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Desperate, please advise! Almost 5 months with no end in sight

I am new to the forum. I've held back on turning to the Internet for help, because for some absurd reason I believed that a doctor would help me if I persisted. I fell down a flight of stairs in early February and have been getting progressively worse since. I am 34 years old, female, have 4 kids, a husband, a home, and a job. Until my visit to the surgeon on Tuesday, I was still at least able to get out of bed and move out to the couch to lay and do nothing. I am in bed, which is something I don't do, and I am not the least bit happy about it.

Anyway, I saw my primary about 2 weeks after the fall when the soreness turned into sharp pain in the center of my lower back and the numbness and pins & needles in my left leg weren't going away. He of course sent me for an X-ray which showed loss of height between L4 and L5 which he said was normal for my age and refused to look further for any cause. I was able to get a referral for physical therapy after 2 weeks of calling and bothering his office for it. At intake, I was functioning at 54%, which kind of shocked me even. I didn't realize how intrusive the pain in my back, and now leg had become.

I realized before starting therapy that sitting, and especially driving made things far worse, like made my entire day worse, so I gave up both, thinking it was temporary. Therapy was of no use, and caused far more pain than I felt it was worth. My therapist requested an MRI be done before continuing. This was in early April. My function when reassessed at that time was 26%. My primary ordered an MRI, but it couldn't be scheduled until late May.

I went for the MRI, despite being in a lot of pain from the hour long car ride, hour long wait, and NO pain medication. My doctor called the following day to report that the MRI showed nothing, at which point I asked if he was sure there was nothing he could see that would cause leg or back pain, he confirmed that this was true. A copy of the radiologists report showed up in my mailbox the next day. It said something quite a bit different. Stenosis, something else, and the one I think is important, disk herniation at L4-L5 which was compressing the L5 nerve root.

At this point, I called my doctor to ask for a referral to a spine specialist, he refused. My therapist was able to make an appointment for me, which I just went in for 5 days ago. Understand that I have had no pain medication, I haven't left the house in almost 2 months, and I can no longer care for my 3 year old. I haven't been able to work in 3 months, I am not eligible for unemployment, more importantly, I am in pain! I don't know what to do. Also, my vagina has been completely numb for 4 months, with lightening like pain on both sides of the external surrounding area and thighs. Any movement at this point causes unbearable pain. After visiting the doctor earlier in the week, I am in more pain, I assume from the 2 hours in the car as a passenger. I don't want to leave the house unless it is to fix the problem, and I do mean fix. It just isn't worth it.

The surgeon didn't see me, but his PA did. He predictably told me to go home and ice and take ibuprofen for 6 weeks. I have been doing those things for over 4 months, but I'm used to the nonsense. He also gave me a steroid injection in my leg, saying that he thought my leg pain was hip bursitis. The nurse and my mother told me that the injection would hurt, but I would feel better afterward. I figured the worst that could happen is nothing, or my pain would be numbed for 8 hours. I was actually worried that I would have to be careful not to overdo it when I got home. Ha! The thing is, the injection itself didn't hurt, not on my pain scale anyway. I actually said, "that's it?" when the doctor said he was done. I felt no different immediately after, but by the time we made it down to the car I was in tears. My leg hurt more than it had before! I don't even know how this is possible, as there was lidocaine in the injection. It doesn't make sense.

The PA also said that he can't say what is causing my pain. He said it could be any one of 3 things, but here's the thing that bothers me, obviously the stenosis didn't get worse when I fell. The only thing that could have is the disk. He didn't even mention the disk or nerve compression. He scheduled me for a spinal corticosteroid injection, which is coming up on Monday. I'm terrified that it will cause increased pain, like the leg one did, and I know for a fact that I cannot tolerate any increase in pain. I don't have anything, and can't even take ibuprofen now, because they told me to stop prior to the ESI. If I could get up and walk out into traffic, I would be tempted to. I can't bear the pain anymore.

I called his office and stated my concerns yesterday, and asked if they could just fix the problem, and he said they won't attempt surgery unless I've had the injections fail. I don't know what to do. You are looking at a person who let their appendix rupture, had 3 days of pain from appendicitis, and took my sweet time because I hate whining and complaining. I grew up in a military family where you just didn't complain, you sucked it up. I've had active Crohn's disease most of my adult life, so I know quite well what pain is and how to tolerate it. I get kidney stones 3 or more times a year, don't even bother seeking medical care, since they pass on their own. This isn't the worst pain I can imagine, because I know the gut wrenching, nauseating pain of Crohn's disease. I'm terrified of throwing up, so that might skew my view on which is worse. I made it through that without wanting to die every day, so maybe this is worse.

