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Central Pain from Spinal Cord Injury
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The spinal cord is the part of the nervous system that relays messages to and from the brain. Discuss topics including spinal stenosis, spinal cord injury or damage and treatment methods.

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Central Pain from Spinal Cord Injury

I sustained an injury to C 3, 4 & 5 three years ago. I was paralyzed from the neck down. Immediate surgery was done to scrape out the cord and allow for swelling and fusion and rods were inserted. I was able to slowly recover quite a bit of movement and was beginning to use a cane a year later. However, as I get sronger the spasms and nerve pain have been increasing so that now I am using a walker and can barely walk around and straighten up due to tightness in my back. I am also losing use of my hands due to spasms. I have been to a back clinic, a neurologist, a accupuncture pain clinic, chiropractor, PT, etc. Also my blood pressure gets low at times and muscle relaxer meds make it drop very low. I am on 1500 mg of neurotin and 1600 mg of Ibuprofin?. I don't know what to do next and I am concerned that I will keep going backwards and become severly disabled. Any advice on what I should do?  Thanks.
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620923_tn?1405964489

Hi and welcome to the Spinal Cord C/D forum.

  I am not a Dr, but I am curious as to when ur last MRI of the affected area was? From my own experience with surgery with nerves involved it can take up to 2 yrs for the nerves to heal when there is not the type of injury sustained like u had, so I can only imagine some of what u r dealing with could be healing.....

  The other thing I wonder about is scar tissue developing, have u had a MRI lately?...how about the possibility of a syrinx forming?..were u checked for that ?

Unfortunately I can only imagine how u feel regarding all of this.....

My other concern for u is the low BP, were u checked for a condition known as P.O.T.S.?

  I also wish I had more info to offer...but please keep us posted,

    "selma"
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Avatar_m_tn
Thanks for your response. I have had an MRI of entire spinal cord about one year ago. We will look into P.O.T.S,  tj
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620923_tn?1405964489

  Do u have a copy of the MRI on disk and the report?.....if not ask for a copy of both.

  Have u notices some of these issues new in the last yr?

   Keep me posted

    "selma"
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Avatar_m_tn
I have a copy of the MRI. The issues have increased in intensity since the MRI.
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  I would go for a 2nd opinion...u have the MRI to take along for review....and since u have new symptoms and increased symptoms a good Dr would do a new MRI to compare.

  "selma"
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Avatar_m_tn
Sorry for the delay to your answer. The MRI was done at a Back Clinic. We are changing the dose of my neurotin and some of my activities. If there is no improvement, we will return to the neurosurgeon who did the original surgery. He is considered one of the best in the area. He did x-ray the surgery area last year but we will ask him to do another MRI.

Thanks, tj2404
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620923_tn?1405964489

  Sending good vibes ~~~ and prayers this all works out for u!!

   Do keep us posted

    "selma"
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Avatar_m_tn
I'm a c5 c6  quad after a  gymnastic accident i've been diagnosed with POTS tried all the drugs most the side effects were worse than the low blood pressure thank god i have a doctor who thinks outside the box. we did a reverse use a drugs side effect to cure a problem adderall (adderrall) not sure the spelling it's for ADHD it raises you blood pressure my BP used to be 65/45 now i'm 110/70 and thats only taking 30 mg a day hope it helps

                                                                           cory moyer in PA
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620923_tn?1405964489

  Cory- so glad to hear ur Dr was able to figure that out for u and it is working...my BP was always low, but since I had my surgery for chiari it is close to "normal " ranges...but still on the low side.....

Thanks for sharing what worked for u, as it may help someone else : )
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