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    Updating and a few questions

    By nick:
    Mom went to the er Monday because the pain was spreading to her chest.
    Her attending doctor wanted to eliminate any heart issues, then look over her scans.
    She rx'd Gabapenting 300mg 3x day. To help the nerve pain,
    and thus take less vicodin. Then referred her to another neurosurgeon.

    The neurosurgeon looked at her ct scans and xray and agreed that it was
    a pinched nerve caused from the scoliosis. He felt nerve block would
    be too invasive and recommended she continue the gabapentin.
    She's hesitating taking it because the second
    time she did, she slept about 11 hrs. She need to keep track of her sugar levels and eat on time but his sleeping thing throws her off. The vicodin [7.5 mg] isn't having the same effect.
    She's up to a whole pill every 4 hrs. Now her appetite has gone down alot.
    Feeling nauseous. She thinks it might be the vicodin.
    Her wound care doctor [also the attending dr at the er monday]
    gave her a referral to a doctor who does rehabilitation to evaluate her
    and see if a brace might help eliminate the curving.

    She wanted to know if anyone had similar reaction to Gabapentin.
    She also wanted to know why the procedure would be too invasive. Does
    anyone know exactly what is done? The area affected is T4.
    She's also concerned that the numbness she is feeling now will
    progress to the point of paralysis in that area.
    Any help is very much appreciated.
    Last edited by Raven; 12 Sep 2009, 5:42 PM.
    Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

    A warrior is not one who always wins,
    but one who keeps on fighting to the end ~ Unknown ~

    #2
    Thank you so much for the update, Nick. I've been wondering how your Mom was doing -- it's a real drag to learn that her pain problems are still dominating her existence Please tell her I'm so sorry and that I'm thinking of her.

    I took Gabapentin for about six weeks and I did sleep longer and more deeply with it in my system. For me, though, this was a very welcome side effect because I'm normally a very troubled sleeper who has difficulty getting to sleep and staying asleep. I was taken off the Gabapentin using a two week taper because it caused severe edema in my extremities -- feet and legs, hands and arms. I was bummed to see it go as it was bringing some relief.

    As far as the nerve block being too invasive, that seems to be a very cautious doc (overly so?) making a call. I'm eager to hear what the nurses and/or Dr. Young say about that.

    Nick, what's happening with the mass that was discovered? Is Raven going to get it biopsied? Are these latest doctors aware it exists, and if so, how does it figure into their treatment plans?

    Finally, I'm worried about Raven's tylenol intake. If she's needing the Vicodin ES (7.5 mgs) every four hours, that means she's taking a potentially toxic 4500 mgs of acetaminophen every day. The FDA's maximum daily dose of Tylenol is 4000 mgs, and a subcommittee recently recommended that it be lowered because too many people were inadvertently ODing on acetaminophen and destroying their liver.

    Given that your Mom already has liver problems, she needs to have one of her doctors change her pain meds from the Vicodin ES to 10 mgs of oxycodone. That would provide comparable relief to what she gets now from the whole Vicodin but with no Tylenol to potentially mess with her liver. Can you help make this happen?

    Thanks so much for the update. Please tell Raven she's missed and that I'm thinking of her, and let us know how she's doing.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar

    Comment


      #3
      Originally posted by thehipcrip View Post
      Thank you so much for the update, Nick. I've been wondering how your Mom was doing -- it's a real drag to learn that her pain problems are still dominating her existence Please tell her I'm so sorry and that I'm thinking of her.

      I took Gabapentin for about six weeks and I did sleep longer and more deeply with it in my system. For me, though, this was a very welcome side effect because I'm normally a very troubled sleeper who has difficulty getting to sleep and staying asleep. I was taken off the Gabapentin using a two week taper because it caused severe edema in my extremities -- feet and legs, hands and arms. I was bummed to see it go as it was bringing some relief.

      As far as the nerve block being too invasive, that seems to be a very cautious doc (overly so?) making a call. I'm eager to hear what the nurses and/or Dr. Young say about that.

      Nick, what's happening with the mass that was discovered? Is Raven going to get it biopsied? Are these latest doctors aware it exists, and if so, how does it figure into their treatment plans?

      Finally, I'm worried about Raven's tylenol intake. If she's needing the Vicodin ES (7.5 mgs) every four hours, that means she's taking a potentially toxic 4500 mgs of acetaminophen every day. The FDA's maximum daily dose of Tylenol is 4000 mgs, and a subcommittee recently recommended that it be lowered because too many people were inadvertently ODing on acetaminophen and destroying their liver.

      Given that your Mom already has liver problems, she needs to have one of her doctors change her pain meds from the Vicodin ES to 10 mgs of oxycodone. That would provide comparable relief to what she gets now from the whole Vicodin but with no Tylenol to potentially mess with her liver. Can you help make this happen?