All I do know is that I hurt, the Vicodin that my mom gave me yesterday isn't even touching it. Even if it did, I don't want to be drugged if this is something that can be resolved. I am also terrified of any of the nerve pain, well it feels like nerve pain, and the numbness will be permanent if this goes untreated, not to mention that I can't take the pain anymore. I just can't take it. I can't just find another doctor, even if I could get a referral, I'm at the point where I am not riding in a car unless it's to a doctor who will treat the underlying problem. The increase in pain that comes from riding in a car isn't worth it. I'm in pain now, but I don't need more pain.

I'm just curious on the ESI. Right now it's the only hope I have that something could resolve, or partially resolve. I can't just lay here forever. The only thing I can do is get up to use the restroom, and even then I need assistance to get seated without falling. I'm just afraid that it could cause more pain, like the one in the leg did, and then what? I just want it fixed so I can have my life back. I was finally healthy, very happy, and enjoying life. I'm not even the same person I was at the beginning of the year. I don't trust doctors, as they have caused permanent damage to me before by failing to treat, but I don't think I have a choice.

Just curious if anyone knows first hand if the injection might at least offer some relief? Or no relief, but no added pain? I've taken plenty of oral corticosteroids in my life, so I know they have the potential to help greatly with inflammation. Will my disk just magically not be herniated when the effects of the injection wear off? I need someone's advice. I am desperate. I know it's a terrible time to make decisions, in the legal world we call it duress, but I have no choice. If I refuse the injection, he won't operate, and I have no hope. Seeing as they seem to think I'm Wonder Woman, and won't prescribe any pain meds, I don't know what to do if it makes it worse. Thank you kindly to all who have read.



  • specialksmamasspecialksmama Posts: 14
    edited 06/14/2014 - 3:51 PM
    You need to find a pain clinic in your area! They will help you the most. Stop fooling around with these other drs that don't know what they are doing and their only in it for the money. The pain mgmt drs will help guide you, look at your MRI and go from there with your treatment. I hope that works for you!!.....specialksmama
  • ToomanycatsTToomanycats Posts: 5
    edited 06/14/2014 - 4:26 PM
    pain clinics require a referral, which my doctor won't give, since he says nothing is wrong. i wouldn't mind pain relief, but it isn't going to fix the underlying problem. the radiologist gave an opinion as to what was causing symptoms. she said the disk that was compressing the nerve root. i agree. i don't have a choice on going elsewhere, as they won't without a referral, and i can't get one. yes, i have consulted an attorney, and do fully intend to take action, but it won't fix it. i wasn't able to go meet an attorney for the same reason i can't go find a doctor. the pain caused by sitting in a car, even if i am not driving makes me wish i was dead, and it ups my pain for 3-5 days. i live in the middle of edited, which doesn't help any. the epidural injection is my biggest concern, but if i don't have it, the surgeon won't operate. after the bad reaction to the one in my hip, i'm terrified. if not for that, i wouldn't be so concerned. i am planning on refusing the injection if the doctor performing it refuses to prescribe anything for pain. if i could drive around or ride around and had time on my side, i wouldn't be desperate. just gets worse daily, and the only doctor within 200 miles that will give a second opinion can't get me in until the end of august for an assessment with his pa. lord only knows how far out any attempt to fix the problem would be.

    post edited by sandi- the use of foul, obscene or vulgar language is not permitted on spine health.

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  • welcome to spine health.......first of all, the worst thing that you can do is lay in bed. you have to keep moving, with of course more careful movement, and stretching but laying in bed is only going to make things worse.
    if your primary doctor won't give you another referral to a different surgeon, then find a new primary doctor. one who listens to what you are telling him. symptoms such as you describe, vaginal numbness, inner thigh numbness can be signs that something is wrong, and needs to be checked out by the surgeon. do you have difficulty emptying or controlling your bladder or bowels as well?
    if so, you need to tell whomever you are seeing about those symptoms .
    a herniation with compression of a nerve root can cause many of the symptoms you are experiencing, and injections are one step to getting to further treatment. the lesser invasive modalities must be tried , and failed before the insurance companies will approve surgery......for most of the population, a flare up of back pain is simply that, a flare up.....for some of us, who are unlucky enough, it is more than that, so the lesser modalities are tried first, to see if the problem will resolve on it's own or with minimal treatment.
    as far as pain goes, try ice, and alternate with heat.......which ever helps you more. there are topical over the counter, creams, ointments, and heat patches that do help to reduce the pain some. stretching, mild excercises can also help to reduce the pain.


