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    #31
    Originally posted by Zoso View Post
    Yes I started out on Neurontin but have since changed to Lyrica. I've tried Cymbalta and I think one or two others, but none work which is why I've tried analgesics.

    The appointment went bad, very bad. Seems to this neurologist the pain is mostly in my head. He's hispanic and has a heavy accent - somewhere between Ricky Ricardo and Tony Montana - which made it a bit hard to understand him at times.

    He said the pain isn't my problem, then he said it's only part of my problem, then he went on to spout out metaphor after metaphor. "You can give a fat guy all the insulin you want but it's not going to cure his diabetes."

    He then showed me a list of all my meds and told me even if the pump worked he knows that in another 3 years my dosages will be increased. I told him that if the pump worked it would drastically cut my oral meds. He said if I want to trade chairs with him then he couldn't help me.

    After that I told him I was sorry for wasting his time but he insisted I stay and hear him out and he reached deeper into his arsenal of metaphors. When I left they did give me the DVD for the pump but I'll probably be mailing it back.

    CAN SOMEONE JUST TRY THE TEST INJECTION ALREADY!!! It'd be nice to know if all this shit I've went through is worth it.

    Sounds like your doctor is an asshole! Might want to see another doctor. People don't want to hear metaphors, they want help. Sounds like he's helping himself look more important than trying to help you. I would write a letter to him w/your complaints and cc it to your other doctors and the board of directors. There is no reason for that kind of behavior even for a high almight doctor. Dick head!
    Brian


    "God grant us the serenity to accept the things we cannot change, The courage to change the things we can, And the wisdom to know the difference."

    Serenity Prayer

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      #32
      Originally posted by bdvaneven View Post
      Sounds like your doctor is an asshole! Might want to see another doctor. People don't want to hear metaphors, they want help. Sounds like he's helping himself look more important than trying to help you. I would write a letter to him w/your complaints and cc it to your other doctors and the board of directors. There is no reason for that kind of behavior even for a high almight doctor. Dick head!
      He was misguided to say the least. I doubt I contact him in regards to my visit, but my mom did utter a revenge after we left. She works in my stepdad's Dr's office and said "we won't be referring anyone else to him."

      Good idea I supppose, no more patients for him to bullshit and hit him where it hurts - his wallet.

      The only reason I was visiting these other neurologists is because my pain specialist doesn't accept my insurance and he suggested I try to find someone that did. I'm done with that now and will just pay cash for the test injection.
      No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
      Fredric Lieberman

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        #33
        Found my neurologist. Went yesterday and brought my stepdad this time for backup. He asked about everything and LISTENED! He was very optimistic, even a little too optimistic for me but I'll take it.

        I had a physical from him, blood work done and an ECG within 2 hours and I'm going again today for an EEG. He said I was a perfect candidate for the pump and would have it done within 2 weeks.
        No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
        Fredric Lieberman

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          #34
          Thanks for the update. I wish you the best of luck.

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            #35
            Important info!!!!

            I need to post this. I just recieved info from Dr. Richard Penn, the inventor of the pump, that he no longer will use this drug. 3 people within the last year have gone into COMAS!!!!.

            I have done a complete reversal on the opinion of this drug. He is currently working with medtronics to try to get Gabapenten(neurontin) into the pump, but as usual he is having problems with the pharmaceutical industry and Medtronics itself to get this to the market.

            More bueracratic red tape bullshiit. But if anyone can do it Dr. Penn will do his best. He is the most compassionate neurosurgeon I ever met who is fighting to ease suffering. What more can you ask for?
            John Ponziano
            Chicago

            http://www.uchospitals.edu/physicians/richard-penn.html

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              #36
              Thanks for the update.

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                #37
                I imagine it won't be too long before the drug is taken off the market. It's really made my life difficult even to this day and I haven't had it in over two years.
                C-5/6, 7-9-2000
                Scottsdale, AZ

                Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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                  #38
                  Well I'm home now from the hospital. I went in for my EEG Monday and as soon as it was done he had me a room ready at the hospital. That caught us off guard since we live an hour away but the sooner the better. I had the test injection of Baclofen and Morphine.

                  The worst part was the hospital didn't titrate my meds down, I just took the last dosage before the EEG and that was that. When I did get the injection I felt immediate results and honestly don't know if it helped the pain because it knocked me out.

                  When I woke up the spasms were better than without Baclofen(no surprise) but the pain was coming back. I'm having the surgery soon and I'm sure we'll have to tweak the dosage and he even mentioned supermorphine which I assumed to be Dilaudid.

                  So for now here I lay after going through some severe withdrawals and taking about a days worth of meds in 6 hours. I'm better now, just oddly a bit of dull lower back pain. Wish me luck and good luck to you all.
                  No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
                  Fredric Lieberman

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                    #39
                    Cold turkey, huh? That's gotta suck. Hang tough and you'll get through it, but stay alert for any serious problems. Thanks for keeping us up to date.

