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  • Dr. Brookoff's protocol

    For those of you being treated for PFD by Brookoff what is the "usual" protocol that includes injections, valium, interferential stimulators etc? I realize the severity may make some difference in the dosage or frequency of treatment, but if you would not mind sharing it would be very helpful and insightful.
    Thanks,
    Jean

  • #2
    Dr. Brookoff ..

    Another IC'er friend of mine is flying to Denver in June to start treatment with him. I can't wait to see how it goes for her. If she gets relief, I am going to make arrangements to go as well. We both live in Central CA and I've been all over CA to top IC docs with mixed results. I found out I am already doing some of Dr. Brookoff's protocol just from asking my doctors and showing them the literature, such as the valium suppositories - they're great.
    I would love to try
    - Interferential Stimulator
    - Trigger point injections of lidocaine or other pain-relieving substance
    - Cymbalta - instead of Pamelor/noritriptilene

    HOPE you find out more soon! Hope we all do! Thank goodness for ICN!

    ------
    IC since 1995
    PAIN, my constant companion - urethral, bladder & pudendal neuropathy, IBS, PFD, joint pain (fibro?)
    Hydrodistentions (2) 2000, 2005 - classic IC with glomerulations, mast cells, but good capacity
    -----
    WHAT HAS NOT HELPED: (This is my experience only; remember IC affects us all differently as well as our response to therapies)
    Elmiron- tried for several years
    Antibiotics of all kinds, antivirals of all kinds
    Urethral dilation (OMG!)
    Holistic Approaches (Chinese Herbalist & Acupuncturist in LA, CystoProtek and Algonot One, MSM, Glucosamin, Aloe Vera,
    Caudal epidurals (4) 2001, 2002
    Tests for urethral diverticula
    Pudendal nerve blocks (injections) 2006

    WHAT DOES HELP:
    Oxycodone, Hydrocodone, Atarax, Noritriptilene, Valium, Pyridium
    NEW!!!- Valium suppositories (WONDERFUL, insert at night), Lidocaine patches (applied over bladder area)
    IC DIET - don't even think of tomatoes, citrus, sodas WAAAH
    HORMONES (menopausal- monitored by Gyn)-DHEA, natural estradiol & testosterone drops, progesterone cream
    PREVENT CONSTIPATION- Miralax, Senekot, Smooth Move tea, Beano - do not be proud - these really help!
    WONDERFUL - Pelvic floor therapy, hot baths
    TOPICAL - Thermal patches, menthol patches - relief for hands, elbows, neck
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.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, 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 pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

    Comment


    • #3
      I have thought many times trying to get an appt. with him. Although, it would cost me a fortune, I am about ready. The Valium Supp. how do they work, is it better than taking it orally? Any response would be great. I tried Cymbalta, it made me soooo sick.

      Comment


      • #4
        Hi,

        I live in Fl. but asked my urologist if he would contact Dr. Brookoff and see what brand of interferential Stimulator that he uses in his practice. He called my dr. back and was very helpful. This was a few months ago, but he recommended the ULTRA-IF Digital Interferential. I use it 2x a day for 20 minutes. 2 electrodes in bladder area and 2 on lower back, per Dr. Brookoff's instructions. There's a label on my unit that says Advanced Medical Sales, LLC with a phone # 866-512-7252. I've found the valium suppositories to help more than the oral valium, but compounded meds aren't covered by my insurance and they're pretty expensive. I wish my dr. would have asked about the trigger point injections, but I'm grateful that he got the information on the interferential unit. I would love to see Dr. Brookoff to get the entire protocol. Hope this info helps.

        Comment


        • #5
          Valium suppositories ROCK

          Thank you to everyone who posted info...
          I haven't seen Dr. Brookoff but I take his articles to my uro and pain doctor and they have started to be willing to try things.
          1. LOVE my valium suppositories - they HELP - and yes, they are better than oral because the oral makes you sleepier. The suppositories reduce that icky neuralgia feeling so you can sit better and walk better.
          This site made it possible for me to get them.... Between the info from Jill and from Dr. Brookoff, my uro prescribed them and had them compounded at local compounding pharmacy, even though the pharmacist kind of looked at me like I was crazy.... They ARE expensive though -100 for $100, but worth every penny - I am trying to get my insurance to cover it, but it will be a drawn out ordeal I believe....
          2. My pain doc is starting me on Cymbalta this week as a trial - I have been on Noritriptilene but do not believe it is helping me. I have weaned myself down to 10 mg at night and will stop for a couple of days before starting Cymbalta
          3. I will be asking about trigger point injections and interferential stimulator next. THANK YOU for the info on it!
          [SIZE="2"][FONT="Lucida Console"]
          My blog: http://icandpne.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, 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 pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
          Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
          Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

