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Anybody have any advice for me?

DeVoreNOLADDeVoreNOLA Posts: 11
edited 06/11/2012 - 8:55 AM in Lower Back Pain
Hello my name is Megan I am a 23 year old female 5'3" 160 pounds, I was in a car accident almost a year and a half ago resulting in multiple disc herniation's. I have been to chiropractors, pain management doctors, and a surgeon. I have had two cortisone injections which resulted in no relief left me with more problems (menstrual, acne problems, and weight gain). I have had 2 MRI's and a discogram (unbearably painful) leaving me with a diagnosis of having two herniated discs in my lower back. I am in constant pain in my lower back and my calf/heel/foot/toes constantly are going numb or it feels like needles are sticking in them, and I cannot find relief. I am currently on hydrocodone 10/500 which do nothing to ease the pain I have tried multiple other pills with the same result, my pain management doctor told me that he did not want to put me on anything stronger as a possible addiction could incur, I have NEVER had a history of drug abuse or any problems with addiction I am afraid that because of my age that they already come to that conclusion. I am about at my wits end and about to loose my mind the pain is unbearable which has caused me to only get 2-5 hours of sleep every night granted I do have ADD so my mind never shuts off but since my injury I have lost a significant amount of sleep. I have recorded my sleeping habits and when I do finally fall asleep I am constantly tossing and turning (up to 20 times in a 5 hour period) or waking up. My surgeon is recommending an anterior lumbar fusion of my L4-5 which I am scared to death to do because of my age and the serious nature of the surgery. I don't know what to do I just want some relief from the pain and to be able to have a normal nights sleep and function like a normal human. I want these doctors to start taking me seriously instead of just pushing me aside because of my age; I am 23 but I am very intelligent, I do not party or drink or do drugs the most I ever do is go out to eat or to a movie once in a blue moon. I am a homebody which is how I like it I would rather be home with my dog watching a movie. Any help or words of wisdom would be greatly appreciated.


  • Hi Megan!

    I am 24 years old and had a cervical disc herniation. I know how painful injuries to the spine can be.

    Only you can decide if you are ready to have surgery. Have you exhausted all the other options? Do you feel like the pain is ruling your life? Did you get a second opinion from a different surgeon?

    I personally decided to have surgery. In June I had a c4-c5 anterior cervical disectomy and fusion. I am 2 months post op and doing so much better! Recovery wasn't even that bad.

    If you have any other questions feel free to ask here or private message me.

    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • you are in the right place here .i myself have 16 years of back pain /operations and painful procedures under my belt .and you will find the rest of the bad back team very understanding and helpful .our top man RON is a font of knowledge and a lovely man .right to business .i too am going for an ALIF in dec and i am also a bit scared but like i tel every one once the cannula is in the back of your hand its good night and you wont remember a thing.the dreaded discography yes they hurt like hell so you have my sympathies there .sleeping too is a very common problems with back pain again i too only get 2 hours a night .as for pain killers you are on a small amount of oxycontin and your doctors main priority is pain control .unfortunately addiction or tolerance as we normally refer to it is common with all opiates but as long as you are taking then for PAIN and taking the prescribed amount then any {addiction } issues can be dealt with post op when hopefully you wont require as many or can be put on a lower strength pain killer.i too have a dog its a cocker spaniel {blue roan} my advice to you is go to your doctors and be honest with him/her and see if he /she will up your pain killers as good pain control is very important at least until your operation .you should know that the ALIF is a massive surgey and it will take many months for you to get back to [normal} or as normal as you can be .you should make sure that your consultant is suitably qualified to carry out this kind of surgey as you don't want some one straight from med school operating on you! .any more questions please feel free to ask .PS for now heat/ice should help as should a TENS machine another good investment is a rise and recline electrical recliner when after your operation and for now .you will be able to get comfy on it and sleep on it it will be a god send after you operation .take care and stop worrying
    tony {UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • that I have found somebody near my age that has gone through this that I can talk too. I have a few worries about a fusion. What is going to happen 10-20 years down the road. What if it doesn't fuse? What if my body rejects it? Things like this I am worried about how long I'm going to be down and healing.

    I cannot function as a normal part of society because of my pain level I cannot stand for long periods of time or sit. I am most comfortable on my side with a pillow in between my knees.

