Back Pain :: Extreme Lumbar And Leg Pain

Mar 11, 2014

I am a 41 year old girl with Chiari Malformation and Back Pain and I have Postural orthostatic tachycardia syndrome (not really related to my question issue here). For quite awhile I have had back pain (upper/cervical) and lower. I tried to tell the doctors but they always told me it was nothing. Then it got severe one day. I don't know how to explain it but it felt like something happened in my lower back area. The pain was in my back and leg (left side) and it was not in my butt at all. Some days the pain in my leg felt like a stake was being driven in it. Otherwise most of the time it was just plain pain (don't know how to explain it - it was 2 types of pain). Well I finally called my doctor and I had an appt and he got me a couple of MRI's and said that I had a herniated disc and that a chunk broke off of it (he gave me copies of my reports as well)and the chunk was lying elsewhere. Well to make a long story short, he sent me to an Ortho Neuro who ended up doing a surgery...he was like you can do PT (which would mean I still had to live with it), Live with it or surgery. I didn't want to live with it. Well, it took awhile but after so many months/weeks I ended up having PT after the surgery.

Well during PT my pain went from being bad to worse! I cried during PT and after my sessions. I had a couple of weeks here and there I had it put off because of my neuro appts out of state, but it was not long periods of time. Anyway, my PT told me I needed to stop my PT sessions and contact my doctor because they could tell that I was having a ton of pain and I was not getting better - only worse. I did let my ortho know and waiting on my appt I let them know that on some days the pain would spread (it was kind of like radiating) to my right side. Apparently they assumed I meant it was on the right side. During my appt after my MRI, he kept saying the right side - that my results showed nothing about the right side and he left it go at that. I kept trying to say it was on the left but spread to the right (radiated on some days). He did not listen to me. I let him know that my leg was weak and I kept falling. Still didn't listen. My appt was directly after my MRI so he read it and didn't have the radiologist results. I was so devastated as I had no idea what was going on. I decided to obtain my results and after I did I had an appt coincidently with my regular doctor and I told him about my appt and showed him my results. He seemed concerned and told me that I needed to contact the ortho and ask them to explain my results and go over them with me. He said I had a right to have them explained to me. He didn't because he was not the one who ordered them and it is not his area anyway.

I did again and they said that the results got misfiled/lost in a folder somewhere. They called me back a week later and set an appt up. I explained to them again that it was my left and it had just radiated to my right. It has always been my left said. I explained I was falling and my leg is now like a noodle and it is scaring me. I am so afraid I will not be able to walk one day. I am afraid to go anywhere by myself due to the risk of falling, as I have fallen stepping out of the car and just walking about a few feet or so. My leg just gives out on me. The pain is excruciating as well. Well I went to my appt and they cancelled it on me and I am scheduled this week. As usual I am sure they will say there is nothing on there (as they have before - every doctor is different it seems telling me what could be). Well, one thing my regular doctor was concerned about was other than my disc is herniated again, is that it has something on there he does not know what it is supposed to be is that it says: enhancement noted in the left erector spinae musculature. That is the concern. Anyone ever see this before or know what it could be?

The last thing is that again my disc is herniated and compressing the sciatic nerve. The rest is not concerning as it is normal they said: Enhancement in the surgical bed as well as along the left side of the thecal sac and encasing left S1 and S2 Nerve Roots. Although it has been 9 or 10 months since my surgery on my lumbar area, they said that is normal to have.

I am really worried about the pain and the falling - the fact that my leg is like a noodle and only getting worse. I am so off balance and more. I have a ton of symptoms but they say the other stuff is neurological and related to my P.O.T.S. I have been more nauseated and throwing up more than ever (although it is not causing me to lose weight, because I don't walk as much because of the problem with walking and the pain from exercise (as found out in PT). I assume the nausea and vomiting is from the extreme pain. I am so tired of being ignored by the doctors. I don't think my regular doctor would tell me I need to go back to the ortho if he didn't think something was wrong too. I feel like crap and I just want to feel better. I may never get better from the P.O.T.S. or the Chiari/Cervical pain, but there is hope that someone can fix my back problems. My walking is important to me because I love to take walks with my family and I love walking in the snow, etc. I want to be able to do more things. I can't go see the specialist (for my neuro stuff) until I get this taken care of, as they are out of state.

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Nine months ago I hurt my back with an improper lift. Unlike several other back sprains, this one won't go away. Low back pain, and bilateral sciatica. Mostly dull pain, but shooting pain down legs when I bend backwards, or step into a hole that jars my back. Doctors have to play by the insurance company rules, so they treat with meds, then Phys Therapy, then guessing, and before you know it you have been hurting for 9 months. So I had an MRI that revealed a herniated disc with central canal stenosis and 2 other bulging discs.

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My surgeon wants to do a foraminotomy because I have radiculopathy on L4-L5 and then do a spinal cord stimulator for the pain. He isn't worried about the cyst...said it isn't the reason for my sever back pain. From what I have been reading, all of my symptoms sound like its the cyst causing at least some of the pain. Am I wrong to second guess his opinion? I just don't want to have these surgeries done and then later down the road turn around and have to have the cyst removed.

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I cannot take morphine or derivatives due to it making me feel like I can't breathe so the anti epilepsy drugs are next try.

Dr gave me 300mg capsules but having taken one today I have asked to be given 100mg capsules and I will increase very very slowly. The side effects with one 300mg capsule was spectacular and I could not cope with this again let alone increasing the dose but can only hope that starting very low and only increasing very slowly I can tolerate

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