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  • Newbie - L4-L5, L5-S1 -Pain for 2+ years - Positive Disco-gram - HELP!

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    Old 03-26-2011, 06:37 PM   #1
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    Newbie - L4-L5, L5-S1 -Pain for 2+ years - Positive Disco-gram - HELP!

    Hi, thank you for taking the time to read my situation. Any suggestions you have would be greatly appreciated. I had a strong back my whole life, I played hockey from 13 until the accident in 12/2008 and my back had always been strong. I was turning on a green arrow when a driver ran the light and hit me just left of center, pretty much head on. At first I was optimistic, I had been through two knee surgeries while in the Army and rehabbed them with hard work. I was in bad shape but not hopeless. Went to physical therapy and got through the wiplash as well as some other sore spots, but could not get relief for my lower back. My MRI's didn't show anything specific so I continued with PT until I saw a pain specialist last year who recommended injections. When they failed, I pleaded with him, I needed to know what was going on. My pain was affecting every part of my life. My marriage was suffering, my status as a student was in jeopardy, and my future career as a teacher was looking less possible.

    The doctor did a disco-gram. He said that the purpose was to try to re-create the pain, if you find the source it will cause the same pain. He started at L3-L4, it was uncomfortable but not painful. The X-ray showed no leakage and he proceeded to L4-L5. As soon as he injected it, the pain in my lower back on the right side(maybe 3-4 inches above my hip) was very intense. It was the exact pain that I had been complaining about since the accident, radiating down into my right hip. The X-ray showed leakage and the pressure did not stay constant. The pain was so bad I asked him to pause before he started the next injection.

    I gave him the go ahead for L5-S1 and it was by far the most painful thing I have ever experienced in my life. It re-created the exact pain in my lower back on the left side that had been troubling me since the accident. I could hardly stay still, the pain was so intense. He monitored the screen to see if there was leakage and there was. So two positives at L4-L5 and L5-S1. I hoped that something good would come out of identifying the cause of the pain, but to this point, almost a year later, I am still without any relief.

    It took about 2 months for the pain to resolve from the discogram.

    I had been on Fentanyl patches for over a year, now am on suboxone patches. The fentanyl was much stronger, but it affected my cognitive functioning so I had to make a change.

    I saw a back surgeon shortly after the disco-gram and he said he would do fusion, but did not feel comfortable with any other procedures. I really don't want to get a fusion, it scares me since it is irreversible and what if it doesn't actually fix my pain? I have maintained good flexibility and can still touch my toes with limited pain. It hurts when I come back up, but the stretch itself feels good.

    I saw another surgeon last month and he said "If you were my brother I wouldn't recommend fusion." I take that as a warning. He said he couldn't see anything on the MRI though and sent me for another one. This MRI looks clear too and I am worried, what if they can't see it? What type of imaging doing I need to get done in order to see what the heck is causing so much pain. I can't walk for than a few hundred feet without pain increasing, I can't stand for more than 15 minutes without pain increasing and I can barely hold my 1-year old. It is hard to handle all of this without any hope.

    The pain on the left radiates down into my pelvis and left hip. The pain on the right radiates into the hip as well. As the pain increases it goes up into my mid-back and is quite unbearable, even with pain meds. I was on 50mcg of Fentanyl and still in pain that I would put in the 4-6 range on bad days. I need some type of relief.

    Also, forgot to mention that I have numbness in both of my legs. Limited feeling from the IT band to the my thighs, it goes to just about my knees. I have been told this is radicular pain. It started in the left leg with pins and needles feelings, then just went numb. A few months later the right did the same. 10 months after the accident I had little feeling in the top of my legs. I can feel the backside, but the front is numb.

    Please help!!!!

    Last edited by BadBack911; 03-26-2011 at 07:23 PM. Reason: mistyped

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    Old 03-27-2011, 08:46 AM   #2
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    Re: Newbie - L4-L5, L5-S1 -Pain for 2+ years - Positive Disco-gram - HELP!

