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  • Pain Pump Failed

    Hello,

    Have taken a break from the ICN for awhile now, but just wanted to update. I had the pain pump trial at UCLA on 1/2/2017 and it did work...too much. My bladder was numb, but I went into almost complete retention so I would have had to cath myself daily with it. Also, I was allergic to the morphine he gave me, so I had severe itching all over my body. They switched to dilauded and I was still itching. They couldn't guarantee the itching would go away once the pump was implanted so that scared me. Also, cathing daily can cause infections as we know.

    Also, there were some complications. My spinal tissue was so tough they had to puncture it twice, which you are awake for which can be scary experiencing. The punctures resulted in a severe spinal headache, to the point I couldn't walk and had to get an emergency blood patch via epidural two days after. I could not fly back home, but my brother had to fly to LA to help my mom and I drive through the storm together.

    Am I glad I did it? YES. I think it is worth a try. But there were too many complications and risks for me to move forward with this procedure.

    So I am back to square one with Stanford. My next step in hydrodistension, then botox, then I think one more things before either an ostomy or cystectomy. My symptoms are still awful, daily bladder pain & frequency. I will be soo relieved the day this thing is out of me.

    Take care,

    -M
    Health Issues
    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
    Symptoms:
    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

    Failed
    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

  • #2
    Re: Pain Pump Failed

    I'm sorry the pain pump trial was not a good experience for you. I've had my pain pump since December 2012 and I'm not sure how I could function without it --- however, mine is for nerve damage from spinal surgery to remove cancer tissue. They started me on a very low dose of morphine and gradually increased it until my pain levels were lowered significantly.

    If you've never tried hydrodistention, I suggest giving it a try.

    I hope you find some relief soon; you've had a long, difficult journey.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Re: Pain Pump Failed

      I'm sorry to hear the pain pump didn't work for you. I also have problems with a "numb" bladder when I take narcotics. I have to really work at going - and it's very slow. And I'm not sure I'm getting it all out. For that reason, I try to avoid them as much as possible, but when you're in a lot of pain, they are a necessary evil!

      I had a successful hydrodistention when I was first diagnosed. I call it successful because I did start to feel much better about 3-4 weeks after having it. I was in a long remission after that. I hope whatever you choose, you can finally find something to help you.
      Jane
      Diagnosed 1/7/14 via cysto/hydro

      Current Treatment:
      10 mg amitriptyline, DH Aloe Vera

      Used During Flares:
      Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

      Practicing bladder training and stress control (hot baths, pelvic stretching)
      Recently tried PT, do not appear to have PFD

      Things that have not helped in the past:
      Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

      Also have migraines and IBS

      Comment


      • #4
        Re: Pain Pump Failed

        I had a hydrodistention schduled for this past Tuesday at Stanford, but I just got notified they no longer have contract with individual Blue Shield of Blue Cross insurance. So it would be out of network which is $$. So basically everything has come to a screeching halt there cuz of health insurance. I am so enraged by this, why do I pay $400 a month for health insurance I CANNOT USE?!!

        My work does not offer group healthcare, and its not open enrollment yet, and medi cal is awful. So basically my health and life have been put on hold because of our HORRIBLE health insurance system in America!!!

        So yes, I had a hydro planned and was actually moving forward..but then yet again, health insurance companies and their greed got in the way, AGAIN.

        I HATE AMERICAN HEALTHCARE.
        Health Issues
        IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
        Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
        Symptoms:
        I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

        Failed
        Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

        WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
        Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

        Comment


        • #5
          Re: Pain Pump Failed

          Originally posted by MissM View Post
          I had a hydrodistention schduled for this past Tuesday at Stanford, but I just got notified they no longer have contract with individual Blue Shield of Blue Cross insurance. So it would be out of network which is $$. So basically everything has come to a screeching halt there cuz of health insurance. I am so enraged by this, why do I pay $400 a month for health insurance I CANNOT USE?!!

          My work does not offer group healthcare, and its not open enrollment yet, and medi cal is awful. So basically my health and life have been put on hold because of our HORRIBLE health insurance system in America!!!

