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  1. 04-28-2009, 02:49 PM #1
    Kara29
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    A few more days and it will be over!

    The past few weeks have flown by very fast. On Monday we will be on our way to NH. Well Wishes to you all. I may not be around for awhile.

    However, I am going to document each step of the way via my camera and video. If you want to follow the PNE Case and what happens before, during, and after the Pudendal Nerve Decompression, you'd have to be a member of facebook, friend request me and then a daily video should show up. My Mom will be behind the camera and when she can't do it, I have a tripod. This will be the first time I've ever recorded an operation in it's before and after stages. Since I can't sit or type, I will be doing it via video.

    My facebook account is in my signature.

    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 These are old and my ICN Patient story is very old and outdated.
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  2. 04-28-2009, 02:55 PM #2
    Briza
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    Kara, I am not a member of FB but I am sure that I will be able to get updates from others here on the board who are. Still wishing you the VERY best of luck...I remember how very long ago it was when you were in the nacent stages of searching for a dr and planning this procedure, and so I am glad time is passing quickly for you now and I hope and pray for the very best outcome for you!!
    In remission since Aug 2009!
    New to IC? read this--IC Treatment and Diagnostic Guidelines--American Urological Association
    http://interstitial-cystitis-diet.bl...nosis-and.html     *** http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"
    Treatments that helped my IC,VV,& PFD symptoms: pyridium, elavil, tylenol 3, ibuprofen, lidocaine gel and patches, cold packs, heating pad, diet, lots of water
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  3. 04-28-2009, 03:29 PM #3
    ICNDonna
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    Just remember we will be with you through this offering our love and support.

    Sending gentle hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

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

    Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf

    You'll find my story at: http://www.ic-network.com/patientstories/donna.html

    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.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....
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  4. 04-28-2009, 04:05 PM #4
    leelee88
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    Many prayers headed you way through this time!
    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.
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  5. 04-28-2009, 04:24 PM #5
    SharonA
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    You will be in my heart, thoughts and prayers. (((Hugs)))
    Sharon

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

    Where I can be found most days.

    If not there, then here


    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.
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  6. 04-29-2009, 12:47 AM #6
    dyno
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    We will be there for you Kara, I am praying everything goes well.
    Jolene

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

    Information for Patients can be found here.
    http://www.ic-network.com/patientlinks.html


    Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




    Newbie Angel...I will be happy to answer any questions or just listen. Email me at joleneb2@yahoo.com

    "IC Angel 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."
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  7. 04-29-2009, 08:25 PM #7
    ICsmiles
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    Is it May 6 yet?

    Hi Kara,
    I think of you every day - - - it feels like the countdown is ON! I am waiting with bated breath for some good solid relief for you.
    I will be available for support and listening . . . and especially humor because sometimes that is the best medicine! You have helped me with that when I have been in pain and I hope I can do the same for you.

    I hope to do a recovery dance with you once you get through the initial healing stages. Maybe you should just tap your fingers and toes until you know you can really shake your booty without pain!!!! Wouldn't that be WONDERFUL! We can call it the "IC/PNE Dance" and send it across the wires from one side of the country to the other. How poetic! Really, sonnets should be written for those of us struggling with this pain day in day out. Symphonies and operas and great paintings ... well okay I am getting carried away but you get the idea. It's late, I'm tired and when I read about all our suffering I think we should all get to do something wonderful like floating around on clouds eating bon bons --with no weight gain-- and being pampered. sigh ...

    angel hugs
    Sharon aka ICsmiles
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://scaseyquilts.wordpress.com/
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, revealed classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left-sided pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain got worse. 2008 - Tried botox, nerve blocks (vaginally) and physical therapy with Dr. Felicia Lane and PT Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner of Phoenix, AZ 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. Perineal branches of nerve (which goes to urethra and base of bladder) had significant damage and were excised as needed.
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: bladder flare 3 days after. No more ketamine.
    Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Implantation of intrathecal pain pump. After 2 months of adjustments it became my new best friend. Success at last!
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  8. 04-30-2009, 03:39 AM #8
    purpletomorrow
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    Sending you warm hugs and healing, and best wishes for speedy healing and a future free of pain! laura
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  9. 05-01-2009, 02:59 AM #9
    Kara29
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    Yes it is May 6th. We leave on Monday. I am hoping this video deal works out. I just have to teach my Mom how to do it b/c my Husband is staying home for this one.


    Love and Hugs and Thanks to ALL OF YOU!

    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.
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  10. 05-01-2009, 03:04 AM #10
    wfarrell
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    best to luck on it all! I will be watching on FB
    [I]Dx: 10/08

    Meds
    Elmiron 3 X a day
    Effexor XR 75 mg 1 x a day
    Vesicare 5mg 1 x a day
    Nortriptypline 10mg 3 x a day
    Gabapentin 300 mg 1-2 x a day
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