    Hello badback911, and welcome here. I feel for you. I have been in a car accident about 5 years ago and never got any better. It is not good news for you but at least you know. I have been there and still there. First of all, do not do any surgery, brother!.

    I have been here in this board for many years and have been reading "no success" stories with back and/or neck surgeries. So my advice is a no no.

    Now, why it hurts you and nobody knows? I tell you something. I had an MRI, they did not even want to do an mri...They checked how strong I am (doing this hand test)and said I am great!. I put pressure on those doctors and this neck MRI and so have done it.
    MRI showed I have 2 bulging disks. Nothing really serious doctors said. There is no way you suffer like that. How interesting. They never took me too seriously and said I imagine. It is not herniated disks so there is no way you will suffer for so many years.

    Next, went back to my primary care physician who understand "a little" bit about chronic pain(what me and you have)and put me on oxycontin now on 40mg + Advil and that is not enough. It is getting worse. drives me nuts.

    Have you done CT???? MRI is grest but sometimes when CT shows more.
    You had a back whiplash then. Well, you need to understand that also you have scar tissue, do you know what it is? - it means your muscles, ligaments and tendons all been damaged(it took me a while to understand this why me etc and still do not want to accept it that doctors cannot fix me or YOU).

    So, basically if pain persists more than half a year my doctor said it is called chronic pain.
    He does not mention anything about nerve pain. But what we have is nerve pain also since you describe some disks issues? discograms??? - it is very possible you have BULGING disks - It is probably very minimal and cannot been seen on MRI and it is pressing on your nerves. Have you asked your doctors if you have bulging disks???

    I have consulted a professor and he said if pain persists more than 6 months it is probably the DISKS (car accident/whiplash - So I would think you have bulging disks, my friend + scar tissues damage.

    There is not much to do. The medical world, as of today, does not have a cure for chronic pain/nerve pain/scar tissue damage.

    You probably have what I have the combination of scar tissue damage + bulging disks they mght be so small so cannot been seen on normal MRI.

    Ask your doctor about that and try to do the CT if you can.

    So only medication can help you. I understand taking fentanyl patch(which is the stronger one to fight pain)helped you but you could not be a teacher with that(cognitive problems)well, some people with chronic pain cannot hold any jobs by the way, or they work desks jobs. Have you tried Oxycontin - I can tell you that does not do anything for memory. In fact, you feel like you drank coffee - some people cannot sleep while on it if taking close to bedtime.

    So do not do any surgery - my advice.

    The only HOPE is medication, medication medication.
    I have a question for you if you do not mind? - Were you able to sleep??? or were you 24/7 awake cause of pain?. That will interest me to know.

    I wish you good luck, I also wish we could turn back time but that is impossible.

    Last edited by nochange; 03-27-2011 at 08:55 AM.

    Old 03-27-2011, 11:02 AM   #3
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    Re: Newbie - L4-L5, L5-S1 -Pain for 2+ years - Positive Disco-gram - HELP!

    Hi, and welcome to the board, tho I am sorry you have to search for help.

    Since your MRI's aren't showing anything, and since the discogram was positive, I think you need to continue your search for a doctor. You need to find a spine specialist such as a Neurosurgeon or an Orthopedic Spine Specialist....they should both have a fellowship and limit their practices to the spine only. These are the 2 kinds of doctors with the most training and experience.

    It sounds to me that you have some nerves being pinched...that may not show up on an MRI. The next step might be to have a myelogram/ct scan where dye is injected. That should show any problems such as nerve issues, tears in discs, etc.

    I have to disagree with sometimes is our only option to get better, especially with nerves being damaged. You don't read success stories on these boards very much....and that's because those who have had successful surgery are not here. They are living their lives to the fullest and have no need of these forums. I don't think surgery should ever be the first option, but sometimes there is no other way. I think if you find a good spine specialist (I prefer an Ortho with fellowship) you will get the help you need. Be sure to take any films, scans, discogram results, etc, with you so that the doctor can look at them himself. Their trained eyes often pick up things that others miss. Even radiologists can look at the same films and come up with different opinions, so you can't rely on their reports only.

