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I am SHOCKED! Wish me Luck!

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  • #46
    Kara you'rs such a strong person i really give you alot of props for everything you have been through.

    if you need ANYTHING when you get back to Syracuse don't be scared to ask!

    I make a mean chicken parm and can call for take out with the best of them


    i hope your test goes well and it isn't too painful.....and don't worry i know you can do this!
    Erika
    wife to Jeremy
    mom to Emma (3-8-05)
    and Natalie (7-23-07)


    Meds i'm currently taking:
    Lortab as needed for pain


    Meds that did not help:
    Detrol LA
    Lexapro (caused urgency)
    Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)



    Comment


    • #47
      Oh Kara good luck! I am sending big hugs and cant wait to find out how it goes. Just think of your lovely Hawaii beach!
      love Sarah
      Current meds; , effexor 37.5 mg 2 times a day, and lyrica 100 mg 3 times a day, lots of reading and snuggling with the pets!

      Comment


      • #48
        can't wait to hear how it went!
        Erika
        wife to Jeremy
        mom to Emma (3-8-05)
        and Natalie (7-23-07)


        Meds i'm currently taking:
        Lortab as needed for pain


        Meds that did not help:
        Detrol LA
        Lexapro (caused urgency)
        Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)



        Comment


        • #49
          test

          kara,
          I am praying for you. I feel like the doc will come up with a solution this time! I pray that your trip will be worth it! You are such an encouragement to everyone! You go girl!
          Blessings & Hugs!
          Eva

          Comment


          • #50
            New Hampshire PNE Specialist

            With all of your prayers and support, I made it through the EMG but it's not something I ever want to have to go again.

            We are back from New Hampshire. The Doctor was something special, VERY compassionate and understanding! He took more time with us than any doctor in 9 years has given to my care. He talked with us for almost 2 hours. He answered all of our questions and concerns. We were able to communicate easily and honestly with him. There are no easy answers with what is going on with me. The EMG was inconclusive and may be an indicator of just how entrapped or damaged the Pudendal Nerve Is. There is no way to have a certain answer with any PNE case. The physical exam that he did revealed some classic signs and symptoms of PNE and also some unusual findings. He would like me to continue with my treatments in Rochester, NY. That includes 3 more Pudendal nerve blocks. He wants me to find a Pelvic Floor Therapist in my area to help with some Myofascial Pain Release of my Pelvic Muscles. They are stuck and barely move. He wants me to continue communicating what is happening with each treatment as it will be very useful to know what to do moving forward.

            He is suggesting a Vestibulectomy and Pudendal Nerve Decompression Surgery if I don't get any relief from my upcoming treatments.

            Despite the pain, we were very happy with our trip! I will continue to move forward knowing that there is help!

            Love and Hugs to you ALL!

            Trip to PNE Specialist, New Hampshire 2007



            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


            • #51
              Kara Im so glad your home. Your new picture is beautiful. You look stunning ! i've been thinking of you & your Mom , How's she doing? call you later !
              Love & Hugs Sandra
              "Never Give Up."

              To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

              My Photobucket Link:
              http://s237.photobucket.com/albums/f...ramack_photos/

              Comment


              • #52
                im glad everything went well!
                Erika
                wife to Jeremy
                mom to Emma (3-8-05)
                and Natalie (7-23-07)


                Meds i'm currently taking:
                Lortab as needed for pain


                Meds that did not help:
                Detrol LA
                Lexapro (caused urgency)
                Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)



                Comment


                • #53
                  Glad to hear from you. You have been on my mind a lot over the last couple of days. (((HUGS)))
                  Sharon

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/diet/


                  IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                  Comment


                  • #54
                    Hey! Glad your back and that part is over with!

                    I like your hair in the new picture. Did you have some highlights put in it? It looks nice.
                    Meds I take:
                    Elmiron, Elavil, Vagifem- for IC
                    Albuterol, Flovent, Atrovent- for Asthma and lung problems
                    Paxil, Clonazepam- for depression and Anxiety
                    Atenolol- for rapid heart rate
                    Nexium- for Gerd
                    Levothyroxin- for Hypothyroidism
                    Lasix, Pottasium- for edema
                    Lipitor- for High Cholesterol
                    I coated aspirin
                    02 at bedtime

                    Comment


                    • #55
                      Hey Kara just been thinking about you alot. I am happy to know that there is hope and you will have someone working with you.
                      Just wanting to send you hugs, Trishann

                      Comment


                      • #56
                        Glad to see you made it back in one piece! I am so glad he was kind and compassionate. Glad to hear he had some ideas for things to help you. I hope things get better without the surgery, but if you do have the vestibulectomy, let me know if you have any questions for that part. I will be glad to answer anything I can.

                        Love and hugs,
                        Amy

                        Comment


                        • #57
                          I'm Here For You!!!!

                          KARA--

                          I'm so sorry that you are going through such terrible situations right now. How is your Mother? I'm so worried about you, but I am relieved that SOMEONE finally diagnosed you with this terrible pain you've been having.....I wish I could be there with you while you undergo this horrible test!!!

                          I also want to say how much you deserved this award!!!! I have yet to find any material via books, internet, and Doctor's that have helped me out as much as you have. You've been so there for me during my bladder removal and Indiana Pouch. Even when you are in such terrible Pain, you always put my needs and questions first. I cannot say enough to Thank You. God certainly Created a Wonderful Person!!!!

                          I'm going to try to call you----

                          Love and Huge, Huge Hugs!!!!!!

                          Laura Redfearn

                          Comment


                          • #58
                            So glad everything went o.k.
                            Will keep you in my prayers
                            Miss Bessie

                            Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                            Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                            Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                            Comment


                            • #59
                              Wow, Kara, my toes curled and rear clenched when I was reading the description of what you had to go through. My own anxieties with medical procedures made my stomach flip. I am glad you had a compassionate doc. Sometimes these specialists are so....jerkish. the further they get from the person in the patient, the more they view the patient as simply a problem to be solved. (I get so frustrated with that)
                              You are very courageous, and I'm not trying sound trite. I get so down and angry with my own issues, try to infuse humor but sometimes nothing works. You are doing what you need to do to get life on track!!! I admire you. My own experience with trying to implant a spinal nerve stimulator was so traumatic I struggle with anything else.
                              I hope this helps you!!!

                              Tracey
                              I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                              Medications I CURRENTLY take:
                              90 mgs Ms contin (45 mgs Am/PM)
                              Percocet as needed
                              Topomax 100mg day
                              Ambien 10 mg bed
                              desipramine 25 mgs




                              If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                              Albert Einstein

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