      Thanks so much for the update. Please tell Raven she's missed and that I'm thinking of her, and let us know how she's doing.
      The doctor decided not to biopsy, but rather monitor it.
      Again, a biopsy being too invasive. I'm assuming it's because of the low platelet?
      After the tech removed her IV on Monday and bandaged it up,
      she started bleeding like a waterfall.

      The acetaminophen is also her concern. Before this neuro pain started she would
      take about 250mg of acetaminophen a day if needed, and that wasn't every day.

      I know from my own personal experience on gabapentin, it did knock me out
      for a few hours the first times.
      I was given 300mg every 12 hrs in the hospital. When I was released I was given
      the same dose as Mom. It did nothing and was increased to 600mg 3x day.
      That didn't work until i started using B-Complex for my deficiency.

      Hopefully Dr. Young or one of the nurses can give some advice.

      Comment


        #4
        Hi Nick ... tell your Mom she's in my prayers .... stay strong ....

        Obie
        ~ Be the change you wish to see in the world ~ Mahatma Gandi


        " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
        Jane Siberry

        Comment


          #5
          No advice, but sending more prayers your way...

          {{{Raven}}}...and Nick too...

          oh...and Isis...

          Teena

          Comment


            #6
            With narcotics- you keep needing more and more that is why people can become dependent on them. Try taking a lower dose of Gabapentin in the day and a higher one at night but the drowsiness usually goes away after a couple of weeks on the medication.

            CWO
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

            Comment


              #7
              Quick question since I am in a lot of pain and can't even sit down for long. Is it possible for the nerve pain to affect the movement in my left side and spread more? I have noticed that the pain is now bothering me on my left forearm and has included my entire left side. The pain has become unbearable and unrelenting so that the vicodin nor the the neuronting seem to help much day or night. Please Wise or SCI Nurse give me some advice or idea.

              BTW, dr said said something about T4 nueral based lesion. Wonder what to expect with this.

              Raven
              Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

              A warrior is not one who always wins,
              but one who keeps on fighting to the end ~ Unknown ~

              Comment


                #8
                You're in our prayers Raven.Hope you get some releif and get better soon!
                Be yourself!!!
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                Comment


                  #9
                  Raven, dear, I tried to give a more genetic answer at /forum/showthread.php?t=124309 but let me be more specific here. Because of your liver problems, I don't recommend tylenol (acetaminophen). I am so sorry to hear that the pain is spreading and neither neurotin nor vicodin is giving much relief. The next step is going to fentanyl and probably the Duragesic patch is the best way to deliver it without all the constipation that comes with taking opioids. It is not as hepatotoxic as other drugs. Wise.
                  Last edited by Wise Young; 19 Sep 2009, 4:17 PM.

                  Comment


                    #10
                    would it be possible to try the tens unit? she is pretty desperate at this point.

                    Comment


                      #11
                      Thinking of you, Raven. I hope you get some relief, and soon. You definitely need something with more kick than the Vicodin, and already know you need to get off that ASAP because of the Tylenol it contains. Can you call your docs off hours tomorrow and ask about getting on the Duragesic patch or will you have to wait until Monday?
                      It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                      ~Julius Caesar

                      Comment


                        #12
                        Originally posted by thehipcrip View Post
                        Thinking of you, Raven. I hope you get some relief, and soon. You definitely need something with more kick than the Vicodin, and already know you need to get off that ASAP because of the Tylenol it contains. Can you call your docs off hours tomorrow and ask about getting on the Duragesic patch or will you have to wait until Monday?
                        Thanks for your reply. Mom thanks you also =]
                        Unfortunately, we are in the process of changing her internist.
                        Her soon to be ex internist is pretty much useless.
                        He goes in, says hello, checks her lungs, asks how she's doing
                        and tends to cut her answers short. The McDonalds of medicine.
                        She really liked her wound care doctor who is also an internist,
                        however she doesn't practice outside the hospital or wound care center
                        anymore.
                        Monday she has an appt. with a potential new dr. She liked
                        his care at the ER so she is going to give him a try.
                        I plan to call more orthopedics and neurosurgeons,
                        maybe even a chiropractor Monday also,
                        to see if they can't do anything sooner.
                        This has been going on for months and no one can seem to
                        do anything about it.
                        I'll keep posting to keep you all updated.
                        Thank you to everyone for your replies. Wish us luck!

                        Comment


                          #13
                          Until tomorrow a hospitalist or intern should be able to try a Lidoderm patch on the area. Helped my burning feet when that acted up again too. Very few possible side effects. Give her my best wishes for being pain free soon too.
                          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                          Comment


                            #14
                            Originally posted by Sue Pendleton View Post
                            Until tomorrow a hospitalist or intern should be able to try a Lidoderm patch on the area. Helped my burning feet when that acted up again too. Very few possible side effects. Give her my best wishes for being pain free soon too.
                            Thanks =]
                            I had forgotten to mention that also. Her er/wound dr did rx the Lidoderm patches. They
                            do seem to help take some of the edge off at times. Luckily she rx'd three boxes.
                            Thank you again for all your help =D

                            Comment

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