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  1. #1
    ICN Member Kara29's Avatar
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    I need SOMETHING good to happen!

    The only pain medication that I am taking at the moment is Lyrica and it's doing nothing for me at the highest dosage. There is nothing left to try as far as oral medication and patches go. The current pain clinic wants to do a peripheral nerve stimulator and or spinal cord stimulator, but I have decided against this as I have an Interstim in there and dont want to go down that road again. The only other option at this point are trying different nerve blocks. I have a pain management appointment tomorrow with my current pain management team, the one that has been awful working with. I am going to give them one more try while I wait for the pain management clinic in Rochester, NY to decide if they will take my pain management case. I am going to ask the pain doctor tomorrow about a nerve block that the Rochester Clinic said may work for me. I know this current clinic does millions of nerve blocks a week so I know they will know what I am talking about. "Something Ganglion or Ganglia Nerve Block" if anyone knows what this is, let me know. Anyway, I am going to ask them about this tomorrow and see if I can actually get one done while I am waiting for the Rochester Clinic to decide. I just want to try this while we wait to hear from the other clinic.

    They've given me nothing to hope for so far. Let's hope tomorrow they will consider the nerve block route. If not, I was done with them awhile ago, so it will be of no loss. I will just have to wait to see if the Rochester clinic will take my case at that point.

    Here's wishing for something good to happen tomorrow with pain management!

    Kara
    Last edited by Kara29; 10-30-2006 at 04:45 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. #2
    ICN Member Trishann's Avatar
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    Kara, I hope the best for you. I hope something will come along that will help you and get more compassion people around you. Let us know Kara what was done and hoping they can figure something out for you.

    Sending plenty of hugs,
    Trishann

  3. #3
    ICN Member Katrina's Avatar
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    Hoping and praying for you!!!!!!!
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
    http://mandksales.net
    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.
    or find me on facebook http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

    carmelann@charter.net please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!

  4. #4
    ICN Member Mel53H's Avatar
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    Sweet Home. Or
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    You have gone through too much pain and agony. It is time for some relief. I am hoping and praying that everything goes well for you tomorrow.

    Much Love,

    Mel
    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

  5. #5
    ICN Member Claredale's Avatar
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    I hope you can get some good new from the appointment.

    Hugs and prayer, Tracey

  6. #6
    IC Friend ChrissySunshine's Avatar
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    Hi Kara, I wish you luck at your appointment today....it IS about time for something GOOD to happen for you!

    I had a superior hypogastric plexus block at my former pain management doc's that did absolutely nothing for me. I think they inserted the needle around L5.

    I had a consult with another pain management doc who recommended another type of nerve block (can't remember what it was called), something about going right into the nerves in the extreme lower (lumbosacral?) spine (like into the nerves near your tail bone). It sounded different than the other block, and I would have been willing (probably) to try it, but for me, with no insurance, it was not an option. The way this doc described it to me, it did sound appealing, like it might help.

    Sorry, I can't give you any CLEAR info on this, but just wanted to offer you what I know (which unfortunately is not MUCH!-sorry!). I wish you luck today on your appointment, let us know how you make out!
    Thank You all so much to everyone here for all your sharing, caring and support!
    < My "Bear"
    CurrentTreatments:
    Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
    IC Diet
    Hydroxyzine 50 or 100mg at night (Is restarted)
    Zoloft 100mg 4/8/07 (Is restarted)
    Klonopin 1/2 mg 4 X Day (started 3/17/07)
    Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

    Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
    Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention


    My Myspace page - http://www.myspace.com/42620225

  7. #7
    ICN Member
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    I have my fingers crossed Kara!! I REALLY hope something good happens. I know this is a stupid question, but you have tried all the oral pain meds like oxy ir, morphine, etc? I know you probably have, I just was wondering if none of those work for you? You poor thing! Well we are here for you and anxious to know how it goes.
    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!

  8. #8
    ICN Member Kara29's Avatar
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    Thumbs down Medications I have tried including one today (Opana)

    I am highly allergic to:

    Morphine
    Demerol
    Methadone
    Compazine
    Anzemet
    Reglan
    Bactrim

    Medications that I have tried for this nerve pain.

