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Horiffic back pain and no answers.. Please help

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:25 AM in Lower Back Pain
Ok, I have been reading the blogs on back pain and all the Dr.'s and procedures that have been tried or done to help cope with the pain. I will begin to tell you my story, in hopes that someone can help me.

Well, the back pain is not me but it is my sugnificant other. He has had some back pain for the last 8 years. ( He is only 28 now ) However, in November 2007 he fell asleep at the wheel of his car and rear ended a full size truck. Totaling the car. ( By the way we just met in August 2007, moved in October 2007 and then the accident November 2007) He owns his own business and has not been able to work sense the accident.

So we had saw a neuro sergent and he said that he could not find anything wrong to cause the pain. So then, we seeked another opinion and was told he was way to young to have that bad of a back and the pain. So then, he continued to see his Chiropractor but that was not helping. We have visited the ER by this time at least 5-6 times. Where we also were told that he was not in that much pain and just wanted pain pills.. So we went to another specialist to get another opinion, ( by this time I am getting mad because of the tossing around these dr's are doing and saying that he is not in that much pain) I start telling the dr about this and that with the things I witness everyday, morning and night.. He then looks at me and tells me that I don't know what I am talking about and continues to say that there was nothing he could do for us. Not even evaluating him to see.. So we left there and never returned. Visited the ER a few more times due to horrific pains. So I then went serching on the web to find other solutions and situations like ours. We found a laser place that does laser surgery on the spine. Very scepitcal that I am researched it and found a few people that had this done. And for them it had worked. Years later still working. So, I contacted the place to set an appointment up to evaluate him and see if they could help.. They said that he had a 80% chance of the procedure working, but the thing is, is that our insurance did not cover the procedure. So we had to come up with the cash which was $8,000. Just for the first procedure. But because he had the problem for so long it would most likely take 2 procedures. So it is now June 2008, dealing with horrible muscle spasms that would literally throw him out of the bed onto the floor.. He could not walk, sit, lay down, nothing. So we move forward with this surgery. It only helped with one side of the lag pains. So then a few months later, we go back and they want to do another surgery to remove the pinched nerve. So we do, and it costs another $4,000. ( Aug 2008 for that surgery) So now it is November 2008. A year later and nothing has changed other then the really bad muscle spasms. He still has spasms and leg pain. Can't sleep, walk, work, sit. This has him depressed everyday. We have not had time to have a life. We have 3 wonderful children and he can't even play with them. We have no relationship nor are we able to go out and enjoy life due to this horrible back pain... No one is able to give any answers to help. He is on so much pain medication and it is not even touching his pain. They are wanting to fuse his spine and we are waiting until it is the last resort. Any answers please help.. It is his L4-L5 S1... Thanks Kelli
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Comments

  • Sorry to hear about your spouse's back issues and pain. I can only imagine how you feel because I watch that look in my husband's eyes and I know he misses the life we used to have.

    Muscle spasms are really tough to deal with, and I found that switching from Skelaxin to Soma really helped, along with making sure I take enough magnesium. Products like Natural Calm, which is an effervescent and used for relaxing in general, seems to help calm my back.

    I hope he is able to find something to give him relief. I think many of us have also been in the position where we were not taken seriously with our pain at ER's and such, and it is horrible.

    Since I've been switched to a long-acting medication, my pain control has been much better managed, although we are still tweaking. I also have breakthrough meds, which I do take on a regular basis. Will be getting the SCS trial coming up, and hope it helps me with my permanent nerve pain. My L5-S1 is already fused, and prior to that, I had a really unstable back. My disc was both over-rotating and shearing, causing massive pain and instability. It was a dangerous situation that had to be corrected. It didn't help my permanent nerve damage, though.

    I would think your first concern is to make sure his back is stable and safe, but like you, promises of pain relief just weren't realized. What tests has he had - any nerve tests, discograms, etc.?

    Welcome to Spine Health. I'm sure he appreciates your loving care and support.