    Thank you Donna for your response
  • I only take my pain medicine at night before bed the only other time I take them during the day is if I am having a really bad pain day and I will half the pill I have a pretty high pain tolerance and it has developed in the past 1 1/2 years. I have done a little experiment on myself and stopped taking any pain pills for two weeks to see how I would handle it this was the most miserable 2 weeks of my life my brain was so scattered I accidentally poured coffee on my computer among other things, and instead of the "normal" 2-5 hours of sleep a night I was getting 2-3 and constantly waking up.

    I have a Dorkie Dachshund/Yorkie mix her name is Grace "Erin Go Bragh" O'Malley

    I absolutely adore my surgeon and have read up on him for a constant 8 months now. He actually approves surgery's for the FDA or something along those lines.
  • Hi Megan,

    Any time you want to talk feel free to PM me. Also if you have a facebook PM me and I will give you my full name.

    As for your questions...

    What is going to happen 10-20 years down the road?

    No one knows. What is going to happen in the future if you get the surgery? What is going to happen if you dont? I chose to have the surgery because I knew my only other option was to suffer. Maybe I will herniate a disc above or below the fusion.... That is a risk i took. Its worth it to me, maybe I'll have a good 10 or so years before I have to get another surgery. I would not have had any good years if I didn't have the surgery.

    What if it doesn't fuse?

    Our age gives us a better chance of fusion. Also it is up to us to make sure we are not smoking and doing everything possible to be healthy and promote bone growth.

    What if my body rejects it?

    Will your surgeon use titanium plates/rods/screws? That is what mine used on me. I did not have a reaction... and I can't even wear gold earrings without a reaction. My surgeon says a reaction to the plating is very very rare.

    How long I'm going to be down and healing?

    Probably a while. I would talk to others on here that had the same procedure. Its worth it if you feel better after right?
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • HI Megan,

    First let me say welcome to spine-healh. Look around at some of the other threads and you will find there has been others your age whom have had surgery. One problem they are mostly gone right now out living a normal busy lives. But there are still success stories on the board, which you can see. As far as your doctors taking you serious, it might be your pain management doctor is well aware you need surgery, by giving you more meds now, post surgery it will be harder to control the pain. If you are strictly choosing the conservative route and are against surgery, then you need to discuss that with your pain management doctor. Also I strongly urge you to get a second opinion, if you have not already. I understand you have researched them, but it might help you with your decision.

    The one thing I can tell you most here do surgery, when the pain is taking every part of the daily life and interfere's with everyday living. Will your surgery be a success, whom knows, it is major surgery and surgery comes with risk. But if your not getting around now and have lost all normal life then sometimes going for surgery, your not trading much. Also you need to ask your surgeon what is the percentage surgery will help you. Also find out what is the risk of you not having surgery?

    As far as medications, your explaining nerve pain have they tried you on lyrica or neurontin to help with the nerve pain or what about a muscle relaxer? If he/she is afraid of addiction there are other meds to use and try. There are obviously some that won't work sense the injections didn't help.

    Just thought I would stop by and welcome you to spine-health. Keep us posted on how you get along.
  • Hi and Welcome to Spine Health. You will find a big group of people who have had many different types of procedures and treatments.

    I have had 3 fusions. I was knocked unconscious by a snowboarder and it ruined my SI joint and spine not to mention numerous other problems. My back eventually started deteriorating and the vertebrae slipping. I had my first fusion at L4/L5. The my spine started collapsing in on itself and I had L1-L5 fused. Later L5 started slipping forward so L5 and S1 were fused.

    All my fusions were successful and got rid of the problems, pain, weakness, etc. I am not as young as you but I build bone quite well and all my fusions are very solid. The 2nd one used a bone graft from my hip and I think that was more painful than the fusion. It definitely takes a long time to recover from.

    The fusions themselves take a long time for total recovery. I was able to return to work 3 weeks after I got out of the hospital. I was very active before surgery and I know that helped plus I had been doing core strengthening for years.

    My plates, rods and screws are titanium. No problems there.

    Some people have a one level fusion and have no further problems. Other people, depending on their particular spines and problems, find that the fusion can put stress on the levels above and below. Everyone is different.

    I would do it all over again as I am mostly pain free. Sure there is some discomfort but nothing like I had before surgery.