    I hope you will stay in touch. Feel free to ask questions. You aren't alone.

    Lumbar surgery x 7 over the last 30 years.
    cervical fusion...2 levels
    medtronic pain pump implanted
    Last surgery Oct, 2010, 3 levels

    Old 03-27-2011, 01:59 PM   #4
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    Re: Newbie - L4-L5, L5-S1 -Pain for 2+ years - Positive Disco-gram - HELP!

    Carol and NoChange,

    Thank you for your replies. While I am hesitant to have surgery, I am willing to try anything at this point. I have tried acupuncture, reiki healing, self-hypnosis(which actually helps temporarily and with sleep), physical therapy, injections, traction and a few other things. I just want to get some aspect of my life back, my quality of life is so much different now. It is hard to be positive when you hurt every minute of the day.

    The doctor who did the discogram stated that disc replacement might relieve the pain, but this is a major surgery and since I have two ruptured discs it is a difficult surgery. He said that there are a limited number of people qualified to do a two level disc replacement, apparently they don't even consider 3 levels so I am within the range. I would like to try something minimally invasive, such as micro-discectomy before going to the more extreme disc replacement. I hope the doctor is willing to try something next time I see him.

    As far as not being able to work, I have to figure out some way to balance my pain so that I can function. I can't be happy unless I am being productive and teaching is what I have always wanted to do. It is my passion. Unfortunately, I have trouble making it through even a single class right now. In the fall I will have three classes and that seems impossible if nothing improves. I only have one more semester until I have my credential, unfortunately the hurdles that are in my way are the most difficult, student teaching. I hoped that with each week I would develop some tolerance, but it has been quite the opposite, it gets worse each week.

    I am going to ask my doctor if he would consider a lower dose of Fentanyl, but I doubt they will since I had a suicide attempt after taking that for an extended amount of time.

    I wish you both the best of luck and appreciate your input on my struggles.

    Be well

    Old 03-27-2011, 07:11 PM   #5
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    Re: Newbie - L4-L5, L5-S1 -Pain for 2+ years - Positive Disco-gram - HELP!

    You have approached treatment in a somewhat unique way. Usually a discogram is one of the final tests a doctor will perform prior to surgery. It is usually to confirm findings from imaging such as MRI or CT scan and whatever physical evidence the spine specialist finds when examining the patient.

    I'm guessing here, but I imagine the reason the doctor told you he wouldn't feel comfortable doing anything less than a fusion is because he knew it would only provide temporary pain relief, if that...and that it would just be a matter of time that you'd be back needing a fusion. Revision surgeries have lower success rates so doctors like to do the appropriate surgery for the problem the first time, if at all possible.

    I don't know too much about disc replacement other than it is more popular and commonly performed in Europe than in the US. As a matter of fact, for the past 18 months, it has been difficult to get insurance to cover more than a single disc replacement.

    My guess is that your back may be too damaged in other ways to make ADR possible. I would suggest you consult with several fellowship trained spine specialists. I would suggest an opinion from an orthopedic SPINE surgeon (not a "regular" ortho doc.) and a neurosurgeon who devote their practice to issues of the back and neck. (You don't want an ortho surgeon who replaces knees and hips, and you don't want a neurosurgeon who prefers brain surgery). With a multi-level fusion, you want a spine surgeon who has a lot of clinical experience and is used to performing multi-level surgeries.

    My guess is that this will provide you the best route back to some sort of normalcy. Surgery is always considered as a last resort, but sometimes it is the only solution. And while it is true that you can find real horror stories on the net, there are hundreds of thousands of back patients who have had satisfactory outcomes from fusion. I count myself among them.

    Good luck in your pursuit of a solution to your problems. I hope you will be able to consult with several spine specialists and find one who you have confidence in and who can help you.

    TT ~

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    car accident, discogram, l4-l5, l5-s1, losing hope

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