    Cheri
  • I am so sorry that your boyfriend is suffering so needlessly and those who dismissed him are to blame. Age makes no difference, there are teenagers and young adults who have DDD, scoliosis, or herniated discs caused by trauma. One doctor had told me very early in my back trouble that my spine looked like I've been in a car wreck from top to bottom. I was 33. Then things went downhill for me fast. I had a discectomy that didn't help and this year I'm trying to recover from a 2 level fusion from L4-S1. I'm in constant back and nerve pain and my life has been changed drastically. I have to take multiple medications to be able to function. But most times I'm laid up.
    I hope all goes better for your family, and that your children get to play once more with their Dad. If you have any questions, feel free to PM. Take care >:D<
  • I do understand that age makes no difference, but for some reason the Dr seem to think so.. I also forgot to add that he is also a tattoo artist and peircer so he has tattoos and peircings. ( so they automatically think drugy) First impressions are a very bad quality to have and the Dr's that we seem to find are just those types. But I never give up trying to find one that is a good one. However, we have found a really willing PM Dr that is not afraid to write prescriptions. But we are still trying to find the underlying problem for the pain. We have seen so many Dr's that have said compltely different things on how is pain should feel. But the problem is they don't listen to what he feels everyday. So right at this moment we are trying to find the right medications to help cope with the pain, but I think that the nerves are damaged and medications are not going to help with that so I was doing some investigating on the RF procedure. We are thinking maybe talking to the PM Dr about it and maybe he can refer us to a specialist that does it. I am not sure exactly what to do, but all I do is research everything and print to write it out for us to discuss with the Dr. But I do than you for you advise and help. I hope technology gets a whole lot better for people like us on spine health..

    Best wishes
    Kelli
  • dilaurodilauro ConnecticutPosts: 9,715
    ">image

    For a Spine-Health Site introduction, Click on :

    Welcome To Spine-Health

    If you have any questions, feel free to contact (PM) any one of the Moderators here Priestess , Bruce , Paulgla, DiLauro

    The Spine-Health Web site offers so much more than these Member Forums.
    Check the various tabs at the top of the Spine-Health page and you will find so much that is offered here.

    Please remember that all information you receive from members on this forum is NOT
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    To get back to the Forums, you can always click on Forum Home

    Please feel free to contact me at rdilauro@gmail.com or send me a message
    ________________________________________________________________________________
    Its sad to read stories of people who are in pain they seem to get no help. I have to assume that your husband had MRI's to determine what and where the surgery was to be performed. I am more of a purist and what to understand what is wrong and what my options are. The way you both were treated is a disgrace. Spinal problems do not discriminate. Young Old, regardless of Race, Religion, Creed, Nationality, etc spinal problems can hit all of us.
    I get annoyed when I hear that another person was told that they shouldn't be in that much pain because they are young!
    Professional in Medicne who say that to me really dont belong in the profession. Normally , based on MRI readings, a doctor would lay out an action plan.. That could include a number of conservative treatments to see if that can help the problem. Only when all of those methods are exhausted is surgery the next consideration. I also believe in the normal medical professionals who operate on cervical and lumbar situations. It would also be good to know that they can handle thoracic surgery, which itself is extremely difficult and complicated and not all doctors are qualified. I do know of people who have gone to the various Laser Institutes for surgery. I've seen about a 50/50 success rate. Problem I have with those places, is that they are so big, you are just a number and not a patient. And as you mentioned, they are not covered by insurance companies.. There are reasons why they dont.
    Do you have a family doctor, a primary care doctor who you can start with and then move on to a neurologist or neurosurgeon. From there a more detailed action plan should be laid out. What current medications is your husband taking and at what dosage? Has he had other treatments such as Physical Therapy, Aqua Therapy, Passive Traction, Ultrasound, Acupuncture and more.
    At this point since he is in so much pain, I would strongly suggest finding a specialist that you both can trust and that is willing to work with you.
    I hope the best for your husband, yourself and your family.
    Please continue to use this site to discuss your husbands problems, to read with others have been through or just to rant and rave and let off some emotions. You will find a very cordial member community here. Besides the Patient Forums, the main Spine-Health web sit contains a vast set of material including videos that deal with spinal related problems.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • The information you have provided me with is great. No, back pain does not discriminate any age, race, religion, creed, but Dr's do.