    Good luck and let me know if you have any more questions.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Welcome to Spine Health Megan.

    I am a double fusion (lumbar/cervical)- triple crowner patient (cervical/thoracic/lumbar). I agree with the others responses. My lumbar fusion was a life saver (literally)after being in pain for a very very long time. The jury is still out on the cervical but I was hit (T-boned 8 weeks after my acdf the day I was released back to work). I now have multiple thoracic herniations and I am looking at my options. I don't sleep well either.

    What I would do for 8 hours of uninterupted sleep???

    I wanted to suggest that you ask for a sample of ambien if you haven't yet tried it. Also if you don't have a foam topper (the thicker the better) you may want to try that along with a muscle relaxer at night. Talk to your PM about it. I take zanaflex after 5 years of flexerile.

    I also take a host of other pain meds (used to take what your taking but changed about a year ago).

    Feel Better,

  • all so very much for your responses.

    Now for the medications I have tried I have taken Flexeril it didnt help and it gave me a headache.
    Tramadol no relief
    Hydrocodone 5/500 no relief. Along with
    Flexeril no relief
    And my last one has been of course the Hydrocodone 10/500

    I have taken Ambien before, I was diagnosed with PTSD about 3 years ago. I was sleep walking on it. I closed my door to my room so my cat and my dog would get into my living room and terrorize me all night. I woke up one morning and found my door cracked. Apparently during the night I had gotten into my bedroom closet gotten into my dirty clothes hamper and thrown all of my dirty clothes all over my living room and kitchen. That scared me enough to stop taking it thinking maybe I could end up outside let my animals out or even get into my vehicle I was living on my own at the time, since now I am not it might be worth a try.
  • also I meet with my pain management doctor tomorrow morning so I will know then what we both can figure out for myself.
  • you are on a very small amount of oxycodone the safe dose is 400mg a day .so your doctor has a long way to go yet .i am up again at 3 am.its no fun .i have been this way for 5 years .every night 2 hours sleep .you are not alone .unfortunately as you are so young you will more than likely require revision surgery before you are 40 .{i am 45married and on my 3rd surgery} because you are young the chances of failure is low so don't worry about what may happen .you don't need the stress
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • I went to my pain management doctor this morning I half way got to explain all of this too him he mostly ignored me or rudely interrupted me. His decision, take me off of pain medicine all together I am sure I looked at him like he had four heads when this came out of his mouth. I told him as of right now I am not very comfortable getting the fusion his response "Oh so you can live with the pain you are in then" once again I am sure I looked at him like he had 5 heads now. He pretty much acted like my only option was to have the fusion and that's was it for him. He has taken me off of my medication and now I feel completely helpless. I cannot continue to only get 2-3 hours of sleep a night I will completely lose my mind.

  • Hi Megan.

    You really mean to tell us that your pain doctor, your PAIN DOCTOR, completely stopped your meds, narcotic medications, and expects you to stop cold turkey???? Are you kidding me??? He isn't titrating you down??? Nevermind the fact that you can't stand the pain without them, but now having to face withdrawal? Some doctors simply tick me off! Ooops, rant there, sorry.

    I think you might need to go to your PCP or surgeon and talk to them about getting medication. One think I notice in your posts is that perhaps the current medication your taking isn't helping because you're having nerve pain and need a nerve pain medication like neurontin or cymbalta in addition to the other pain med.

    If you plan on having surgery, your surgeon might take on the duty of filling your meds, mine did and still does.

    Take care of yourself and I'm sorry, but it's time to be your own advocate. Sometimes we have to fight for what we need, find new docs or just have it out with the old one.

    Please keep us posted.
  • my lawyer got an earful this morning about it. He is getting me into a psychologist to deal with my anxiety and ADD I am hoping that dealing with these issues might help me to relax and calm down a bit so the pain and sleepless nights wont be so bad. I was made to feel like a drug addict this morning and I feel so helpless at the moment. I wish I could afford my insurance so I can take matters into my own hands. I have no other thoughts other than they are trying to force me into having the fusion. Unfortunately my pain management clinic is pretty much run by lawyers so the forcing more towards a fusion might very well be the case with what happened this morning.

    Unfortunately the pain is mostly in my my back and not my leg. I have tried the nerve pills and they gave me no relief, just a headache.

