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Please help! Bad leg numbness and tingling sudden onset and v. worried abt it

I'm 20 and in a wheelchair due to muscular dystrophy and osteoarthritis. I had a full spinal fusion in January of 2005 and have had no real complications following this besides leg pain that had been vaguely diagnosed as sciatica and I have been on tramadol for 4 years to manage the pain.

Recently, as in the last 2-3 weeks, the numbness and tingling in my legs have gotten worse. Prior to this, my right leg experienced the most symptoms, hurt the most, was a bit numb on the outside of my leg/foot. Now both legs are numb on the outer sides and I am experiencing severe and sharp pricklike pains that just started a few days ago. I have constant tingling/burning in my right lower leg. I have never had back pain chronically until this started, and for the past few days my lower back has been extremely painful. The tingling and numbness are present even when back pain is treated w/ meds like tramadol, vicodin and baclofen (which help my back but not legs).

I went to the ER twice for this. First hospital didn't know, did CT scan, still didn't know what was up and sent me home. It got worse and a week later, today, I went to a different hospital and was told to see a spinal specialist after being prescribed some pain meds. I am numb in my saddle area and have tingling/pricks in that area, as well. I am scared if I don't treat this soon I will have permanent nerve damage and persistent pain. No indication of bowel/urinary loss. No new weakness in my feet or legs, either.

I moved from GA to NC and I just got Medicaid approved, so I am now only able to get a primary care doc who I can't see until June 18th. I am scared to wait this long! First off, any idea of whether or not this is a dangerous situation, like cauda equina? Secondly, what could these symptoms indicate? The doc at the ER today said my spine was fused in a way that I probably couldn't herniate or slip a disc, but tha tnerve compression was present and suggested muscle spasms in my back. I used to sit in an electric wheelchair and since moving I have not had that chair. Could lack of back s upport contribute to my symptoms?

Sorry for the long post, but as you can see, I am quite concerned about this and it's causing me great anxiety. I can't even sleep at night because of the sensations :( Any help or advice would be much appreciated.

Carley

PS: Another question - is it okay for me to have an MRI with a rod in my back? I feel like an MRI would complete a diagnosis.
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Comments

  • LizLiz Posts: 9,745
    i am sure that you will find your time on spine-health very rewarding. this site is a powerful and integrated system that is dynamic and continues to grow.
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  • KeytanKeytan Posts: 41
    edited 07/02/2013 - 8:46 AM
    deleted
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  • You CAN have an MRI with spinal hardware. Both titanium and surgical steel are safe (I have both and have been in MRIs). This issues with metal occur when it is like shrapnel that is located in soft tissue. If it is attached to a bone, totally safe. IUDs are also safe. If an MRI is requested, the tech will walk you through every procedure you've ever had to be sure you are MRI "safe". so worst case scenario is you make the appointment and then get denied. They won't put you in the machine without being sure you are safe. If your hardware is surgical steel, then the MRI will not be worth your time and I'd highly doubt a spine specialist would order one. This is because it will scatter the image and everything around the steel just shows bright white. Now if you don't have hardware throughout the spine, then that would be different. Titanium doesn't cause this problem.

    A big sign of CES is loss of bowels, so if that happens, go right back to the ER immediately. I do agree with Keytan that you have to be your own advocate. Sounds like you've been through so much. What I hear you describing does sound a lot like nerve pain, yet I didn't see any nerve medication listed... perhaps this could be something you could request to try, for example neurotin. Even if it didn't help before, its worth a "retry" just keep in mind it can take a few months to really work.