    About 2-3 weeks after the accident we saw a very qualified Neurosurgent, who had the first MRI's done. He reviewed them and saw a ruptured disc, ddd, and pinched nerve. However, he said he saw the rupture on the right side, which he was pain in the lower back, down the left leg down to his toes. He could not put any preasure on the left leg. So he dismissed us and said he would not do any sergerys on him due to his age and he feels that it would not help his pain. So we go back home and talk about what had happened at the office and come up with a plan. ( how ever before we met he has had knee surgery, shoulder surgery, hand surgery. But had to go through many different Dr's before they found the problem because MRI's, X-rays, CT scans, everything did not show anything. But it took his uncle which is a pcp to X-ray the back of his knee to find the problem. The shoulder was just felt by a specialist and said you need surgery now. So this is not the first time he has ran in to this problem with Dr's dismissing him saying nothing was wrong) So we planned on just doing the Chiropratic visits and deal with it. Well after 2 months of that not working and throwing out his back at least 4 times, his chiro referred us to someone he trusted. He suggested epidural injections. We tried that and they did not take. So then he referred us to a neurosurgent. The one that laughed at me and told me I had no idea what I was talking about and there was nothing he could do. ( no evaluation nothing, just looking at the MRI report not the disc we brought with us.) So we were starting to lose hope at this point. Well I was, he was used to this kind of treatment. He got it every time he needed help. But, I refused to give up and started searching the net. I found the laser place in Flordia. But they wanted $30,000 up front. Heck no... Who has that kind of money just laying around waiting for that? We visited the ER a few more times and they would not treat him anymore. Told him he needed to seek a PM DR. Oh ok, we knew that but no one would prescribe medications and he needed something for the pain. So, that eliminated the ER for us for help. ( At this time he is on perk 10 mg 3x day. not helping at all) So we called in to his PCP to get a referral list of PM doctors and picked from those. We went to the IPMS. He thought his focet joint was the root of the pain, so he did an injection. Oh that was a hugh no no. The next day he started to have really really bad muscle spasms. So uncontrollable he kicked a hole in our bedroom wall. ( no joke, still patching it) These spasms where so bad that it would literally throw him out of the bed and I would wake up to the sound of him hitting the floor. So I would have to help him get up after laying there a few minutes to try to fight the pain he was about to endure. So I get him up and get him back up into the bed. Just to do it over and over and over again. So I have had it by this time. I was desprate at this time to find something to help. I was talking to my mother about the laser surgery and she told me a few people she worked with had it done and worked great. I talked to them and asked them questions. Years later it was still working. ( I was so excited at this point that there was hope) So I called up the place to set an appointment at a place where I live. I counted the days to the hours for this. We watched a slide show and listened to the Dr talk about the procedure. We agreed he would try it to avoid traditional surgery. The catch was to come up with $8,000 to have the first surgery. We scheduled it and I so counted the weeks to the days to the hours on that. That day finally came. ( As you did mention about we were not a patient, you would be correct on that. Did not explain anything in detail during the examination. Never occured to me until now. I was just excided we found someone willing to help and believed us in the pain) June 2008 was the surgery. About 2 weeks later pain started right back up. ( which they warned us about because it had went on for so long) So we go back for a 2 hour drive for the post op appt and they say he needs another surgery for the pinged nerve. ( another $4,000 that we had to come up with) So we scheduled that one 2 months later. His pain has not changed any what so ever. And I know that nerve pain can take longer to heal but no signs of any changes. So now we get to the point of they want to do a fusion. ( my question is, is why do they say they want to do a fusion if they have no idea of what exactly is causing all the pain?) We have a really good PM Dr but very hard to understand, and communicate with. Not sure if that is a good thing or bad. But, as I keep doing more and more research I learn more things are out there to try. Why are these DR not offering anything to help stop the pain? Why do we have to pay these Dr's and we are doing the research of our own treatments to try? I am lost and stuck. And the medication question I can answer a few but not all.

    oxycotin- 80 mg ( long acting)
    methadone- 20 mg 3x a day
    phinergin- every 4 hours
    foricet- when needed for migrains ( which is a lot with trying to cope with the pain)
    a high dose of steroid 2x a day
    lexapro
    xanax
    daily vitamins
    and a few more not sure right now

    Well I am sorry so long, but I was trying to get out everything play by play. So much has happend this past year which includes me being diag. with begining stages of cervical cancer. So, it is a lot to deal with when you have all of that plus 3 kids. 2 boys ages 4 and and 8 year old girl and a dog. Rough days... But I am a fighter and do not give up on anything. Not until I find an answer and fix the problem.
    Thanks for listening and helping... Kudos to those who deal with the pains everyday.. I pray something will happen for those in need of help.