    I am a nervous wreck at the moment and wish I had the answers right in front of me.
  • My surgeon is of course wanting to do a fusion on my surgery paperwork it gives me the details of the treatment/procedure it says: Anterior Lumbar fusion L4-5 Anterior instrumentation L4-5 application of cage mozaic Evo III excel (I believe that's what it says) and bone matrix. Can anyone help me out with what this means. And also somebody told me that their surgeon told them never to get a cage, I am unsure why does anybody here know?

    Thank you
  • To Megan and the rest of my poor tormented fellows,
    I am a 34 year old man with a family. I have a very physical job and earlier this year I felt I overdid it at work pushing on something heavy. I had a sore back for a few days which turned into a few weeks and I went to the chiropractor. Tho she was very nice and really spent time trying to fix me I felt just as bad about half an hour after the visit as before. I went to the doctor and went through the referral process to get to an orthopedic surgeon who prescribed an MRI. The images revealed two disc hernias on L5 and L4, so I was recommended Tom either pain management or surgery. The pain management looked hokey to me, and so far none of the pain meds had even made a dent in my horrific pain. I couldn't sleep much, I couldn't work, I could not sit, or lift my small children. I was depressed and in great pain. I finally had the surgery a couple months later, the microdissectomy, and immediately felt better. I do mean immediately, I felt better ten minutes after I woke up than I had in three months.
    Over the next two weeks I improved steadily with less and less pain, all due to surgery I believed. Then at two weeks I fell back into awful unendurable pain. It lasted all week without a change and I was devastated. I thought the operation was not a success, that I was in for more pain and possibly more treatment. This went on a while and then I talked to a friend who was a nurse. She told me that the pain should lessen over time until it was gone. I believed her and the pain began to recede, slowly.
    I returned to work, but still had back pain in significant amounts. I figured it was something I would just have to learn to live with.
    Last week, however, an elderly man who was a fellow back pain sufferer with a history of operations recommended a book that he told me had cured his pain with Just a reading. I was skeptical, but I was able to find it at the local library so I spent no money on it, just in case this was some sort of scam.
    I read it, I accepted it, and I now am free of back pain. I feel great!
    I learned that what I thought was pain due to injury was pain due to decreased blood flow to my back muscles and nerves. It is a condition called Tension Myeolitis Syndrome and it can cause pain in any extremity or back, wrist, foot, ankle, knee, you name it really. The cause was NOT a herniated disc, of which I only had one fixed anyway. It was the autonomic nervous system choosing to restrict blood flow to my back in order to give me pain. I will just post the doctor's name who wrote the book now and give the title. If anyone is truly interested in being pain free, go grab a copy and read it. It is short.
    Dr. John Sarno is the author's name. "Healing Back Pain:the Mind-Body Connection" is the book, though he has a much more updated book out called "The Divided Mind" which i am still reading.
    Literally during the time I have been reading the two books, my back pain has MOVED from my lower back to my upper back, then to my knee, and finally to my elbow before disappearing! It is so weird, but it only proves that the doc is so right!
    Anyway since I know firsthand how awful back pain is, I joined this forum to share my story in hope that someone else could be helped.
    Best wishes for good health!
  • So Nola that pain management office is the only one you can visit?
  • Unfortunately cezeude I cannot afford my insurance so I cannot go off on my own. And my lawyer doesn't have anybody else he can send me too, and I'm afraid at if I did it would look like I was shopping around for pain medicine and the other lawyers would have a field day that one. I have to watch every step I make very carefully.
  • Have you heard of Klass Vaki, google it!
  • That looks AWESOME!.. Now, if only I could afford that :( I wish I could get one of those.
  • An anterior fusion means they go thru the abdominal wall instead of the back side. It is usually an easier recovery as they do have to deal with so many muscles as in the back.

    Instrumentation means they will put stuff in to hold the fusion in place while it fuses. I have had both anterior, posterior (back) and 360 fusions (360 they go in front and back). I have screws, plates and cages (and a bolt!!) so I think instrumentation can be widely interpreted. You surgeon can answer that question for you.

    There is a lot of information on the internet too about the procedure.

    Hope this helps. Feel free to ask more questions.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Thank you so much for your input it is greatly appreciated
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