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  • my lifesaver with pictures

    Hello Everyone,
    Today has been kind of rough, but, I am ok..
    Life savor Day one....
    I got up this morning and arrived at 7 am for pre-op. Things moved rather quickly, I got my IV in and 2 different types of antibiotics. I was Dr God's second surgery this morning. I really didn't need to be informed about the stim, lol seeing that I have had one for 4 years, but Ilene refreshed my memory, and we talked about how much smaller the new little guy is.
    Dr God comes along and grabs my toes and asked how I was. He told the rep that, all the impediments (know I spelled that wrong, lets blame it on the pain meds) read normal, with the exception of the 2 leads that did not work. The problem was that every time I was reprogrammed with in a short period of time the sensations went back into the generator. He also told her that her that on the 16th when he removes the old generator he wants it looked at, and the results, because, even tho it is off, I still am feeling sensations that it was on. They also have had another patient with the something happening. (its nice to know I am not the only one). Dr. God told me and the rep, when the new implant goes in he will remove the old one and the old leads. He then asked me do I want to do it that way, if I wanted to he could just take the old one out and put the new one on my left side, seeing thats where the new leads were going. I told him no we will go with what the original plan was, to thread the leads thru to the right and put the new one in that spot, vs having being cut on 2 times. I couldn't imagine having to sit lol..
    Dr God told hubby that this surgery would take about an hour and a half. (The last time, my nerves quit responding, and he did everything by the x-rays) Before they took me back they had put something in my IV and I got a wee bit loopy, we were talking about Dave not wanting to carry my purse! I giggled and said, an this is coming from a man who ran in CVS to get me tampons and carries them out of the store with a bag. (that of course was a few years back, and had a few beers)
    Moving right along, in the operating room, they had me roll off one table onto the other, and I was thinking Oh yea, I will end up in the floor.. not sure why I thought that. I remember starting to roll but that was it. They put oxygen on me and I recall ripping it off. I don't know why I did that.
    Next I recall feeling Dr God finding the right location for the leads. I remember crying real hard, he told me he was really sorry, he wanted to make sure that he had them exactly right, and in the right spots. I remember a few times, I kept lifting my head up and was counting how many times I got poked.. think it was like 16 times. Then he hit one and I let out a very loud OOWW and he said I am so sorry. He asked someone how much something they had given me, and to please give me more.. that was it I don't remember
    another thing.
    I remember being in recovery and asking for something for pain, she told me she would give me some Dulidid. Then I remember her waking me and said I have been back there 30 mins, did I feel like getting up, eating and something to drink. I was very thirsty. I had a couple cups of 7-up and 9 gram crackers.. guess I was pretty hungry too. We got me all together and dressed to go home. With 2 Tylenol 3's for the ride home.
    Dave hit the McDonalds drive thru because I really wanted a cheese burger.
    We got home, I tried to lay down, but, What I expected to happen did. Jake wanted his mommy, and kept screaming for nearly 2 hours, so I just gave up. Cathy called (wow seeing she bailed on me for baby sitting today) She asked if I was ok and did I need anything. I snapped at her that I needed to rest, and Jake to stop screaming MOMMY every time I tried to lay down, She says well what are you going to do? I said, I suppose I'll do my best to sit in here and relax so he won't scream.. Then she asked did you go and get you rx's? I said no.. She came over and got Jake, and is going to get my rx's, and the baby some diapers :woohoo:
    So anywho, Its 5 pm.. I am now going to lay on the couch, because I am hurting pretty good..
    Here are some photos I took today. after having your butt cheeks taped open, there isn't anything more embarrassing.. lol (they are edited, so you don't know its my butt)
    http://i25.photobucket.com/albums/c6...al5-2-0708.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0707.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0706.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0705.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0704.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0703.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0702.jpg
    http://i25.photobucket.com/albums/c6...al5-2-0701.jpg
    http://i25.photobucket.com/albums/c6...ilgreybox2.jpg
    http://i25.photobucket.com/albums/c6...ilgreybox1.jpg
    'The will of God will never take you where the Grace of God will not protect you.'

