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Can’t stand up straight anymore Anyone else out there that have

 I can’t stand up straight anymore. My head feels real heavy. I have a fusion at C 1  C 2  . It’s gotten worse over the last year.  Shoulders feel real heavy. Anyone else out  that has this problem?  Any suggestions on exercises or other help. I am hunched over. Take care And God bless

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  • MikethepikeMMikethepike MIchiganPosts: 668

    Just thought I would run this through  One more time, this heaviness feeling is getting the best of me. Take care God bless 

  • Mike, I don't have that issue but find myself hunching over when my back is really bad, makes me feel like I'm about 90 years old. I think it's a protective thing for me but it only makes things worse. I saw a chart at PT once that gauged how heavy our heads feel when we hunch over so I can only imagine how your shoulders feel. I suppose you've tried PT? In the least they may be able to give you some gentle exercises to strengthen your neck and shoulder muscles, just a thought. I know others have had bad experiences with PT but I don't know what I would do without it, just have to find the right one. 

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  • nutcase007nnutcase007 United StatesPosts: 953
    Mikethepike - How long is it since you had your fusion?  Have you had any recent imaging?  Something does not sound right.  I do not have experience with a C1/C2 fusion, just everything fused below that level.

  • Mike

      You recently had mris done right ? Atleast I thought that what you told me I'm sorry if that wrong.

      When your saying your hunching  exactly were are you feeling it ..is it your head leaning forward or your upper back ? Or both ? 

       I developed kyphosis after my first surgery which caused my upper back to round forward and I developed a hump at the base of my neck right were it meets the shoulders and it caused me to be lean forward in a hunchback way....is that what happening ? Or is it that your muscle feel weak and it's hard to keep your head up ?

      Have you told your doctor ? I think you really need to contact him.

  • nutcase007nnutcase007 United StatesPosts: 953

    Mikethepike - I hope for your sake you have an appointment with a spine specialist scheduled in the near future.  

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  • Good day Mike,

    After my C1-C2 fusion my head is still really bobblehead like, and heavy feeling. The more I read the more we share a lot of things going on. I do have kyphosis is my middle back and some coccyx issues going on that makes my stability even worse now.

    I hope we all have a good day. 

    Thanks and God bless

  • MikethepikeMMikethepike MIchiganPosts: 668
    edited 05/21/2019 - 4:38 PM

     Thanks for all the responses. 

    Joann I’ve had physical therapy  inpatient and outpatient quite a few times over the last 5 1/2 years. I have  very stiff muscles in the neck plus some atrophy .

    007  in January I had an MRI of my brain, cervical neck, and lumbar. They have found no changes in my MRIs since my accident 5 1/2 years ago. I  think I have had four MRIs done since the accident.That’s what gets me no changes whatsoever but  muscle spasticity and very tight stiffness throughout my whole body  has gradually and slowly have gotten worse From my head including  my whole back of my head around the ears and all the way down to my belly button is stiff and tight muscles . Sometimes my stomach feels like I’ve done 100 sit up’s. It’s very hard just to stand up straight and a lot of the time it’s in possible unless I’ll grab something and pull myself up straight. I’ve been trying  to work my core muscles more but they just Tighten up.  I have found that I would guess 90% of the time the doctors just brush off the fact of having Myelomalacia.  In fact every physical therapist that I have went to didn’t even know what it was, they had to Google it to find out. Also  The doctors never told me I had it. How I found out was I read it on  the report and ask them about it.  They explained it has a soft spot on the spinal cord. I had one neurosurgeon explain it to me that there is nothing you can do such as put something in or take something out.  He also said I have a lot of damage in that area, and that I am fortunate that I did not die or become a quadrapalegic.  When my accident first happened and after the fusion there was no spasticity, pain, nerve pain, or other problems for  A bout a month. Then for the next two months is when the nerve pain  and other pain started happening. I also have a condition where my body does not sweat at all.   Well should be hunting that’s my History. I should have put this under your heading Ben, Sorry Take care and God bless

  • Every minute seems to be different right now, nerves, pain, spasticity, I have some stiffness but I hope its more from moving so much. It all just keeps me wound like a hundred tops... Really curious what next MRI will show. Neurosurgeon seemed really disappointed that I had the symptoms that I showed at the 6 week post op appointment. At that point he mentioned Cervical myelopathy to his student and my wife and I. Still no mention of the Myelomalacia that my first MRI shows. Even the reading says moderate to severe myelomalacia. Not sure why it hasn't been talked about. But I know it will be at the next appointment. 

    Thanks everyone

  • MikethepikeMMikethepike MIchiganPosts: 668

    Hi Ben, Doctors don’t really explain it thoroughly to patientsHi . I really don’t realize why. One Physiatrist stated it as bad white matter because it shows up that way on the MRI. Good luck getting  a good explanation. Ask if you can get a written definition of it.

  • Written proof... I think that's probably asking a lot. LOL ( but I'll try )

    It sounds like there really isn't a lot of answers or for myelomalacia diagnosis.

    I'm sure I've read most of what everyone else has about it, which isn't much. My progression seems to be on a fast track. I am still mobile, Thank God, but everything is getting worse, including my gait. 

    With everything I have read and what I am feeling, I am getting really scared about the outcome of this. Not knowing or having any real understanding is what makes it all worse.

    Really grateful to be able just write these words, it helps. Thanks

    God bless 

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