          So yes, I had a hydro planned and was actually moving forward..but then yet again, health insurance companies and their greed got in the way, AGAIN.

          I HATE AMERICAN HEALTHCARE.
          I'm so sorry this is happening to you. The best suggestion I can think of is to contact a uro who is covered by your insurance, then ask the Stanford doctors to send your records. However, you might want to find out exactly how much money is involved with the "out of network" --- if you're happy with your doctor, you might want to go ahead with it. Or, if possible, find a different insurance?

          Warm hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            Re: Pain Pump Failed

            Some hospitals will give a significant discount if you pay cash (but still,that's probably tons of $) I agree,our health system here is deplorable.hugs,shorty

            Comment


            • #7
              Re: Pain Pump Failed

              I see you still did not try Uracyst instills, that help to build up bladder lining again (yes, you tried hundred other instills, I saw it.) My bladder was 3 years ago inflamed bloody, red, I saw it on in-office cysto myself. I did Gepan and Uropol (Uracyst) instills all the 3 years, and half a year ago new cysto showed my bladder as new, white and no bloody vessels anywhere. I still consider that this is better than bladder removal, even though you need to order it as medical device from Canada and it takes some time before it works. I have also heard miracle stories in German forum, how already badly shrunk bladder actually turned better and bigger after some time of Uropol instills.
              I guess Botox next to it is also great idea, in Germany mostly they are used parallel.

              Comment


              • #8
                Re: Pain Pump Failed

                Oh man. I have been wondering about you. I am so sorry to hear that this didn't work. I was so hopeful that this was going to make a significant difference for you. So many complications though. You're so tough for hanging in there and going forward to try everything. Something's Gotta work.

                Comment


                • #9
                  Re: Pain Pump Failed

                  MissM...I am SO sorry to hear your pain pump trial failed. Ugh!!!! You were SO brave to try it. Thank you for posting the details of how it went. I've had IC a very long time & it greatly helps to hear other's experiences with treatments...the good, bad AND the ugly.

                  I agree healthcare coverage in America is a disgrace. My doctor cannot stand insurance companies & he tells me often lol. Especially when they try to mandate how he will treat his patients by denying treatments for people who are truly suffering. I've found...most doctors will greatly reduce prices if I choose to go "off the grid" & do treatment without using insurance. I get so frustrated when insurance companies go all Nazi about this stuff. The doctors set up payment plans too. True, some treatments have been a big "no" because it just cost too much...but some have been do-able. I'm sick of insurance ruling my healthcare & try to work around it this way whenever possible.

                  How are you feeling this week pain-wise? Do they at least give you oral pain meds that help you for now?

                  I am so empathetic to what you're going through with all this. Just know you're not alone.
                  Jeannie
                  "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                  IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                  Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                  Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                  Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                  As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                  Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                  Comment


                  • #10
                    Re: Pain Pump Failed

                    Krist656...I'm confused about the need to order "medical device" from Canada...is this a requirement to do Uracyst instills?

                    If so what type of cost-range was it? Can a doctor's office help order from Canada or were you on your own with that?
                    Jeannie
                    "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                    IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                    Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                    Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                    Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                    As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                    Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                    Comment


                    • #11
                      Re: Pain Pump Failed

                      Originally posted by jeanniebug View Post
                      Krist656...I'm confused about the need to order "medical device" from Canada...is this a requirement to do Uracyst instills?

                      If so what type of cost-range was it? Can a doctor's office help order from Canada or were you on your own with that?
                      Uracyst doesn't work for everyone --- I'm always happy to hear that any particular treatment is working. To find out details about ordering meds from Canada, you can contact a specific pharmacy there and ask for their procedure. Several years ago I ordered some from there and what I had to do was to obtain a written prescription from our doctor and send that to them. We had to put it on a credit card and they mailed the meds to us.