    Several Different Birth Control Pills
    Fertility Drugs
    Accupunture and Relaxation
    Elmiron
    Dicyclomine,
    Ditropan,
    Ditropan XL,
    Detrol,
    Detrol LA,
    Pyridium,
    Pyridium Plus,
    Buspar
    Urimax
    Enablex
    Pyridium
    Claritin
    Zyrtec
    Ranitidine
    Allegra
    Soma
    Felxeril
    Benedryl
    Hydroxizine
    Celebrex
    Vioxx
    Levsin,
    Celexa
    Lexapro
    Paxil
    Prozac
    Zoloft
    Doxepin
    Elavil
    Desipramine
    Sinequan
    Imipramine
    Cymbalta
    Effexor
    Wellbutrin
    Trazodone

    3 different Nerve Blocks (I think they were some sort of hypogastric Nerve Blocks)
    Nerve Stimulation (Interstim targets nerves in back S1, S2, and S3 around the bladder)
    Tens Unit
    Botox
    Opana (the newest pain med on the market)
    B and O Suppositories
    Moprhine
    Demerol
    Fentanyl
    Methadone
    Dilaudid
    Hydrocdone
    Oxycodone
    Darvocet
    Ultram
    Lyrica
    Keppra
    Neurontin
    Topomax
    Tegretol
    Lamictal
    Clonidine
    Injecting Lidocane and Marcane
    Valium
    Xanax
    Ativan
    Klonopin
    Serepax
    Baclofen
    Guiffenisan
    Keppra

    Interstim 2001
    Cystectomy 2002
    Urethrectomy and Indiana Pouch 2006

    The Opana like all other narcotics made the urgency worse. I just called the pain clinic to let them know that the Opana made the urgency worse. The nurse is calling the head of the department to see if they can try some different types of nerve blocks now that my bladder and urethra are gone, it's really nerve related at this point, so it stands to reason that we'd try some nerve blocks again. If successful over a few tries they do nerve ablation, where they inject the nerve with something to kill it or them. I am waiting for a call back from her or the doctor.

    I am losing hope and the urgency is so bad that I have to keep catherizing my brand new stoma and it's beginning to really hurt. I don't want to risk scar tissue there and another major operation.

    Like I said, I really need something good to happen NOW, not months from now! I have nothing to take for the pain that the Opana (Pain Med) caused! So multiply the pain I went in with and live with everyday times 100 right now



    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.

  9. #9
    ICN Member SandyRN's Avatar
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    Jul 2005
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    Charlotte, NC
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    I dont know if anyone has ever recommended a pain pump with a constant iv or im dose of narcotics, but you might ask for it if you haven't already. At this point I think it would help, especially if you took oral phenergan with it to make the narcotic work better, and to keep you from being nauseated with the meds.....I think it would dramatically help you, and I KNOW that this is a viable treatment out there for people with cancer pain, etc...you certainly deserve it.

    Sandy
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

  10. #10
    ICN Member SandyRN's Avatar
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    ps...I see that the narcotics made things worse for you....that was oral meds, right? Scratching my head because you've been on everything that I could ever think of except for this pain pump......it's a thought.....
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

  11. #11
    ICN Member Kara29's Avatar
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    Personal Reasons why I don't want a pain pump

    I have an interstim that I dont want them removing it due to not wanting to have any more disasters. My interstim experience going in was not great and I just dont want it removed to be replaced with another pump or stimulator. My back is the only place I can lay and I dont want to jeopardize that area to Interstim removal and then another surgery right there. No peripheral stimulators or spinal cord stimulators. I am allergic to most pain meds and by allergy I dont mean itching. I mean that most of them cause close to death experiences. Not to mention the fact that I am only 30 years old and still would like to try to have a baby by some chance and I don't want pain medication that makes the urgency worse anyway being pumped into my already compromised system. Plus not wanting to be on any medication while pregnant if that were to happen.

    I tried to explain in my original post that I dont want these types of devices. I'd rather go through another bladder removal than go there.

    Plus when I did take the Fentanyl Patch for three years, it took me 3 months to get rid of the withdrawls the withdrawls made me so sick, someone had to be with me everyday for the whole 3 months.

    Despite all of this I've been willing to try just about everything they throw at me even with my past allergies.

    Sandy, thank for the thought, I just don't want the pain pump for the above and very personal reasons. Does this make sense? Hence, moving in the nerve block direction and maybe someday with the help of a Neurosurgeon, ablation. Dr. Moldwin was the doctor that spoke to my surgeon regarding the trial of a spinal anesthetic over time and if it works well, the possibility of cutting or killing the nerves, This may be the only option for me. I just have to find a pain management doctor willing to start the Spinal Anesthetic process here where I live.

    They've even said that its going to be very hard to do the nerve blocks because of the scar tissue of just having an interstim in there. Taking it out would cause more scar tissue and more problems.

    Thanks again for the thought of a pain pump but we've already discussed this not being an option for the above reasons.

    Kara
    Last edited by Kara29; 10-31-2006 at 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.

  12. #12
    ICN Member SandyRN's Avatar
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    Charlotte, NC
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    I'm guess I must of missed the pain pump discussion........
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

  13. #13
    ICN Member Emma's Mommy's Avatar
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    Apr 2006
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    Syracuse, NY
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    Kara i know you said you tried all the pain meds.....


    but all i can say is WOAH!!!

    i will be keeping that list for when i need new meds to try
    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)




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