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  • oh! what to do!! Need YOUR advice for pain & arachnoiditis!

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    Old 10-24-2012, 02:08 PM   #1
    gmak
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    Arrow oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Went to new PM dr today,2nd visit. For 12 years was on fentanyl patch & 120 ms er & 90- 120 mg msir. Old dr left. Have adhesive arachnoiditis"quite severe", so im told by 3 neurosurgeons. Last visit gave me fentanyl patch @ same dosage & 90mg of morphine total in 24 hours. This time," oh we are @ the max, you have to reduce amount. SCS pushed or go off all narcotics for 6 weeks& then get morphine pump." Btw: "no need for neurosurgeon to put in. My partner dr pm/ anesthesiologist can put it in! Give you same med for 2 weeks then come back & you can decide which one."What? I have AA & 3 neurosurgeons wouldnt touch me due to AA. Have had 4 l lam's & dura leaked all 4 times.
    What am i going to do? Scheduled for epi steroids on 11/14 & they are not safe with Aa .this is the 5th dr i have gone to since mine left. 3 neurosurgeons, 1 pm/ anes that lied to me 3 times in15 mins, then this dr?please tell me that if i gave up soma 4 a day, 120mg of morphine extended release & 90- 120mg of morphine for breakthru daily already. That a 100mcg fentanyl patch( been on same dose 12 yrs) & 90 mg of morphine daily now, How can that be the maximum? & if one more 30 mg msir a day would makevme normal for me , thenbwhy all the talk of surgeries into my dura that could cut spinal nerves that go to my entire lower body? Help. Advice please. Be truthful please. Thank you for trying to help me.Am I deluded or is it worth the risk?

    Last edited by gmak; 10-24-2012 at 02:47 PM. Reason: never mind, post wont go up or down to edit, sorry

     
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    Old 10-24-2012, 02:54 PM   #2
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    Re: oh! what to do!! Need YOUR advice, pain &arach!

    From what I have heard and read, a lot of doctors do not understand adhesive arachnoiditis...and I think this PM may fall into that category. He seemed to acknowledge you had it, but then promptly forgot. If you aren't to have any more surgeries, he wasn't listening. And who would you rather believe? Three neurosurgeons or an anesthesiologist who probably attended the manufacturer's seminar on installing their particular model of pain pump...in other words, he does not have the training or experience of the neurosurgeon.

    You might think about sending your records to one of the medical clinics that will review records, like the Cleveland Clinic or mosey on over to Dallas and go to some new doctors over there.

    I don't know much about pain pumps. Aside from the need to have more surgery, I don't know if it would help or not. I would stay away from SCS.

    Last edited by teteri66; 10-24-2012 at 02:57 PM.

     
    Old 10-25-2012, 05:40 PM   #3
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Quote:
    Originally Posted by gmak View Post
    Went to new PM dr today,2nd visit. For 12 years was on fentanyl patch & 120 ms er & 90- 120 mg msir. Old dr left. Have adhesive arachnoiditis"quite severe", so im told by 3 neurosurgeons. Last visit gave me fentanyl patch @ same dosage & 90mg of morphine total in 24 hours. This time," oh we are @ the max, you have to reduce amount. SCS pushed or go off all narcotics for 6 weeks& then get morphine pump." Btw: "no need for neurosurgeon to put in. My partner dr pm/ anesthesiologist can put it in! Give you same med for 2 weeks then come back & you can decide which one."What? I have AA & 3 neurosurgeons wouldnt touch me due to AA. Have had 4 l lam's & dura leaked all 4 times.
    What am i going to do? Scheduled for epi steroids on 11/14 & they are not safe with Aa .this is the 5th dr i have gone to since mine left. 3 neurosurgeons, 1 pm/ anes that lied to me 3 times in15 mins, then this dr?please tell me that if i gave up soma 4 a day, 120mg of morphine extended release & 90- 120mg of morphine for breakthru daily already. That a 100mcg fentanyl patch( been on same dose 12 yrs) & 90 mg of morphine daily now, How can that be the maximum? & if one more 30 mg msir a day would makevme normal for me , thenbwhy all the talk of surgeries into my dura that could cut spinal nerves that go to my entire lower body? Help. Advice please. Be truthful please. Thank you for trying to help me.Am I deluded or is it worth the risk?

