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stroke during aneurysm repair central pain syndrome

Posted , 4 users are following.

steven945563
steven945563

my life took a twist at the drop of a dime I'm 40 years old. I was told there was a healthy patient for surgery my diagnosis was aneurysm thoracic repair I sustained a stroke during the operation the stroke has disabled me and the pain is relentless I have central pain syndrome from the thalamus stroke I tried every medication the burning lightning pin feeling pain is relentless and horrible I've tried gabapentin nortriptyline nothing seems to be working does anyone out there have a suggestion as what I could do as the stroke has debilitated myself left side peripheral vision loss.hparalysis on the left side., stroke affected the regional of thalamus and cortex excruciating pins and needles burning pain. before all this I was a very active person who exercise and did not smoke or drink.

1 like, 11 replies

11 Replies

  • mark35729
    mark35729 steven945563

    Posted

    Steven,

    sorry to hear about your stroke, i had mine 6 years ago during a hernia surgery, i didn;t get any thelmic syndrome  pains until 4 moths after the orginal stroke. i use Cymbalta. it is for my tremors and depression. i am not sure how well it works on my pain as i still get pain. My depression is controlled pretty well. I also take amitriptyline. some researchers think it helps with the pain.

    i'm not sure if it works on my spasms, but it really helps me sleep.

    i will keep you in my thoughts and prayers. hopedfully reasearches will come up with something to help you.

    Mark Janko

    • steven945563
      steven945563 mark35729

      Posted

      Hello it's been quite a while since I've checked this but I'm sure glad I did wanted to thank you for your kind words and for your thoughts and prayers it's been quite a roller coaster ride for myself I have been in excruciating pain. I have tried narcotics every type of medicine just can't find the right one.
  • Bob_C
    Bob_C steven945563

    Posted

    I reccomend that you seek a neurologist ASAP, and one that is current in their treatment of stroke therapy.  I have been using the VA as I'm a Vetran, but should have been more active in seeking other help.  The highest reccomended dose of Gabapentin "3600mg/day" just barely keeps the pain "At-Bay".  You may need more, which wii probably only be prescribed by someone who deals with this horrible debilitating pain on a regular basis.  I also take tramadol "400mg/day", but it is not always needed.  My horrible pain started 3 months after my stroke on May 28 2014 and today is the first day that I've been able to stand the pain for an entire 24 hour period in the last 16 months.  Best exercise is definately walking, walking, walking.  Take Care and Be Very Brave! 

    Bob Combs

  • Bob_C
    Bob_C steven945563

    Posted

    I ended my message too soon, as I'm typing with one hand, stroke hit my right side, and i'm, or "was" right-handed.  I also take 50mg of nortriptyline per day.  You should be prepared for many obsticles over the coming months, especially depression.  The nortriptyline should help with the depression.

    The best, and only way I know to heal, is to wear this terror out. Keep it on a leash and wear it out, and if you find any other way - CONTACT ME ASAP.  Call me anytime you wish to talk.

    God bless you and yours,  Bob Combs

     

    • steven945563
      steven945563 Bob_C

      Posted

      Hi Bob , it's Steven here I totally understand about typing this horrible stroke that affected myself debilitated my hands for typing so I've got this voice activated text to help me. Thought I was alone in this world with this horrible pain after my aneurysm surgery and stroke. Got the message that you are a veteran thank you for your service. I've tried to nortriptyline in the highest dose of gabapentin unfortunately the only thing working right now for me is hydro morphine bad side effect with the nortriptyline gabapentin hydro morphine and colazapan is what they've given me. So hard to cope with this pain it's horrible when people just don't understand I've developed a tremor now that has devastated what little hope I had in trying to walk. Doctor said I was very lucky because of my age being in my early forties he says the strength I have is keeping me going there are days where it is very tough my friend it's trial and error with all these medications. Very tough from being an active person to being bedridden.
  • Bob_C
    Bob_C steven945563

    Posted

    Steven, I know that your friends and family cannot possibly understand your pain, and that it is so hard to comprehend, that you don't even want them to realize,as it is beyond frightning and devestating.  If you need to give them a personal conformation of the trouble is real, and that your not imagining this in any way or manner, you've got my phone#.  God Bless, and Keep up the good fight. 
    • steven945563
      steven945563 Bob_C

      Posted

      Hi Bob thanks for getting back to me, youre so right a lot of people just don't understand this is very frustrating family doesn't understand it friends don't understand it.
    • Bob_C
      Bob_C steven945563

      Posted

      My wife of 43 years, who loves me very much, and knows me all to well, has even accused me of being lazy, lying, etc, all because she can't understand, even though my stroke is well documented, and that's why I offer my verification of the pain that you suffer with. God Bless. Bob Combs

    • steven945563
      steven945563 Bob_C

      Posted

      Hi Bob it's Steven. I got your message and phone number I will give you a call been going through a lot of appointments lately. I can kind of relate to what you're saying my family is telling me the pain is not real. It's horrible. I hope you're doing well. God bless thanks for helping me keep the faith and be brave I will give you a call. Sincerely Steven
    • steven945563
      steven945563

      Posted

      Wow Bob this is Steven it has been a long time I have lost my password and finally retrieved it I'm back on this website. I hope you are doing well it's been a long time I hope you get this message I have been going through the up-and-down roller-coaster ride of pain but I'm hanging in there. Please tell me how you're doing get back if you get this message your friend Steven

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