    Kelli
  • We have tried Chiro, PT, Traction, injections ( multipule ones), MT, Medications. Nothing seems to help. So that is why I think it might be perm. nerve damage and thing the RF might be of some help.

    Thanks again and Good luck to all,

    Kelli
  • i am sorry to here that he is in so much pain
    i too have had 2 operations on L4/L5/S1 .my last operation was Nov 07
    unfortunately i am in loads of pain due to scare tissue and DDD ans spinal stenosis i also have thoracic outlet syndrome.i am unable to sleep for more than 3 hours at a time wakes me.we have an electrical adjustable bed and i have a recliner.both these items help.i take 320mg of oxycodone and 20mg of temazepam at night .i live in the UK Manchester .i have been given the best quality operations .but i have been told by my surgeons that there is nothing more that they can do.i am 42 .i have had pain since i was 30 ..when i had a near fatal car smash.the only thing i can suggest it to get your husbands medications upped and maybe a spinal cord stimulator will be a help for him?{it would have been no good for me because i have congenital abnormalities of the spine }.if you want to contact me via email please do so
    tony.beer1@googlemail.com
    good luck STRAKER
  • I am so sorry about your diagnosis. I know you will overcome this and you and your family have our support and prayers. I hope you have family and friends to help out in you and your boygfriend's time of need. I am optimistic things will turn out okay and I realize this is a tough time for you. >:D<
  • Thank you all for the well wishes and yes I am staying strong for my family. I am not giving up hope on something working for all of you guys in your pains and trials and errors. I always hope for the best but prepair for the worst. But we did get new meds yesterday and they seem to be working right now at the moment.. lets see how long this time.. Best wishes all..
  • We have another referal to another neurosurgant and another MRI with and without contrast.. Lests see what it reveals... and changed meds to transdermal patch, soma, oxycodone. it seems to be working so far I hope it stays working.. Godd luck to all
  • You seem like a strong person and so does your husband.. Keep fighting everything will pull thru. I am in the same boat right now as we speak,, Pain meds are really hard to get now a days because of others abusing the drugs. Which is such a shame because there are alot of people with chronic pain that really need them.

    I asked for something alittle stronger to get thru the holidays,To be able to get by for my young 2yr old. and the rest of my family an he said no stick with the vicodan and valium just take the max dose. which is 4 a day. I been on the same pills for 5 yrs. with new pain issues proved on mri's. i am tired of this losing battle of pain myself. and going to specialist after specialist and to never get a straight answer. And insurance doesnt even cover most of these doctors.

    i just paid over 700.00 just for a trigger point injection in my shoulder.. and guess what? it didnt even work.

    dawn
  • Kelli,

    Sounds like he finally got some relief with the new meds! Hopefully with this new MRI you will both get the answers you need to lay out a plan to be pain-free. Hang in there. You have your hands full but stay strong! >:D<
  • And yes we are both staying strong and hoping for the best. We will keep you all posted on how things are going and the answers we have come up with. So keep watching for more info.
  • Kelli, I really noticed a huge difference when I switched to Soma from Skelaxin. Here's hoping that his pain relief continues to improve!!
  • Thank you, and he has noticed a huge difference already in how the pain medications, and muscle relaxer is all working together and taking his pain down to like a 3 instead of a 10.. That is huge, now he is just trying to catch up on lost sleep at the moment. But thank you, he is doing a lot better today then he has in a long long time.