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                      Patient Help: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

                      Comment


                      • #12
                        Re: Pain Pump Failed

                        Donna...ok, this is good info to know. Thanks for explaining.
                        Jeannie
                        "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                        IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                        Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                        Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                        Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                        As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                        Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                        Comment


                        • #13
                          Re: Pain Pump Failed

                          Hi Jeannie,

                          I have 7 months till open enrollment so I'm not sure what to do, try and find a new job for the benefits or stay put and just wait it out, but it's another 7 months wasted in my life. But then if I get a new job and I begin the testing process again that's not good either. Ughhh it's a nightmare.

                          But my pain level is still awful and my frequency is awful, but I push myself to go out more, even exercise a bit and been trying to date again..it's very tough though. Everyday I want to give up but I only have a few more things left before removal/diversion. I'm currently researching about those options, it gives me hope.

                          But how are you doing? I think last time we spoke you stopped working again, are you trying anything new regarding IC?

                          -M
                          Health Issues
                          IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                          Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                          Symptoms:
                          I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                          Failed
                          Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                          WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                          Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                          Comment


                          • #14
                            Re: Pain Pump Failed

                            Hey M,

                            I'm in a similar boat, only yes I did have to quit working August 2016. Just getting myself into a situation with a roof over my head (after selling my home last December due to Disability) has been a long road. I would rather be healthy and work 3 hideous stressful jobs than deal with all this crap any day.

                            My corporate insurance ends in Aug, and I think I'm going to have to search for Obamacare on the Marketplace after that. So I feel your pain on the insurance dilemma. It's scary!

                            I'm still on long-term antibiotic therapy because it's the only thing that gives me random days of relief right now. And still on long-term low-dose steroids to keep inflammation down, but have started to slowly wean down.

                            I recently watched the ICN founder Jill O.'s video on this site about the newest stages of IC treatment. I saw a couple things I'd either never heard of, or tried. One is the ankle Interstim which is supposed to be less invasive (and less risky) then the low-back Interstim. I wanted to try Cyclosporine but my doctors said "no way for now"...only because I've already been on steroids 2 years, which already lowers my immune system. Cyclosporine is a very strong treatment that can have severe side effects so I can't do both at the same time.

                            Specialists from Chicago to Nashville to Asheville have been clear removing my bladder might greatly lower my current quality of life and will probably not resolve my pain. It's bad enough. I couldn't handle that so it stays put for now.

                            I'm trying to come up with the money to go see Dr Evans in Winston Salem. Between IC, meds, doctors, insurance, traveling, Disability red tape and treatment options it's alot for one person to navigate alone. Plus, when you feel like crap most of the time. I'm soooo tired.

                            It's great you've been trying to date! Ah, fun!! I finally put that on the back burner this past 2 years, but I did have a long-term boyfriend, and also dated during my IC journey when things were a little better. It's so much nicer having a sweet man around to share life! I hope you're able to have some fun here and there. I'm so hoping you find a treatment that helps you, ASAP.

                            If I went on a dinner date right now all I'd want to order is some celery, water, and a Demerol on a golden platter!!!!! I'm terrified of food & my belly is always swollen from pain lately. NOT sexy!! LOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!
                            Last edited by jeanniebug; 03-28-2017, 03:26 PM.
                            Jeannie
                            "She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown

                            IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies

                            Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed

                            Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.

                            Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
                            As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.

                            Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!

                            Comment


                            • #15
                              Re: Pain Pump Failed

                              Hi Jeannie,

                              I don't understand your doctors, why would your quality of life be worse without your bladder? i talk to so many women on the ostomy forum on FB and they are loving life right now. I mean yeah, your body will change, but they can leave the house, travel, eat food, have sex, drink champagne etc... sounds ok to me. What are your doctors reasoning?

                              And I think its a good move to see Dr. Evans, I am part of his patient fan group on FB and people adore the man, he is a great doctor and surgeon I hear.

                              And the insurance IS a total freakin nightmare in this country. Why do we have to go bankrupt to get medical help? I have a plan now, so I need to research more but hopefully Ill be back at Stanford soon. Its just never ending...

                              And BTW i tried the ankle stim thing..its only for frequency..not pain but its worth a try.

                              Talk soon
                              Health Issues
                              IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                              Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                              Symptoms:
                              I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                              Failed
                              Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                              WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                              Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                              Comment

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