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  • Dr Raymond Rackley~ Cleveland Clinic

    Has anyone seen him and know how he usually likes to treat IC? My uro doesn't know what else to do for me and said because I am a tough case he would like me to go see him. I was just wondering since the Cleveland Clinic is so reputable I'm sure there are people on this board who have seen him or heard of him. Every Dr seems to have a regimen of some sort. Just wondering what he likes to do for IC.
    Facebook- Ann Stockmeyer Rachinger

  • #2
    Hi Annie ,

    I'm thinking that while you wait to see Cleveland, there may be some other Doctors to see that may be closer to you...

    That's really tough when you can't find a Doctor that is interested in treating tough cases. I noticed that you are very near me. I used to see a great Doctor in Buffalo. Unfortunately he has moved. Have you tried to see anyone in Rochester, NY? There are some IC Specialists there. Some Doctors specialize in IC and the tough cases but don't let people know about it. It's a matter of sifting through them all. You may want to try to call some other Urologists around your surrounding areas. You can ask a secretary or nurse if the Doctor treats IC.

    From the ICN Physician Listings http://www.ic-network.com/md/doctorlistings.html:


    ROCHESTER, NY


    Edward Messing, MD University of Rochester, Rochester, NY (716)275-0133
    Special Interests: This is an NIDDK/ICCRN funded research center currently participating in the Amitryptiline studies. For additional information in the study, please contact Elizabeth Smith, B.S. - Research Coordinator (585) 275-0989 or Kay Rust, R.N., M.S.N., F.N.P - Research Coordinator - (585) 275-013

    Robert Mayer, MD, Strong Memorial Hospital, 601 Elmwood Avenue, Rochester NY 14642 (585)275-2486 Website: http://www.stronghealth.com
    Special Interests: This is an NIDDK/ICCRN funded research center currently participating in the Amitryptiline studies. For additional information in the study, please contact Elizabeth Smith, B.S. - Research Coordinator (585) 275-0989 or Kay Rust, R.N., M.S.N., F.N.P - Research Coordinator - (585) 275-013

    Kathryn Vullo, PhD, 4 Chelmsford Road, Rochester, NY 14618 (585)889-7627 Interests: I am a pain pscyhologist with experience working with a vairety of chronic pain syndromes. Formerly the Director of Psychology at a CT pain clinic, I continue to work with patients on managing their pain, reducing depression, anxiety and learning relaxation procedures.

    NYC
    Allan Klapper, MD, Director, The Continence & Pelvic Health Center, 10 Union Square East #2E, New York, NY 10003, Phone: (212) 844-8521

    NYC-Central Park
    Charles & Mary-Joan Gerson, MD, Mind Body Digestive Center, 80 Central Park West, Suite B, New York, NY 10023, Phone: (212) 712-0494
    The Mind Body Digestive Center is led by a husband and wife team made up of a Gasteroenterologist and a psychologist. It has the most comprehensive Irritable Bowel Syndrome treatment program in the New York area. For more information visit www.mindbodydigestive.com. If you have any questions, please contact Dr. Gerson at [email protected], or call (212) 712-0494.

    David Kaufman, MD, Central Park Urology, 210 Central Park South, New York, NY 10019, Phone: (212)969-9540 This physician has been involved in the IC community for more than a decade, has spoken at variousevents and also sponsors a well known IC support group. He also has a strong interest in pelvic floor assessment and rehabilitation. Review his ICN Meet the Expert Chat Transcript

    NEW HYDE PARK - Long Island

    Robert Moldwin , MD
    Director, Interstitial Cystitis Center
    Long Island Jewish Medical Center
    270-05 76th Ave., Oncology Building, 4th floor
    New Hyde Park, NY
    Phone: (718)470-7220
    Website: LIJ Medical Center

    RIVERHEAD
    Scott Press, MD, Pastore, Musto, Mills, Grinberg, MD, PC, 1333 Roanoke Avenue, Riverhead, NY 11901 Phone: (631) 727-8340

    WEST NYACK
    Pat Meade-D'Alisera, MD, Continence Care Center, 2244 Palisades Center Drive, West Nyack, New York 10994 - Phone: (845) 358-7828, Fax: (845) 358-4484
    Interests: Pelvic floor therapy including biofeedback, electrical stimulation, individual home therapy programs."



    I hope you get some help from one of them. Maybe someone else can answer your question about their experiences with Cleveland.

    Well Wishes,

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

    Comment


    • #3
      Re: Cleveland Clinic

      Hi,

      I see you have not been on here since 2007. I see Dr. Rackley and while his bedside manner is a bit lacking, he is wonderful for IC. I take Elmiron instills currently and I did Cytotec. His nurse is Maria and his office secretary is Sally. Her email is [email protected]. Maria is the NP. Their website is http://www.ccf.org.