     
    Old 10-25-2012, 05:59 PM   #4
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    I go to a pm dr. In Lake Jackson that I love. He also has an office in the Woodland, somewhere else in the Houston area. His name is Dr. Kang and he really listens, and has done a lot foe mr SI joint pain, neck pain and lower back pain. I don't know if he could help you, but it wouldn't hurt to call him.

     
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    Old 10-26-2012, 01:52 AM   #5
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Thank youmlwelch! My dr also has office in the woodlands, dr synek. Are they in same place? Will frwd name of office on this post after this. Have to google to get name. Thank you so much! P.s. to teteri got i hope good news today. My old dr contacted me today & wants to see me next week!!! Oh that God would be so good as to let me be so blessed as to have my dr that treated me for 12 years would take me back after he stopped seeing all his pain patients would be the biggest blessed place I could ever imagine being in . Pray for me that i can go back to being cared for, out of this urine test, know you by your history, your face, not a see you like a number, and would not recommend all these procedures that are contraindicated with adhesive arachnoiditis. Oh, pray it is so! Thanks, gmak

     
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    Old 10-26-2012, 01:59 AM   #6
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    to lamar, i didnt get your post. Only the quote that i had said earlier. Would be intetesyed in what you had wanted you had wanted to sayz, please try again!

     
    Old 10-26-2012, 01:13 PM   #7
    gmak
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    Re: oh! what to do!! Need YOUR advice, pain &arach!

    Hi teteri! If you remember my story i had to change drs aftet 12 yrs b/c my Pm&R dr decided not to handle pain pts anymore &do rehab only. Called his office & told him that they were pushing surgery& thst he told me never to have surgery again due to severe AA. He called & wants to see me tuesday! Will you hope & believe for me that he will take me back as chronic AA pain pt? Know that you understand what it is to have AA & what is would mean to me! You have helped me so much along this terrible way since i lost my dr! Thank you so much. Remember my post under "Share my storypain mgmt, title: i was so blessed & didnt know it dated 10/13/12, i think. Well, if we pray then i will just say i am blessed again beyond belief! Will let you know what happens! I care about your pain so much,but we have talked many times that all i can have is all the modalities of pain mgmt, but NO SCS or pump or surgery of any kind according to all the experts! Thank you, gmak

    Last edited by gmak; 10-26-2012 at 01:18 PM. Reason: mistyping

     
    Old 10-26-2012, 01:24 PM   #8
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    My cousin had adhesive arachnoiditis from a botched epidural steroid injection. She finally got relief from an implantable electrical device that sends impulses along the nerves to block the pain sensations, similar to a TENS but actually implanted in her. It allowed her to go off all narcotics and live a normal life again! We are in Denver area. I could find out where/who did that for her if interested.

     
    Old 10-26-2012, 05:16 PM   #9
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Your so sweet to offer to do that! Was it Dr. Falci @Craig university hospital? The SCS is spinal cord stimulator whichbsounds like what she has! There is a neurosurgeon in tx med center i saw in june that I'm going to see again i hope .He talked more of the morphine pump then. But,another one wanted to do the Scs. I would love to hear about your cousin!!! Ive read that its best not to disturb AA, so many others would love to hear a successful intervention on an adhesive arachnoidtis! Thank you ladybud!

    Last edited by gmak; 10-26-2012 at 05:27 PM. Reason: mistyping

     
    Old 10-26-2012, 09:20 PM   #10
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    I'll keep my fingers crossed that your old doctor will take you back. At least you can get his professional advice on whether you could have something implanted, or if not, what should you do.

    Let us know what happens!

