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Spinal cord surgery

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christine_14512
christine_14512

I had fluid in my spinal cord and had to have an operation to release the fluid.  This was 6 years ago.  I was left in continuous pain from the moment i woke from surgery,  I feel as though i have been severly burned on the whole of the upper left  part of my body. But at the same time the muscles down my arm and in my neck and shoulder give me intense pain like i have been hit by a truck.  I was given pregablin initially, but it had side effects and didnt help much.  My pain management clinic changed me to Gebapantin.  Which is what I take now.  I also take a combination of paracetamol and tramadol which was added a few months ago as my body had become too used to the Gebapantin, and I did not want to increase the Gebapantin ( my weight ballooned on these meds and  I do worry what secondary problems these meds can cause in the future).  I take these meds on time and it has helped.  I have also been taking 30mg Nortryptoline at night to help me sleep.  Pain is so debilitating, and Depression is an easy place to find yourself.  Even feeling suicidal at times.  It is important to tell someone if  you feel like this, just say it, I know its hard but please talk to someone if the meds and the pain are too much.     I also find any form of excessive emotion, such as stressful situations or exciting situations make my pain worse. Does anyone else find this ? I tried acupuncture but this did not work.  I had to give up my job because of the pain, It has devestated my life. I have never met anyone else who has had the surgery I had. Pain is a lonely place, and this dicussion group is so helpful, and comforting. It has made me realise other people do understand, and its good to share our experiences.   Thank you everyone for sharing. I wish you all the best

0 likes, 7 replies

7 Replies

  • sylvia83392
    sylvia83392 christine_14512

    Posted

    So sorry you are in such pain.  I had a tumor on my thoracic spine and told everyone

    that nothing would ever be painful after that .....it's unbelievable and devastating.

    I tried gabapentin and lyrica and now take 25 mg. nortriptyline.  My surgery was early Jan. and I still have trouble with my feet and walking ...... the nerves are all 

    screwed up!  I also know that I had so much pain knowing people just didn't get it...

    some didn't believe me and others had no idea of the type of symptoms this can produce.  I also tried acupuncture before I knew I had the tumor.

    Any type of neuropathy can be hellish and it's easy to get depressed and overwhelmed.  Chronic pain changes you and it's hard to focus and stay positive

    so you really need to reach out for the help and talk about this.

    Hope things get better for you.

  • joh13240
    joh13240 christine_14512

    Posted

    I know you're pain. I have been in so much pain that the dr was talking about giving me methadone. Depression is very common and at at times it sneaks up on you. Its like a back coud hovering waiting to drop down and emearse you.

    lucky I have a support group of family with a very special dog that keeps me company when their is no one else around or in the middle of the night.

  • elizabeth20203
    elizabeth20203 christine_14512

    Posted

    Hi I am so sorry your suffering so much. I do not have your condition or suffer the same pain as yourself but do understnd pain. I have nerve pain after having two knee replacements on the same knee. I had my first one done at 39 as i have had septic arthritis from the age of 11 and i have never met anyone that suffers septic arthritis. I have osteo arthritis in the spine now and my other knee also. I am in constant pain, can hardly walk now and sleeping is erractic. I take Naproxn, Gaberpentin, Nefopam, codeine and parecetamol and i am still in pain. Nobody understands how bad it is, it's difficult for people who don't suffer themselves. It causes depression as mental and physical health goes hand in hand. it's a constant battle. Here people understand because in one way or another we are all suffering. 

    Elizabeth.

  • christine_14512
    christine_14512

    Posted

    Hi  Sylvia, John, and Elizabeth

    Thank you for sharing your stories with me, they make me feel very humble.  So many people living in pain and not being understood.   Family, freinds, partners, they all care, but there comes a point where they dont need to hear the same old " Im having a bad day today, the pain is bad today" etc etc.   Do you find you keep quiet even when its bad, because you dont want to hear yourself saying it again?

    It's not easy is it?, for example, last night i was supposed to meet up with my darts group, but for some reason my medication made me feel drunk and very tired yesterday.  My partner went without me because I just couldnt face being sociable, and fighting the meds.  This has happened several times, and I then feel they must all think "Oh she's off again"  people cant understand constant pain.  They seem to think, it should have got better by now, pull yourself together.  They cant see it, so it is'nt there.  Pain clinics have not really helped, even doctors seem at a loss as to what to do.  It is good to be able to talk when we are having a bad time.  Swop our findings about different medications, and offer support to one another.  Have any of you found your weight has shot up on these meds??  I am also addicted to nortryptaline now.  When I tried to come off it, (and I did this gradually), I found myself in a very bad place.  I was so depressed, I really didnt want to wake up in the mornings.  I went back on it and i was back to myself again.  Have any of you discovered these concerns?

    I have found if I keep to my medication same time each day, without fail, then I can control the pain most of the time.  keep occupied and busy as this also helps, but no pressure  or over excitement,  over excitement /pressure seems to aggrivate the condition. I do understand your pain, and if you ever want to talk please come on line and share your feelings.  Be kind to yourselves.

     

      

    • sylvia83392
      sylvia83392 christine_14512

      Posted

      Please go easy on yourself Christine!!!  Yes, I gained a lot of weight quicky on Lyrica and on Gabepentin.  They both were useless for me.

      I knew the weight was from the pills as I looked like I was having triplets..

      and very uncomfortable.  My face, legs..my entire body looked swollen and after the surgery it began going back to normal.  All my terrible symptoms left but the pain /tingling/cold/in my feet and some tightness in my legs.  I still have problems walking.  

      If your friends are not supportive, stay away.  It's difficult for people to understand this or any type of chronic pain.  Try to stay as positive as possible as I believe this helps so much.  Certain days will be difficult.

      Hang in there and when you don't need the nortriptyline you'll stop.  While you have pain and depression, stay on it as it works on both.  I try not to tell my family when it's bad....and truth be known from where I was a few mths. ago to now is day and night.  I can enjoy life again.  Again, for anyone reading this  MY NERVE PAIN WAS A TUMOR ON THE THORACIC SPINE...IT WILL SHOW ON AN MRI BUT NOT ON A LUMBAR MRI.  INSIST ON MRI OF THE ENTIRE BACK!!!!

      CHRISTINE, hope your days get better and try to be positive.

    • christine_14512
      christine_14512 sylvia83392

      Posted

      Thanks Sylvia   I am quite a positive person, but sometimes, just sometiimes it all gets too much and that is when sites like this help.

      I am on medication for life and the nortriptolene was not given for depression but to help me sleep.  When I tried to come off them, thats when I became depressed.  There is nothing more the doctors can do, my spinal cord was damaged when the surgion released the fluid. I was told the pain was for life.  I am so glad you are going from strength to strength, I guess you will always have empathy with chronic pain suffers after your ordeal,  and I will too.  Thank you for taking the time to reply to me, it can be a lonely place as you know.  Im going to ask for a medication review and try to come of the Gebapantin,  Wish me luck.  If anyone out there has tried a neuro drug that doesnt increase weight can you please share with me.  All the best everyone, keep smiling. 

    • sylvia83392
      sylvia83392 christine_14512

      Posted

      Hi Christine

      Stay positive.  The nortriptoline was given for sleep but it is also given for

      depression and pain ...they discovered it worked on many things so it may have had tons to do with your depression.  

      Good luck Christine.

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