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I am SHOCKED! Wish me Luck!

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  • I am SHOCKED! Wish me Luck!



    (Kara, of the thousands of patients on this board, you have had one of the most difficult journies of all and yet, despite all of that, you still focus on helping others. Wow, you definitely deserve the courage award for this new development! - Jill )

    Due to the urgency feeling in my urethra that has never gone away with anything I've tried over 9 years which has caused me to be fully disabled, I was finally diagnosed with Pudendal Nerve Entrapment last month. I am going to drive 8 hours to NH to have a more accurate test for Pudendal Nerve Entrapment. This test was designed to find out how much of the nerve is trapped and where. It's an EMG of the Urethra. They will be sticking several needles into that area as well as electric shocks to measure the nerve conduction. I will be fully awake for this! There are only 3 PNE Surgeons that do this specific test in the US. Otherwise I'd have to go to France. Yesterday, I had an EMG done on my back, neck, arm, hand, leg, and foot. I was so in shock due to the severe pain the needles caused, that I could not drive home. After I got home, I cried for hours. I wish I was stronger!!! I can hardly take knowing that this test will be perfomed on my urethra, vagina, rectum and the "other" most private part of my female body..... It was one of the most painful tests I've ever had to endure, almost as bad as the urethral dilatations that they did while fully awake several years back. I am so scared about this that I was going to back out. They can not use any anesthetic because they need to get an accutrate measurement of how the nerves and muscles respond to touch. They will be moving the needed around in the nerves that they test. I've been waiting for so long to figure out what has happened so that I can move on with life. The Doctor told me last night that after all of the stuff I've been through, that he thinks I will do great.........I'm still scared. I'm Human.

    For the past two months I've been trying to find out what is wrong with my tailbone and why I can not sit down any longer. This Doctor told me last night that the fire that I've been having in my tailbone is caused from the Pudendal Nerve Entrapment. He thought he had mentioned this to me before. I wish that were the case!! My test is to be followed by 3 PNE nerve blocks, March 19th, 27th, and April 2nd. For each nerve block, they have to put me to sleep. This is in hopes to try to deactivate the nerve over time. They also have me putting a compounded, buffered lidocane cream on the urethral area every 2 hours indefinitely. This is also in hopes to deactivate the nerve over time. The financial strain of all of this is putting us in a very upsetting position. If these things do not work, they will do a very risky surgery to Decompress the Nerve.

    It's been a long 9 years. I hope they come up with something they can work with.

    Thanks for the support to all of you who've given it to me over the years! Many Hugs to each and every one of you!


    This journey starts now......wish me luck! I am going to NEED it!

    Kara
    Last edited by icnmgrjill; 03-08-2007, 12:56 PM.
    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.

  • #2
    WOW, I will certainly keep you in my prayers. I cant even imagine.

    Comment


    • #3
      I will keep you in my prayers, Kara!

      It's normal to be scared (I'm sorry that other test hurt so much) but I'm really excited for you because I think this could be it, this could be the thing that gives you your life back!

      I had a percutaneous stimulation test done for the Bion, in that same area you are talking about now. They gave me a shot of anesthetic, in that area, which felt kind of like when you get a shot at the dentist. It stung for a couple of seconds, and then I was fine. Then I was all numb, and the needle went in, and I didn't feel it.

      The test itself didn't hurt except for one part where they were moving the needle in and out with the stim set on high - they aren't supposed to do that, because they hit all kinds of nerves - if they start doing that with you, tell them to turn the stim down! Otherwise, it was a painless (but embarrassing) test.

      Keeping my fingers crossed for you - things will be okay!

      Blessings,
      Lori
      P.S. You aren't weak, you are one of the strongest women I know of!

      Comment


      • #4
        sedated

        Hi Kara,
        Is there a reason they can't sedate you somehow? Maybe conscious sedation? I am excited for you that you have an answer but am thinking there must be a way to do these tests without you being awake...no??
        I will keep you in my prayers...
        Lori

        Comment


        • #5
          I've never even imagined what you must be going through!

          Kara, my poor, poor thing. I have been suffering the pain and disabilities of IC for 14 years, but my history is nothing compared to what you have had to endure. I had no idea that it could all come to this. Every question I have ever asked my Urologist about IC, he answers with "I don't know", or "We don't know yet" and I've always been very confused about what is all really involved with this disease. After reading your story tonight, my heart goes out to you and your family. I hope that you can find joy, in spite of sorrow, light in the darkness and God's Angels with you, always. I will include you in my prayers every night. You are not alone on this journey, Sweetie, we're all there for you, so you just have to reach out. Lots of love and prayers and blessings,
          Curlette
          Hugs,
          Curlette

          Drugs I use now:
          HM Contin 12mg twice daily
          2 mg Dilaudid for breakthrough pain
          Temazepam for sleep
          CES orally

          Drugs I have used in the past:
          Elmiron
          Elavil
          Gabapentin
          Vagifem
          Lomotil
          Ativan
          Buscopan
          Demerol
          Flexeril
          Way too many to list!!!!!

          Medical History:
          Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
          I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

          Comment


          • #6
            Kara, I will be right here for you through this journey
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN 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


            • #7
              No Anesthetic

              Originally posted by Kara29
              They can not use any anesthetics, local, general, and or twilight because they have to have a very accurate measurement of how the nerves and muscles respond to the needles and electricity as well as touch. They will be moving the needles around in the nerves that they test.
              "I think I can. I think I can..."
              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
                Kara, Good luck to you on your tests. They sound horrid. It sounds like you are a very strong person though and the upcoming tests won't be easy but at least you are finding out what the problem is. That will mean a lot for your peace of mind.....at least the end of pain might be near. You will be in my thoughts......Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment


                • #9


                  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


                  • #10
                    You know we will all be thinking of through all of this. As well, I can not imagine. Good Luck and just try to be in your most happiest place when the test is being done. When ever something terrible is being done to my body or embarrassing, I always think where I am most happy, vacation spot, seeing my kids on Christmas morning, etc. It does help some.

                    Comment


                    • #11
                      Oh Kara I hope so much this will be the thing that will work for you. I love the little saying you said, "I think I can, I think I can. I can't believe they finally finding out what is causing you all the problems. Now they know hopefully you can get relief.

                      Sending hugs, Trishann

                      Comment


                      • #12
                        thank god it seems like you may have an end in sight from all this pain.you are a very strong woman,i know you can do this.good luck kara,i will be thinking of you.

                        Comment


                        • #13
                          I know you can! I know you can! I know you can!
                          love you! Sandra & family!
                          "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/

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                          • #14
                            Kara I am sorry that you ent thru such a painfuil test and have another one coming.
                            'The will of God will never take you where the Grace of God will not protect you.'

                            Comment


                            • #15
                              Kara,
                              I am so sorry you have to go through all of this but if anyone is strong enough to do it.....you are. If I looked in the dictionary under the words courage, stength, determination, hope, compassionate, caring, kind, and giving, I would find your name listed there.

                              Just know that we are all there for you, pulling for you, and sending many, many prayers your way
                              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

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