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Thread: ready to give up from the pain.

  1. #71
    Senior Member
    Join Date
    Nov 2005
    I feel bad for you Tim I hope things improve for you my friend you'll be in my prayers ; LBUSH

  2. #72
    Senior Member
    Join Date
    Jun 2006
    East Coast
    Have they talked about a spinal pump for you?
    I have seen it suggested, but I did not see any follow up.

    Also, a man just off the breathing machine read your printed post.
    He said that against doctors orders, he would have his PCA take a plastic bag with ice in it and wrap his neck in it for 30 minutes when it got really bad. He said he does not know why, but it would cut the pain more than in half for several hours.

    He also mentioned that if he did it when it started, instead of waiting for it to get bad, it seemed to work better.

    I take provigil,, which allows me to use more opiate, yet be awake. I get more relief this way.

    I hope you get some reduction in your pain!!

  3. #73
    Junior Member
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    Jul 2006
    the land downunder
    Haven't heard from you in a couple of day How are things going?
    Hope that the pain has subsided and giving you some releif.
    Cheers mate

  4. #74
    Senior Member Tim C.'s Avatar
    Join Date
    Oct 2002
    New Jersey
    Blog Entries

    Thumbs up HAH, I had less pain today so i changed my avatar, DR HUANG and MYSELF in T'SQUARE

    I'M the one in the wheelchair.
    Following my OEG xplant in '03.
    maybe i got 'abby-normal' cells from the house of pain?

  5. #75
    Senior Member Tim C.'s Avatar
    Join Date
    Oct 2002
    New Jersey
    Blog Entries

    SEARCH FOR CURE? yea right, consumed with search for pain relief.

    Search for cause and/or relief from my pain continued this week.
    As best as I can source the pain from somewhere within my body, the effort is of course hampered by the presence of paralysis.
    The source of my mysterious abdominal pain, as i understand, can be traceable to either: (?)

    seems simple, yet it's been elusive.
    thus far this week, i was examined by two urologists at North Shore/ LIJ of New Hyde Park.
    > These md's are no fans of any hardware maintained in a bladder. Leads to chronic infections, even with my size 22 SP tube. my SP tube area is always too sensitive.
    These md's recommend cic, texas, or conduit, depending on dexterity. In my case, they suggested an incontinent conduit.???
    I was informed that the 'conduit' procedure involves redirecting the ureters and creating a stoma, to be dressed with a collection bag.

    > Abdominal/ pelvic CAT scan completed on tuesday. await GI appointment to eval results and physical exam.

    any comments welcome,
    dying from abdominal pain!
    when can i enjoy less pain? UGH!

  6. #76
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    Tim, I'm sorry about the pain. You look great in that avatar with Dr Huang! It seems like yesterday when you guys all went for that surgery. You never saw one improvement?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #77
    Hi tim,i have been following your thread thru out your ordeal here,but haven't posted as you were getting sooo much support here that i couldn't really add anything but to say i really really DO feel for what you are going thru.honestly,living the way we have to just sucks and really is just soo unfair.i just had a thought tho as to one possibility for your pain issue(well,the biggest one you are currently dealing with anyway)have any of your docs ever mentioned the possibility of a condition called interstitial cystitis?

    this is a really horrid condition with very high levels of aunt has really truley just plain suffered thru hell with this.basically,the inner lining of the bladder,for some unknown reason,just slowly deteriorates away and leaves behind a very very pissed off and inflammed lining inside of the bladder.i don't know the whole ins and outs of this condition but it has alot of other symptoms that go haand in hand with it like bladder spasms when she over does things a bit too much?.this actually forced my aunt to have to quit a very very wonderful job and go onto disability,thats how badly this condition can effect people.i was just wondering if anyone ever actually mentioned this to you as a possible cause for your ongoing pain?

    you could try googling it and see how your symptoms match up with it.just a thought.i really do hope someone can Dx this crap for you and it can be appropritely treated and give you some of your life back DO appear to be doing a bit better just reading thru your first post up to now,is that the case?i know we all have those dark times where we wonder what in the hell we are still doing here when there are other options that would leave us pain free,but just not here anymore.

    I cannot say why we are forced to have to live this way,i wish someone would tell me just what in the hell i did or my son did to deserve so much pain and heartache and to have to endure some of the most hidious godawful Dx from hell.but i do know that i see big changes in me,in my appreciation for those around me and who love me.i personally have become a much better person because of all of what i have had to deal with.i also have much much more compassion for those who suffer worse than i do.and in some cases,i feel actually lucky that things are not as bad for me as they were for my friend who at the age of 45 just passed away from the made me realize that no matter how bad anyone thinks there lot in life is,no matter how much pain we suffer with,there really are people out there who DO actually have it much worse than we do.there is ALWAYS something to be truely thankful for.i know some days when you are pouring sweat off your face while just making a tiny movement and the pain is ripping thru your body,it may not really seem that way,but honestly,things can ALWAYS be or become much is definitely unfair,no doubt about that at all.we don't deserve to live like this,espescially when there are sooo many really nasty mean people out there who DO really deserve to have what we have to live with every day of their sorry lives.thats a big question i have for god when we finally meet one day.i know we are all going to heaven since we have already done our time in hell.

    i sincerely hope that things start turning around here soon for you Tim,really i one should have to suffer this kind of everyday torture. and just trying to find the latest Dx of our once again,brand new pain,really does get wayy old,really quick.hopefully between all of your docs,someone will finally find the cause of this new crap you have been suffering with so they can treat it,soon.just know that you are NOT alone in this,K? we are always here to 'talk' to or vent to and we DO know what you are going thru,like no one else can ever one can ever possibly truely know the extent of this crap unless they actually feel it all for themselves.but there IS strength in numbers,and we are those numbers.whenever you feel a bit too overwhelmed by everything,we ARE here to build you back up,to help you sort things out and make you feel that you ARE loved and cared about.we DO know your brand of suffering,but most of all,we do understand why you are feeling the way you are,and thats a really huge thing.i always feel very "at home' here,just for that reason do have friends here who are here for you for whatever we can do for you,K?and Tim?you ARE much much stronger than you think you are,really.hang in there hon.hopefully you will find out something positive very soon.sending a great big (but very gentle)hug your way,marcia

  8. #78

    I was wondering if you have an anal sphincter sore. Even internal roids hurt like TNT when they stick out. I had a problem down there and it took awhile to work things out. Colostomies are sometimes needed is one thing I learned. Also, I found a few doctors never admitting I had a sore there. Even a scrape is very painful. I found out sometimes you need to see it for yourself. You would be amazed at the communication a doctor can fail to give. The bowels giving you pain seems like it would maybe be the anal area. I hope it's just an anal issue anyways because maybe this can be fixed. When you sit up, does your pain increase?

  9. #79
    Senior Member
    Join Date
    May 2006
    Somewhere in the Rocky Mountains
    Hi Tim

    I cant imagine your pain but I hope you get to feeling better. You are a cute fella...its always nice to put a face with a name....Dont give up!!!!
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  10. #80
    i hope they find a cause for the pain that can be corrected..
    cauda equina

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