    Best of luck to you, keep us updated.
    33yo mom of two. My surgical history...preadolescence scoliosis, kyphosis, and a hot mess.... 5 spine surgeries and lots of items added I wasn't born with (titanium, peek, surgical steel). Guess cremation is out. TSA loves me.
  • superhetoricssuperhetoric Posts: 9
    edited 06/01/2013 - 8:24 PM
    Since I made this post I've been to the ER twice out of pure panic and stress and there has stilll been no resolution other than the doctor prescribed me neurontin and that seems to help quite a bit but the side effects are foreign and I'm still trying to get used to them. I go to my GP Monday and I really hope he can direct me to someone who knows what they're talking about. I have developed an increase in a burning sensation in my genital area, from what appears to be (from Google searches) the pudental nerve. Looks like a lot of my discomfort is coming from my lower S's (not familiar with spine anatomy, but again, Google!)

    Still have control of bowels/urinary functions and the doc did a rectal exam... nothing scary seems to be going on there. Hopefully not CES like originally thought.
    Thanks a lot for the feedback. It will be a few days before anyone knows if I can have an MRI but hopefully something can be done in the mean time.
  • jlrfryejjlrfrye ohioPosts: 1,111
    You can have a MRI with surgical metal in your body. The problems lies in what year was the metal placed in your body? I think if i remember correct the metal has to be 15 years old before they cannot do a MRI. At one point I was in question wether a MRI could be performed because of the age of the hardware in my cervical area. They had to get the part number from the surgeon to determine if it was safe or not. With the metals that are currently used in medical procedures it is safe to get a MRI.
    Good luck and keep us posted
    Susan
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  • KyleFranklinKKyleFranklin Posts: 3
    edited 06/02/2013 - 12:22 PM
    Omg. I am so sorry you having to deal with all this! And you are so young!!!! I can't really answer any of your questions because it seems that you nee to speak to a medical professional, but the website I used to treat my lower right back pain, which can sometimes be caused by Sciatica, is below. I will leave a link to the Sciatica stretches page. Maybe that will relieve some of your pain! Keep us posted. Thinking of you!


    superhetoric said:
    I'm 20 and in a wheelchair due to muscular dystrophy and osteoarthritis. I had a full spinal fusion in January of 2005 and have had no real complications following this besides leg pain that had been vaguely diagnosed as sciatica and I have been on tramadol for 4 years to manage the pain.

    Recently, as in the last 2-3 weeks, the numbness and tingling in my legs have gotten worse. Prior to this, my right leg experienced the most symptoms, hurt the most, was a bit numb on the outside of my leg/foot. Now both legs are numb on the outer sides and I am experiencing severe and sharp pricklike pains that just started a few days ago. I have constant tingling/burning in my right lower leg. I have never had back pain chronically until this started, and for the past few days my lower back has been extremely painful. The tingling and numbness are present even when back pain is treated w/ meds like tramadol, vicodin and baclofen (which help my back but not legs).

    I went to the ER twice for this. First hospital didn't know, did CT scan, still didn't know what was up and sent me home. It got worse and a week later, today, I went to a different hospital and was told to see a spinal specialist after being prescribed some pain meds. I am numb in my saddle area and have tingling/pricks in that area, as well. I am scared if I don't treat this soon I will have permanent nerve damage and persistent pain. No indication of bowel/urinary loss. No new weakness in my feet or legs, either.

    I moved from GA to NC and I just got Medicaid approved, so I am now only able to get a primary care doc who I can't see until June 18th. I am scared to wait this long! First off, any idea of whether or not this is a dangerous situation, like cauda equina? Secondly, what could these symptoms indicate? The doc at the ER today said my spine was fused in a way that I probably couldn't herniate or slip a disc, but tha tnerve compression was present and suggested muscle spasms in my back. I used to sit in an electric wheelchair and since moving I have not had that chair. Could lack of back s upport contribute to my symptoms?

    Sorry for the long post, but as you can see, I am quite concerned about this and it's causing me great anxiety. I can't even sleep at night because of the sensations :( Any help or advice would be much appreciated.

    Carley

    PS: Another question - is it okay for me to have an MRI with a rod in my back? I feel like an MRI would complete a diagnosis.
    Link removed, it is not permitted.Please read the Forum rules
    Post Edited by The Spine-Health Moderator Team

    Kyle
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