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Pain worsening after spineal cyst removal

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johnno11
johnno11

A year ago I developed severe lower back, thigh, groin, inner upper leg, and knee pains. A mri scan revealed a cyst on my spine, and after 2 failed nerve block injections I had an operation to remove the cyst  on december 17th 2016.

Now, over  the last eight weeks the pain has returned and is much worse than before including pain in my upper back which, my gp. said the pain could last for up to 6 months before it improves.

Is any body experiencing facing the same situation.  

0 likes, 7 replies

7 Replies

  • DJ1976
    DJ1976 johnno11

    Posted

    Hi thought I was reading my problem.  In 2014 after a minor hit from the rear ar accident I developed a 7mm cyst and when the Dr. could not drain it, he operated and removed the cyst.  Since that surgery the 3rd in the series, I have had nothing but the same pain you are discussing.  Did all the pain management injections to no avail.  Then my pain management Dr. suggested a nerve stmulator trial.  The first was the NEVRO.  After 5 days it was removed as I had no relief at all.  They used the tonic stimulation which is constant up and down the leg and back and then the silent mode where you felt no tingling and jolt at all.  I was in tears when we removed it and was the only patient that never achieved any results (positive that is).  They tried every combination they knew and then some.  So she says "Not to worry, I have another trial for you".  Thank God for insurance, either good or bad as it helped.  

    I just completed BURST by St. Judes Hospital.  It is the same type but with varying and different results.  After a 7 day trial with some major wipe out of the program of the stiulator ad a total reprogramming, I achieved a substantial lowering of my pain which was constant and non stop for 3 years.  I was amazed.  

    I am now tentatively scheduled for implantation of a permant device on 3/2,  A little nervous as I did not think it would happen so rapidly.  But this way I don't have time to think and worry about it.  May I suggest that if you do not have a pain management Doctor you find a good one.,  Google BURST and NEVRO AND READ UP on each procedure and then talk to you physician about a trial for either one of these.  I live in NY so I have access to either one.  The pain management area should decide which one they think might work best for you, if you have exhausted all other treatments that might help.  After talking to the surgeon who will do the surgery, she says they have finally figured stimulators "are not a one size fits or helps all."  It is all trial and error.

    I wish you all the luck on your quest for some relief.  Be ope and honest with your Doctor and your expectation of pain relief.  Everyone is different.  

    Dee

    • johnno11
      johnno11 DJ1976

      Posted

      Many thanks Dee,     and thanks for your story     I have to see my surgeon in two weeks time, and will discuss my increasing pain with him.

      The cyst on my spine was on L2/3 nerves, I knew there would be pain after the op. but not increasing pain. Since my problem started over a year ago I have been takeing pregabalin 100mg twice a day, with the back up of zappain, since the op. my gp said that the pain could last for up to 6 months, and has doubled the pregabalin and I am more reliant on the zappain.

      I failed to say that I am, untill now , a sporty, healthy, fit 75 year old man

      and just hope that this will hopefully get better.

                                                                                     John.    

  • jessica_78456
    jessica_78456 johnno11

    Posted

    Yeh I would say give it a bit longer but if it becomes so bad take yr self back to A E . Remember yr now going have scar Tissue from your operation, wich will affect nerve s
    • johnno11
      johnno11 jessica_78456

      Posted

      Many Thanks Jessica, please can I include you, into the reply that I have  written to Dee.

                                             John.      

  • NatalieRP
    NatalieRP johnno11

    Posted

    Hi there - I had exact same symptoms which led to my tumor removal and lamenectomy a year ago. The pain improved significantly but have started getting pains in my leg and have a very sore arm which I can hardly move at all. I am seeing my neurosurgeon this Friday and will find out what he says. I was supposed to go for a MRI 6 months after but never did because they said the tumor may re grow or may not have been fully removed and the hospital I had the op in - Johannesburg, South Africa, was the worst and I was scared but the pain is too much to ignore it now. I would definitely encourage you to go for an MRI to see if in fact the tumor has come back or it could merely be a nervous system thing. Good luck
    • johnno11
      johnno11 NatalieRP

      Posted

      Many thanks Natalie, when I saw my doctor last week he did suggest another mri, so I will see how I get on with my surgeon........ 

       

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