  • #2
    Thanks so much for posting your experience and the photos. I'm very glad everything went well! I hope you feel better soon!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment


    • #3
      Cindy,
      I'm so happy to hear that you are home and doing okay. I was thinking of you all morning at work and checking the boards when I could (not supposed to at work) to get an update. I hope that you can get Jake to calm down a little bit so you can rest. I know how that goes, everything I've ever had surgery since Griffin was born, resting was not happening as it should because he always wanted Mommy. I hope you start feeling better quickly and that you got good pain meds
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment


      • #4
        I am glad you've got some help for taking care of Jake. Take care of that incision and make sure to rest as much as possible!!!!
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

        Comment


        • #5
          OUCH!!!!!
          I am so glad it was a success...But dang it looks painful..But I know you are glad to have it being that the other one worked so good..Call me if you need anything and I will be on th enext plane out there..lol I wish anyhow talk to soon..(((((((((hugs))))))))
          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


          • #6
            Glad to hear you're doing good!!!!

            Comment


            • #7
              Glad to hear you're doing pretty well and everything went fine

              I am sorry they didn't give you enough sedative at first... ugh SO, SO glad you were given some more When I got my trial done they gave me a buttload of Diprivan, so I don't remember anything except flipping over to my tummy in the beginning and then dreaming about going to the Bahamas with hubby towards the end .
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. 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.

              Comment


              • #8
                The last time I quit responding, so he didn't want to over do it again I suppose. It will all be a blur after a while lol. I am in some pain right now, but took a vicodine. Dr God told Dave I did very well, it only took an hour. I believe he did disconnect the old generator seeing there is an incision there.
                I am swelled up, I am not sure what hurt the most.. the incesions, where they threaded the wires, or where the wires are at.
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  Hi Cindy,

                  So glad to hear that things went good for you ..
                  Take care of yourself and watch those incision...

                  Hugs, Debbie
                  Thinking positive has got me through to another day!!

                  Comment


                  • #10
                    Thank you SO much for your informative posts! My trial is 5/21 and I really want to know what to expect. Does everyone have that kind of sedation for the trial?? I'd rather be totally asleep during the whole thing.

                    I hope you will recover quickly. It sounds like you don't have an option with small children in the house. Take care.

                    Comment


                    • #11
                      Cindy...Thanks for posting about your experience and showing us the pictures. As you know, there are several of our "sisters" who will be going through this surgery soon. This should help them a lot. I know it would me if I were going to have it done. I don't do well with the unknown.

                      BTW...Is you doctor's name really Dr. God? If so, I bet that gives you a lot of comfort.
                      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


                      • #12
                        glad all went well.

                        Comment


                        • #13
                          Tacy99, You have to be able to respond to the doctor if he asks you what you feel, and, where you feel the sensations. I have an extreme low tolerance for pain, so not every one will experience the same amount of pain as I did (I remember it happening, but don't exactly remember what the pain felt like). For you for instance, it may not bother you in the least.

                          I feel great today. I have been up for 2 1/2 hours, peed 2 times with a volume of 200cc's. I normally without the stim have peed at least 6 to 8 times with volumes between 50 and 100 cc's.

                          Sharon, no lol, my Doctor is Dr Ken Peter's, he is top 10 in the U.S. of IC specialists. He knows everything you ever wanted to know about IC. He is kind, patient, a great bedside manner and he listens to what you are saying, not what he wanted to hear.
                          Last edited by tigger_gal; 05-03-2007, 04:30 AM.
                          'The will of God will never take you where the Grace of God will not protect you.'

                          Comment


                          • #14
                            Hence the Dr. God title. I don't blame you for calling him that. He does sound like it fits. Glad you are doing so well. (((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


                            • #15
                              Hey Cindy,

                              I am so glad that you are doing well. Now just try to get some rest.
                              Louise
                              West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                              [email protected]

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