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LSS, DDD, and retrolisthesis

Hello! So let me explain my situation..I'm a 21 y.o. female, 110, 5'0. For the past 2 months I have been having back pain. It all started after I had gotten out of the hospital after having pyelonephritis of my right kidney. I didn't think anything of the back pain until it didn't go away 2 weeks later; luckily I had a follow up appointment with my PCG. She told me my back shouldn't be hurting and ordered X-rays. I got them done probably 5 days later, about June 15th, and waited. When the results came in, they told me I had wedging at my t11/t12. I was generally confused as no one explained why my ls was hurting. My doctor then ordered me an MRI. Went it and a few days later, I found out I had spinal stenosis, the wedging and retrolisthesis of my L5-S1. I said okay, elaborate please. They told me what it was, to find an orthopedist. So, within the next weeks I tried to schedule appoints and I got one about 2 weeks later. When I went for my exam, he did the normal exams. I told him I had less feeling in my left foot. He didn't do much about it. I had to beg him for something for the pain, he put me on gabapentin. By this time, it had been about 3 weeks and I could barely walk without pain, I had to shuffle around. They recommended I go to a neurologist, which, even with my MRI's, it was uneventful; he didn't tell me anything new, just told me it "wasn't that bad."
I found out (on my own) that the retrolisthesis along with the congenial stenosis, is pinching my sacral nerves in both legs, bringing on the cramping, tingling etc. It's weird sometimes because even before I found this all out, the tops of my feet would feel as if I got a mild sunburn and it's been happening more frequently. Most likely nerves again. I have a second opinion neuro app this Friday, the 8th, and I hope I get some new information and real tests run on me. This is debilitating to live with and I've been out of work since may because I stand on my feet. They did recommend me to a physical therapist, hopefully I can start by next week but I had gallbladder removed a month ago, so I guess they will let me know. Has anyone else had success with pt? Or have you had to get ESI, or spinal fusion? Sorry for the rant haha

Thanks so much in advance! It's much appreciated!

Alex C.


  • LizLiz Posts: 7,832
    edited 08/04/2014 - 3:45 AM
  • You are young and in good shape. I hope the new neurologist and your physical therapy will be able to help you. Take care, MaryAnne
    Take care and God Bless,
    Mary Anne
  • sandisandi Posts: 6,343
    edited 08/12/2014 - 6:41 AM
    The problem with self diagnosing is that you have no idea of what your real diagnosis is or the severity of it, compared to what you read. If the neurosurgeon hasn't determined that the stenosis is congenital, how can you be sure that it is caused by a birth issue? The degree of stenosis matters as well as the location of the stenosis ( forminal or canal) when it comes to symptoms, and treatment options. Foraminal stenosis, as with any stenosis, can be mild, moderate or severe. Treatment for stenosis varies depending on the severity of it and if there is contact with a nerve root or the thecal sac in the canal. It sounds like yours is foraminal, so injections may be offered to see if that eases the nerve symptoms. Since the surgeon told you that it is not that bad, the stenosis must be mild, and Gabapentin is a good nerve pain medication that often eases the pain. Don't stop taking it suddenly.
    What degree of retrolisthesis is present?1st, 2nd , 3rd or 4th?
    If I were you, I would wait until you see the surgeon and ask him about what options are available for treatment. Unless the forminal stenosis is severe, I am not sure why you can't work or are shuffling when walking when you apparently didn't have those symptoms prior to your finding out about the spine issues? Mild foraminal stenosis usually doesn't cause those type of problems shuffling and not being able to walk

  • Alex C.AAlex C. Posts: 10
    edited 08/22/2014 - 6:05 AM
    I posted this when I went to my first neurologist. When I knew barely anything about my condition. I went to a different neurologist and she did every test under the sun. I knew it was congenital when I found out I had it (3 months ago) because I was born at 6 months and that it is in fact a birth defect. It's canal stenosis and it is moderate to severe. After I got my first MRI results back and my first nuerologist didn't know jack, he sent me home with meds and told me I'd be okay. I got that second opinion last week. She told me that I shouldn't be in this much pain if it was only forminal stenosis. No one has told me what grade the retro is but I see her this week so I'm asking her. She did an EMG and I had higher than normal reflexes with a gait imbalance while tandem walking and now when I walk regularly, I have a limp. Like I had said before, I have tingling, the tops of my feet feel sensitive to touch. I have gotten horrible sciatica over the past month. I can barely stand now for 10 minutes. I found out I have spondylosis of my L5-S1, with nerve impingement. The pain travels from my hips down to my lower thighs and sometimes my left heel. I have urinary retention, which is not good for me since I had a kidney infection back in may. Started to have neck issues as well last month with swelling and severe pain. The pain goes from my neck to my arm or to my 2-4 fingers on my right hand. I have dropped things (like a knife) even with a tight grip. Like I said, I can barely walk or stand for 10 minutes so there is a reason I can't work (on my feet all day, not allowed to sit down my boss is an EDITEDsometimes) and I shuffle around when I walk. I have now gotten keen to taking a motor cart when I shop because I can't walk around or my back and neck start to hurt terribly. Definitely not imagining any of these symptoms, because they're coming on pretty EDITED fast. I've had tremors for as long as I can remember but the gabapentin, which I still take 3 times a day, doesn't seem to be helping for the tremors or nerve pain. I got a cervical MRI (to rule out cervical stenosis) and a brain MRI done, recommended by my second neurologist because my symptoms were changing rapidly within the time I saw my first neurologist. I should be getting the results back within the next few days. I did start physical therapy and it's very painful. My sciatica is just getting worse as the month goes on so I'm thinking about asking my therapist to slow it down a bit. Sorry for the rant! Thanks for all the advice and encouraging words!!!

    Alex C.

    Post edited by Sandi- the use of foul, obscene or vulgar language is NOT permitted on Spine Health.

  • Alex,
    Prematurity is not an automatic determination that your stenosis is congenital or a birth "defect". You are jumping the gun a bit. Stenosis can be congenital or it can be degenerative. In most cases, it is degenerative in nature. The measurement of the canal or of the foramina is the determining factor in the severity of the stenosis.
    All spondylolsis means is inflammation in an area of the spine, usually related to arthritis. http://www.spine-health.com/conditions/arthritis/bone-spurs-osteophytes-and-back-pain
    Gabapentin is not meant to treat tremors, it is used for seizures and neuropathic pain. The tremors might be indicative of another medical condition that requires diagnosis and treatment and probably should be evaluated by a neurologist who specializes in diagnosing adults tremor disorders.
    Physical therapy is commonly painful at first, and as you work through the excercises and stretches, it should become less painful as your muscles are strengthened. It might be a good idea to talk to your therapist about the possibility of aqua therapy.

  • Hi Alex. I have suffered spine problems for 8 years now. The end of June I had kidney infections & gallbladder removal. It's now the beginning of September & my spine has just started to calm down from the ordeal. I know the speed at which your problems are progressing must be terrifying & I hope your new specialist will have some answers for you. I just wanted to calm your fears a little, or at least give a possible explanation for why things could be getting so bad so fast. The process of removing your gallbladder can be brutal on your whole torso, it commonly causes severe pain in shoulders, arms etc. It puts a lot of pressure on everything (including your spine) inside your body.

    I hope you get some relief & suggestions for treatment soon.
    Osteoarthritis & DDD.
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