  • I kindly thank you, and will point out that my mother is a PT aide, and happens to live across the street. I am very aware of all of the walking things, which is why I am not understanding why my doctor and surgeon are doing nothing. I was walking, despite the increase in pain it caused, and staying as active as possible. I did take ibuprofen until I had to stop prior to ESI. I am not supposed to take NSAIDs, as my last 2 Crohns flares were caused by NSAID use. I am icing 20 minutes of every hour 14 hours a day, and have been for almost 5 months. I am doing the stretching exercises as tolerated, which is less and less, so they don't seem to be helping.

    As for the other issue, I have mentioned it to my doctor. It gets worse with any activity whatsoever, and is somewhat resolved by complete rest. Up until I quit driving, I was unable to urinate, period, end of story. Not sure my doctor got that. I had involuntary leakage, at random, which I finally figured out was overflow incontinence. I also shared this with more than one doctor. None seemed the least bit concerned. One of them just asked if it was more leakage than usual, and I said yes, because I don't usually have any. She said that was impossible if my 4 children were all vaginal deliveries, and said it was normal. I explained that it was not normal, didn't happen ever before my fall down the stairs, and wasn't related to coughingm sneezing, etc. Again, I don't think she was concerned at all. I mentioned the numbness, and that it concerned me given that I was left with permanent loss of feeling in my left arm when a doctor failed to refer me in a timely manner to decompress my ulnar nerve, and she told me that it was normal as we age to feel less, especially given the number of children I have. Yes, I know she was wrong. It isn't normal. It's numb, it isn't stretched. It doesn't explain the shooting pain in the thighs and surrounding area, I know. I did have a kidney infection develop, and was able to get it treated at a local women's clinic that didn't require a long wait to be seen or a long drive. They also provided care and didn't treat me like I'm an idiot. They said the infection was likely caused by not being able to urinate, and sent my primary a note saying as much. No doctor wants to take it seriously. I honestly feel like a coroner will find out what was causing my problem long before any doctor ever thinks about finding and treating it. I don't feel like they care. I am usually a timid person, I don't complain. I have been aggressive, I have persisted, I have questioned, and I bring a family member with me to be an advocate just in case, to no avail. I feel very helpless and hopeless. I know lying in bed isn't helping me, other than it seems to make urination at least possible, and it keeps the pain at an 8 or 9. If it didn't hurt so much to walk or sit, I would much rather be doing either.
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  • HesterHHester Posts: 90
    edited 06/15/2014 - 3:02 AM
    You do need to find a new doctor - actually two new doctors: One primary and a good lower back spinal surgeon. A general ortho or neuro is not going to cut it. You need a doctor that does nothing but lower back operations such as one might find at a "back and spine" surgical center. Not being able to urinate is a medical emergency. You could go to the ER at a hospital where you have research a good spine surgery program and complain of not being able to urinate after a back injury. I promise they will take that seriously. What I can say is you do have to move. What helped me years ago was an "ab lounger" exercise chair. I could sit in it and do sit-ups to strengthen my core. There are stretching exercises too especially for discs in the lower back. All that being said, in six to eight months the disc should dissolve on its own.

    Post edited to remove specific clinic by Liz The spine-health moderator team.
    Age 55
    Herniated L4-5 1992
    DDD diagnosed
    Hysterectomy 2005
    Steven Johnsons Syndrome 2008-09
    Gastroparesis 2009-10
    Right ankle and toe reconstruction 2012
    ACDF C6-7 surgery March 2013
    Stroke? Cancer? MS? Who knows! in inferior cerebellum 2013
  • sandisandi Posts: 6,269
    edited 06/15/2014 - 3:34 AM
    discs don't dissolve.........a herniation can resolve on it's own, in time, if it is a small one.......
    toomany cats, you may want to read this article......this may help you .
  • strongly resemble the symptoms of Cauda Equina Syndrome, I would strongly encourage you to find the biggest, teaching hospital near you, and make an appointment with one of their surgeons as soon as possible. Explain to them that you believe you have CES and why.......all of the symptoms. Even the neurosurgeon, if you call and explain the symptoms that you are having, may be able to squeeze you in much sooner.
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