                    Comment


                      #40
                      Zoso

                      Pain is "not the main problem" ONLY for those who do not have severe pain. Then, it is THE problem. He sounds like a medical version of the Saturday Night Live "Naked Man" skit when this naked guy tries to tell everyone his nakedness is not what is really bothering them, when it is more than obvious that it IS what is bothering them.

                      I so hope this works for you. The Baclofen is likely to work. Let's hope something reaches the pain as well.

                      Your story about the hispanic neurologist. I have a similar story. I finally wore him down. I knew one more metaphor than he did. If you have to talk to him again, just speak of a pain "whose name I do not want to remember", only say it as de cuyo nombre no quiero acordarme This famous phrase is from Don Quixote, the opening line. It is as famous in Spanish as say, Shakespeare's "to be or not to be". If he is a man of letters he will recognize it, and he will smile, If he does not recognize it and thinks you are making a slur, then you are in trouble, so forget the whole thing.
                      Last edited by dejerine; 22 Jan 2009, 6:32 PM.

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                        #41
                        LOL dejerine! I don't know how to quote, sorry, but that cracked me up and it's just what I needed...

                        I HATE pain, I'm SICK of PAIN and I hope everyone finds a solution, I know I need to find one.. and very quickly, I'm running out of umph and patience.


                        take care bbs

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                          #42
                          Thanks dejerine but I won't be seeing him any more. My new neuroloist is great so far. He's done what I wanted and fast. It took him less than 2 weeks to do he test injection and I'm waiting on the surgery to be scheduled.

                          David, I was wondering what pain you must have to mod this forum, if being the only rational republican wasn't enough lol.
                          No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
                          Fredric Lieberman

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                            #43
                            Hey all thought I might add to the mix of success and non. I have been on Prialt now for about 3 months and am currently at 7.5 mcg and 1 mg of Morph. My doctor was unable to get the tip of the catheter right at the site of injury so I beleive its a bit low but she said this was ok. I haven't really experienced any releif, actually it has gotten a bit worse but this is most likely due to a major reduction in oral methadone which is why I went the prialt route( too much cloudy sleepy days). I am a t-10 complete with an almost completely severed cord due to a fall in 05'. I havent experienced any side effect either from the prialt, I have a hard time remembering some short term stuff but this was going on before prialt came into the picture so can;t blame it on that (too many knocks in the head most likely). So I will continue titrating 1mcg every two weeks until something happens, I'm really praying for just a bit of relief so I can x the narcs. My doc keeps telling me that I won't get complete releif but any little bit will do for me. I'll try and keep you posted on how it goes, and all of you that are in pain, know that you aren't alone, keep your heads up. My prayers are with ya.

                            Scott
                            "illegitimi non carborundum"
                            "Merda taurorum animas conturbit"

                            Comment


                              #44
                              Originally posted by Divemed View Post
                              Hey all thought I might add to the mix of success and non. I have been on Prialt now for about 3 months and am currently at 7.5 mcg and 1 mg of Morph. My doctor was unable to get the tip of the catheter right at the site of injury so I beleive its a bit low but she said this was ok. I haven't really experienced any releif, actually it has gotten a bit worse but this is most likely due to a major reduction in oral methadone which is why I went the prialt route( too much cloudy sleepy days). I am a t-10 complete with an almost completely severed cord due to a fall in 05'. I havent experienced any side effect either from the prialt, I have a hard time remembering some short term stuff but this was going on before prialt came into the picture so can;t blame it on that (too many knocks in the head most likely). So I will continue titrating 1mcg every two weeks until something happens, I'm really praying for just a bit of relief so I can x the narcs. My doc keeps telling me that I won't get complete releif but any little bit will do for me. I'll try and keep you posted on how it goes, and all of you that are in pain, know that you aren't alone, keep your heads up. My prayers are with ya.

                              Scott
                              I would love to hear an update on your situation and if you are still on Prialt and how it is working for you!

                              I have been on Prialt for about 8 weeks now. I started at 1.5 mcg and was raised to 1.5 mcg every week. I am suppose to be raised for the last time this coming Monday, but am very scared to have them do it anymore. The side effects have been miserable. I am praying that the side effects will go away and that the pain relief will get better soon!

                              It has been cool for me to read other peoples results and side effects, so that I know it is just not me going crazy! If there is anyone out that there is on Prialt and can tell me there story, I want to hear it, especially if it ended up working out well! In reality I want to hear honest stories just to know if I should keep with the drug.

                              One other key thing I want to know is people's dosage, what they started at, what they are at now and how long it took to get there. I went from 1.5 to about 13 in a 2 month time frame. Was this a bad thing to have the pump increased that quickly?

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