     
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    Old 10-26-2012, 11:50 PM   #11
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Thank you teteri! The meds still work [email protected] the same dosage for 12years with the fentanyl patch 100mcg per 3days & with the morphine dropped from 120mg ext release over 24hours & the msir for breakthrough @ 15mg total 6/a day. Now dropped to patch 100mcg per 3days & the morphine ir 30mg 3/a day & no long acting [email protected] & no soma.just lyrica150 2/ a day, baclofen 10mg t i d. When i see him im going to say how much i have dropped the morphine & see if he thinks i truly am in danger. If no, then i will know these pm/ anes are just gouging my insurance with 2500 dollar urine screens they sent out- of- network& the epi steroid injs, pressure to get new TENS, they ordered me without my permission when i told them i have 4 units & 2 have never been out of box! Then, SCS & rehab for 6 weeks to take me off all narcotics, then morphine pump! He told me for 12 years " no more surgeries" & no more injs! So by Gods grace, & yalls prayers I may function again! I cant imagine him wanting to see me to tell me "No"! I pray not. You have been so great to me, truly. I will let you know! Thank you for caring about me.I think you are the greatest on the board for helping people, before i even signed on! Truthfully! Thank you again, gmak

    Last edited by gmak; 10-27-2012 at 12:04 AM. Reason: mistyping

     
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    Old 10-31-2012, 07:31 PM   #12
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Quote:
    Originally Posted by ladybud View Post
    My cousin had adhesive arachnoiditis from a botched epidural steroid injection. She finally got relief from an implantable electrical device that sends impulses along the nerves to block the pain sensations, similar to a TENS but actually implanted in her. It allowed her to go off all narcotics and live a normal life again! We are in Denver area. I could find out where/who did that for her if interested.
    Ladybud, can you personal message me. i would like to find out more information about your cousin with arachnoiditis. I think that I have it and would like to ask you some more questions. PLease personal message me. thanks

     
    Old 11-02-2012, 02:10 PM   #13
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    Re: oh! what to do!! Need YOUR advice for pain & arachnoiditis!

    Quote:
    Originally Posted by gmak View Post
    Thank you teteri! The meds still work [email protected] the same dosage for 12years with the fentanyl patch 100mcg per 3days & with the morphine dropped from 120mg ext release over 24hours & the msir for breakthrough @ 15mg total 6/a day. Now dropped to patch 100mcg per 3days & the morphine ir 30mg 3/a day & no long acting [email protected] & no soma.just lyrica150 2/ a day, baclofen 10mg t i d. When i see him im going to say how much i have dropped the morphine & see if he thinks i truly am in danger. If no, then i will know these pm/ anes are just gouging my insurance with 2500 dollar urine screens they sent out- of- network& the epi steroid injs, pressure to get new TENS, they ordered me without my permission when i told them i have 4 units & 2 have never been out of box! Then, SCS & rehab for 6 weeks to take me off all narcotics, then morphine pump! He told me for 12 years " no more surgeries" & no more injs! So by Gods grace, & yalls prayers I may function again! I cant imagine him wanting to see me to tell me "No"! I pray not. You have been so great to me, truly. I will let you know! Thank you for caring about me.I think you are the greatest on the board for helping people, before i even signed on! Truthfully! Thank you again,gmak






    Hi teteri,
    I went to see old dr. He put me back on time released morphine 90mg/24h, no morphine short acting. Still on fentanyl patch. He stopped seeing all pain patients, but still wants to see me, due to extreme pain, danger of injs & surgeries with AA. Both of those they cut dura, @ site spinal nerves, above where spinal cord is tethered to dura(clumped intra dural, in dura itself & epidurally. Feel better already. Do have some qualms about what if he does this again? What do I tell other PM dr? You are great with advice & with words, ideas etc. What do i say? Send letter? Dont want to offend, what if I need him again @ some point? But, I can see neurosurgeon that told me get morphine pump & live out your life. Have you ever heard of someone having to go off all opiods for 6 weeks before morphine pump done? Thats what the PM said. Thank you for everything! Waiting to hear what you say! Thank you teteri! You know( I hope)how much I appreciate you! Thanks,gmak

     
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