jumping off a cliff without a parachute. This just happened to you. And as much as it sucks, that's reality.
    You got to keep your chin up. There will be dark days, but those should help you appreciate the bright days even more. I wish for all the best to all of you. Please feel free to PM me if you ever need to talk. Good luck all, keep the faith and keep on fighting.
    Herniations T3/T4, T4/T/5, T5/T6, T6/T7
    L2/L3, L3/L4, L4/L5, L5/S1
    Surgery to correct in 2005, reinjured 2012
    Zero stability or movement in base of spine. Impingement on both sides of spine, with varying pain/numbness on both sides.
  • I'm so happy you shared your story, it feels the same as mine but it also makes me feel bad for complaining. I know there are other people out there with stories worse than mine but I also feel like mine is just as bad but there is where I feel the guilt! I've had terrible back pain for about 15 years now that has just got worse over the years and spread to my hips down my legs to the bottom of my feet. I lived through the pain for at least 10 years before it got so bad I finally broke down and seriously saw alot of different drs about it. Before that I just thought it was female related and saw my GYN regularly! Other than that that I had 4 small children and a husband to take care of I didn't have time for drs! Finally my GYN said I had kidney stones and I thought hey that's it! I'm cured! But that Dr just ended up being a jerk saying I was looking for drugs! Yes I was for the stinkin pain I was in while I passed those things! They really hurt and I was having them all the time! Next Dr, said I had a kidney disease that I would be producing stones and having them often for the rest of my life! Great! That Dr also had a problem giving me meds for when I passed them. Next Dr told me again while passing then in his office I was just a pill seeker, this Dr was in the same practice as the 1st Dr who said this, next day my husband came home to me talking crazy and my GYN who I also went to see BC the other Dr was so awful called and told him I had an awful infection and get me to the ER right away. I ended up with sepsis and kidney failure due to a blocked stone. The almost lost me in the ER. I was in the ICU for the 3 weeks. Sorry to go on so long!! After this I was diagnosed with chronic fatigue syndrome, chronic pain( I had started seeing a back specialist by then) he said I had degenerative disc, bulging disc, falso had fibromyalgia, etc and recently been diagnosed with hypothyroidism. It takes along time to get over sepsis sometimes as long as 2 years. I still feel like I'm not over it ,its been 5 years. I spend 99% of my time in the bed BC I'm in so much pain when I stand and I swell up so bad. I'm in constant pain!! My few close friends I had were there besides me at first then just left. I guess they were tirme of asking how I was? I don't know. It was hard not to talk about, it was what I was dealing with and they were asking! I feel guilty over not being able to go see my boys play football cause its too hot and it makes me sick to be in the heat, I can't help my husband with driving the kids to school, or do things around the house, or go to parent meetings,or make dinner! It makes me so depressed that I'm not the mother I was to my kids a few years ago and that they deserve. I sometimes wish I had died that day, that it might have been better for them. I hate thinking this way and trust me its only on bad days that I feel like this. I'm usually a very happy person considering. My husband is very supportive as well but I don't like to dump on him BC I worry he will have had enough one day too and it scares me. I've had several drs say they won't operate on me so right now I just live with knowing I'm going to have pain for the rest of my life, and the meds that don't really work and that I hate to take. I even try not taking them that much and just bear it but then I think I shouldn't suffer like this, even though I really do anyway. I just feel like my pain is so trivial to what some others go through, like I could be gone and not see my kids grow up or have cancer or something terrible like that. In many ways I'm lucky and should thank God! I just needed to vent I guess to someone who would at least understand a little bit of what I feel even if someone has a positive attitude alot more if the time than someone else, or someone who needs to get their good attitude back and thank the Lord for what they have been given!! We should all stick together when we need a little encouragement and some love!! Sorry so long and stay positive and well!
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