      -April
      Last edited by ICNDonna; 07-16-2009, 05:09 AM.
      Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

      Comment


      • #4
        A bit lacking of personality. He actually smiled at me, sorry.
        Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

        Comment


        • #5
          Doctors

          Annie,

          Doctors are so strange sometimes..........I have one Doctor that likes to talk on the phone but isn't very good in person. I've had Doctors that have not had good phone manners but had great bedside manner and then there are always those in between that make no sense at all no matter how long you have seen them for.

          The best thing to do is to go with a list of symptoms you have, a voiding diary (or pee diary), what you are eating and drinking, questions, concerns and plan B if they don't think it's IC and where they plan on referring you to. I never let my Doctors get away with dropping me without another doctor to go on to, even if it means they have to make a few phone calls. Hey that is what they get paid to do right? They have way more access to the medical community than we do.

          I hope you've found someone to go to and that you get some help and relief soon!

          Kara
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:
          http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

          Comment


          • #6
            Dr. Rackley's Formula

            Hi,

            I was looking over my posts on this thread and I forgot to put his whole therapy. It is usually three times a day:

            1. 650mg Sodium BiCarbonate (helps make lidocaine last longer), must crush this.
            2. 100mg Elmiron, open capsule and put in instillation

            3. 50mL Preservative Free Lidocaine 2%

            4. 30,000IU Heparin

            5. For those people finished with trying to have children or that are on reliable contraception, he often uses Cytotec, 200mcg also to be dissolved in instillation and then he has you do this component for up to nine months.

            Any Questions? Please let me know. I have a story posted at the bottom of this in my signature link I think. I need to find the post and update it. Please let me know if you would like for information.

            -April
            Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

            Comment


            • #7
              are you skipping number 5? I would have to since I am not done with wanting to have children just yet even though physically all odds are against me.........

              just out of curiosity has his protocol been helping your IC symptoms to feel better and which symptoms do you feel have had a benefit from this treatment?

              I always tell my Doctor what other Doctors are doing in case he wants to try something new with me. I figure what the heck at this point after all I have done and all of the meds I take anyway, whats a few more to add to the list.........

              oh and also the fertility drugs that I took which happen to be the exact same as yours,, stimulated 7 mature follicles so if you can handle this form of treatment which I could not, hopefully you will get your miracle babies. I wish I could have tolerated those IVF injections.
              Last edited by Kara29; 07-16-2009, 10:19 AM.
              Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

              "One hour at a time, this was NOT my American Dream but it has to work out somehow."

              I also have some journals of my journeys, past and some present at:
              http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

              Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

              Comment


              • #8
                Re: IC Formula, etc.

                Hey Kara,

                How are you feeling tonight? Is the scar tissue better? I have a DNC scheduled if we do not conceive this month and I will know it about three days if my period does not start. I used Clomid last month and I know smells are really, really bothering me at the moment for some reason. All I have wanted to eat is egg salad. Yes, I am skipping number five (the cytotec part). You CAN use it as long as while you are, you are using reliable birth control and then one month after you complete the course of treatment, you can get off bc. I had GREAT success with it and now am doing Sodium Bicarbonate and Elmiron along with the Heparin and Lidocaine and am feeling tremendously better. PLUS, the Cleveland Clinic prescribed me 10mg-15mg of Valium at night at this appointment and it helps SO SO much. I don't even think I will need narcs anymore since the Ultram and Valium and Vistaril work so well together.

                I do have some questions about the urinary diversion surgery. I have considered it because I am SO tired of taking medications. Can you tell me more? I would love to call you when it is convenient or you can call me, whichever. My number is 318-278-9360. I do not mind people seeing on the IC Network as we are all in the same boat here.

                So, anyway, if you have anymore questions, please let me know and I would be glad to answer them!

                ~April
                Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                Comment


                • #9
                  Oh, I am handling the fertility drugs ok. I do not know how the GonalF and Ovadrel will affect me because I start them in August after my DNC and uterine polyp removal. The main symptom I am having is bad headaches, but once I started taking the Magnesium and B2, it improved tremendously. Plus combine a couple Tylenol and some Valium and you are good. I can even drive on Valium which is a plus. I only take a 2.5mg when I drive because I would not want to get too tired.

                  Also, a new interesting development is that I am positive for a couple new things: Anti-Malarial Hormone and a form of Tuberculosis that is in my bladder. Apparently, I was exposed in one of my many hospital stays or when I was in in M.S.W. school and interned with lung and pulmonary patients with cancer and other lung diseases. I have it in my bladder only and get a chest x-ray every six months. I also JUST tore a freaking ligament in my knee and now I have to possibly have surgery AFTER my surgery for reproductive issues. I wish they could just do it all at once. Crutches are no fun!

                  Well, hope you have a great evening. Off to play some Wii.

                  -April
                  Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                  Comment


                  • #10
                    April, I will PM you my number and you can call me during the day.
                    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                    I also have some journals of my journeys, past and some present at:
                    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                    Comment

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