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Thread: Dr Wise, anyone...please...feeling desperate

  1. #1

    Dr Wise, anyone...please...feeling desperate

    I am desperate and scared, and I hope Dr Wise or anyone can offer some insight. I had blunt trauma in the c3/c5 and c5/c7 areas followed by fusion at c3/c5 and laminectomy at c3/c7. In 2005 I had some tightness/crushing in thighs, biceps, and across torso (there are other issues, but the following is what scares me): The tightness/crushing has continued to expand consistently, but recently; it’s gotten so much worse at a very progressing rate. I can do simple things around short distances doing activity like pick up clothes off the floor or even shave …..and everything tightens up even more. What happens now is that the tightening doesn’t return to what it was. I now wake up at night wanting to scream from feeling like I’m being crushed. Before, I could go short distances with a walker; now, I’m having all I can do to shuffle my way to the bathroom. There’s even been a big difference from two days ago. My body is now very tight/crushed from traps to feet….and who knows where it’ll be in another week, month, or year. It’s not spasticity, and my doctor has no answers other than to say I’ll probably continue to get worse. I would so appreciate any opinions as to what might be going on.

  2. #2
    What type of doctor are you seeing now? What are you taking for pain? Do you have anything else you take for breakthrough pain?

  3. #3
    Senior Member
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    Why do you say that this isn't spasticity? I will sometimes get that crushing feeling ..... like an elephant on my lap. Basically from my level down. For me I DO think it is my high tone. It happens much less now that I have that mostly under control.

    And thinking ..... if this were related to spasticity, higher spasticity (tone) is often related to something else. UTI, torn acl, infected to, blood clot, whatever .... there are just the ones I have done.
    T7-8 since Feb 2005

  4. #4
    I understand the feelings of scared and desperate...although I'm a caregiver...(oh how I hate that word...) and cannot relate to your pain personally, when my son (c4-5) would say it felt like a cement truck was just pouring cement on his entire body or his legs were on fire, I cried quietly because as a mom I was determined to make the pain go away and I couldn't do anything...we finally found a wonderful doctor that knew her stuff about central pain and has his meds adjusted so he isn't in the realm of those 10+ days. Doctor's that tell you that you'll continue to get worse without giving you some sort of positive feedback so angers me...never give up on HOPE...and believe in miracles, they happen everyday! sending you some healing hugs, judy

  5. #5
    Senior Member Josh A's Avatar
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    Hope this helps

    what type of doctors have you seen? i'd recommend a specialist meaning not just a neurologist but a rehab/sci neuro. even though its not an actual spasm by definition it could be intense tone or muscles, tendons, ligaments contracting. its difficult but you being so scared could make it worse[anxiety,anticipation,even some signals being sent through your spinal cord]. i have neuropathic pain and have tried tons of nerve pain meds, pain killers stretching as far as methadone 15mg[which was just added yesterday], i also had a nerve release done by a plastic surgeon specializing in periphrial nerves. i'm only telling you this about me because i'm scared to death, and looking for answers cause NOTHING has even taken the edge off. trying to stay calmer and concentrating may not solve your problem but could help. also about the meds baclofen works wonders i wouldn't go as far as the pump yet. mention these to the doctor botox injections for sure, valium, or zanaflex. depending on what activities you can do try fatiguing the flexors[ biceps, forearms, hamstrings, abs, calfs, etc..] by pulsing them w/ electrical stimulation, assisted range of motion by cycling or stretching. hope this wasn't stuff you already know and helps.......good luck

    josh
    feel free anyone gclifter82@yahoo.com
    Last edited by Josh A; 11-15-2008 at 04:02 PM. Reason: type o's

  6. #6
    Senior Member Josh A's Avatar
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    ooops

    funny, i type slow. so when i started replying it was just me. now i feel goofy repeating some stuff you guys said, haha didn't mean to.

  7. #7
    Quote Originally Posted by josh a View Post
    funny, i type slow. so when i started replying it was just me. now i feel goofy repeating some stuff you guys said, haha didn't mean to.
    Don't worry bout it. Happens to everybody!

  8. #8
    Thanks so much for your responses. I've been seeing a neurologist.....last two weeks ago I went to Cleveland Clinic but have not heard back from my doctor (needed to review latest MRIs). I'm currently taking baclofen 40mg x 3, Lyrica 200mg x 4, and 7.5 vicodin as needed. The higher increase in the severity if the tightness/crushing seemed to follow an EMT test...seems the more the nerves get excited the worse I get. My doctor ruled out spasticity. My muscles are not contracted. I can deal with the pain aspect of this....it's the fear that with the speed this is changing, I'll be tied to a bed in no time. Thanks again...I really appreciate your feedback

  9. #9
    Sounds like you are in alot of pain.
    Not familiar with EMT test, could you mean EMG (which is a test of your muscle and nerve electrical activity)? How did the neurologist reading this test explain your symptoms.
    But I see you are on baclofen which is for spasticity and unclear why they ruled out spasticity. Is the doctor familiar with SCI conditions?
    I recommend you call the neurologist at Cleveland Clinic back as 2 weeks should be ample time to review MRI's, especially when you explain your situation. I would be persistent.

    An alternative would be to get all your records and see a pain specialist who is also familiar with SCI.

    SCI Nurse

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