    www.myspace.com/kellih24
  • I also had undiagnosed back pain and pain down both legs to my toes for 5 yrs before the doctors started to take me serious. They thought at 24 when it started that I wanted to get pain pills also. It made me sick. I went from doctor to doctor,ER, Urgent care and nobody could figure out why I was having this pain. They just kept tossing me around like a hot potato. My MRI said everything was fine in my spine but I knew it was my back. My mother has DDD and has had 8 back and neck surgeries and the pain I was having was just as she described. My life went from an active wife and mother of a 3yr old to a depressed,angry,weary shell of a person. I could no longer take care of my son as I used to I just did what had to be done for him and nothing extra. He was definitely cheated. Finally I found a PM doctor that was determined to find out what was wrong with me and manage my pain in the meantime. He did every test he could and finally did a discogram and there it was plain as day I have a tear in disc L3-L4 and in L5-S1. The fluid is leaking out and it burns your nerves like acid hence the pain in my legs. That is why it could not be found on an MRI. It is not a budge or rupture pressing on nerves but fluid leaking out or a rip burning the nerves. After the doctor found that out he gave me the maximum amount of Norco aloud in a day. (12) But he said surgery should not be done at the young age of 29. He said I would have to have a fusion down 4 vertebrae and that I was to young for that. So I am now 35 and still on meds to control the pain. The PM doctor put me on the pain patch a couple of years ago and pills for breakthrough pain and that has been a combination that has worked the best so far. Although my legs always feel like I have a constant toothache in them. I guess I have adapted. I still plan to have surgery in the future but I am waiting for them to do 2 artificial discs at a time. Right now they are just doing one. My older sister had it done and her back is at about 95%. She also had a tear in one of her discs. I feel really bad for your husband. I know what it is like to be young and have your life as you knew it snatched away from you. I never even speak about it to my husband anymore because he doesn't want to hear it he is sick of it. It's hard to grasp how bad it hurts unless your talking to someone who has felt this kind of pain. It is almost indescribable. I am now having neck pain and numbness and pain down my right arm so I guess I will have to address that after the holiday's. I hope his PM doctor comes up with a plan that will at least help him cope with the pain better until he can get surgery. I don't know what he's on but like I said the pain patch has helped much more than pills for me and It doesn't make me groggy. It did at first but not after I got used to it. Good Luck! Hope this helps.
  • Ok, so things have not got any better from the last time I posted. The updated MRI that we had done in the begining of December have just got word that he is going back to the Chiro for some traction. ( lets just see how much this dr knows and cares for the well being of the patients) His pai is worse and they have switched his meds again from the patch ( cause he was alergic to them after 2 months of using them and them not listening to us of how it was reacting to him ) back on the same meds he was before. He tired some nerve pain meds and they made him sleep for days straight and not know who and where he was. Most days I feel so helpless and feel like it will be like this for the rest of his life. I don't know if I can handle all of that. I have not been to the Dr for my problem sense mid of last year... ( all of our money is going to his dr's copays and medication costs) I hate this crap. I don't know what to do anymore. Not sure if I can do it anymore... Well I will keep everyone informed on what is going on as the news comes to me... I am always available on here to email and my personal email address... Thanks all for listening.

    Kelli :''(
  • I wish I knew something that would make your boyfriend feel better. You two are stuck in an ugly rollercoaster ride. The thing is that you can't neglect yourself, you have a very serious illness and I think it takes front and center-your life is at stake. I'm not taking away from your boyfriend's suffering and I know he requires a lot of help, but you need help too. Is there family of his that can help out? Is your family helping you? I hope you are making it to your appointments, you can't miss those at all. I pray that you will be okay and that your boyfriend's back pain is resolved. But for now you must take care of yourself too.
  • First of all I'm sorry to hear that you have put off your own care. You have a condition yourself which really needs attention and can be life threatening if you put if off. I feel for your husband too though. What did the MRI reveal?
  • I know I should not out it off but until I get my ex to start paying child support and I get some kind of health insurance on my self I feel like I am straped. I had paid out almost $1,000 last year just to get a biopsy and get diag. I don't have that kind of money to keep forking out for the surgery that cost thousands of dollars. And also, I have kids to take care of and all the running around to do for the family, and if I am not able to do that no one can.
    And for his back issues I am not sure exactly what it revealed because I normally don't go in to the appt with him because I have a 4 year old with me all the time. But I think I just think I had a break down yesrterday with everything going on and my ex making excuses not to take our children on his times. I feel like I need a break from everything and I just want to go running and screaming pulling out my hair.

    Well I am sorry if it sounds like I am whining I will stop here. Thanks to all

    Kelli
  • hi kelli
    keep strong hun {i have sent you an email today}
    STRAKER
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