          Comment


          • #6
            Sharon my Uro-GYN mentioned looking in my urethra for pockets of infection. Is this the same as urethral diverticuli? I am guessing yes? I don't want to put myself through the pain of anymore procedures right now until I can figure out if I'm responding to the IC diet and/or what is causing my flares. I am starting to think I have PFD because the diet doesn't effect me like activity does. The minute I start doing housework that requires me to bend at the waist then I will get super crampy in my bladder and this progresses into sharp pains in my urethra.
            The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
            First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
            Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
            Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
            Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
            BABY GIRL 10/28/08 *** BABY BOY 7/8/11

            Comment


            • #7
              urethral infection...

              Charisse,
              I always asked my uro to look at my urethra because it hurt so much and they always said it was fine, normal.I WISH they could have found infection or something treatable. Sorry can't help more ... now my hands and fingers hurt so i cant type anymore...i have joint pain that comes with IC too and it has been progressing ... waaah
              [SIZE="2"][FONT="Lucida Console"]
              My blog: http://icandpne.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, 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 pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
              Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
              Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

              Comment


              • #8
                Trigger Point Injections

                Sharon,

                If you get any information on the location of the trigger point injections, will you please post here? I would love to stay on the valium suppositories, but the pharmacist charges $43 for 12 suppostories. They help me much more than the oral valium. My insurance won't cover them at all!!! I really want to try the injections!

                Thanks,
                Debbie

                Comment


                • #9
                  Trigger Point injections

                  There is a lot available to read about as far as PFD, trigger points, etc.
                  The book, A Headache in the Pelvis, is good and here are some California doctors treating PFD and IC
                  Jerome Weiss, Pacific Center for Pelvic Pain, San Francisco
                  Dr. Rodney Anderson, Stanford and Dr. Wise - Stanford Protocal - they also authored the book mentioned above

                  Dr. Brookoff seems to be everybody's favorite IC doc for finding solutions to get us out of pain. I read everything he writes and every forum he contributes to and then pass it on to my uro here.

                  I have considered flying to Denver just to see him myself...

                  My insurance - Blue Shield - will not cover the valium suppositories either. I am charged $100 for 100 suppositories - but at 1 buck each it is well worth the relief I get.

                  Best wishes everybody - at least we are getting some measures of relief, even if a cure is not in sight. It wasn't that long ago that we could not get the pain management we needed, so thank you to the ICN and other IC advocates and doctors who are helping us.

                  Now let's just pray for the researchers and that a breakthrough happens in our lifetimes. I would love to have the ability to just have a normal day, going places and being involved with life again.
                  [SIZE="2"][FONT="Lucida Console"]
                  My blog: http://icandpne.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, 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 pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                  Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                  Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                  Comment


                  • #10
                    I contacted Dr. Wise and the PFD workshop they offer through Stanford is 6 days for $4000. That is a lot of money. I would like to hear from someone who has had success with it.
                    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                    Comment


                    • #11
                      Headache in the Pelvis Program References?

                      I too would like to hear from someone who has completed the Headache in the Pelvis Program. Last month, I spoke with Dr. Wise, but investing thousands of dollars with no references to speak with makes me leary. Most medical treatments don't cure IC, but perhaps this program could be helping people to improve the quality of their lives and it would be nice to hear about the amount of improvement. It seems more men than woman go thru the program and as we know from medical research the sexes do respond differently to medical treatments. Before I invest money into medical care there needs to be enough facts or evidence to justify it. If anyone has attended or know of someone who has please share what ever you can. Thank you.

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                      Originally posted by Charisse View Post
                      I contacted Dr. Wise and the PFD workshop they offer through Stanford is 6 days for $4000. That is a lot of money. I would like to hear from someone who has had success with it.

                      Comment


                      • #12
                        same feelings

                        Hi _ I contacted him too and ofcourse he invited me. I have the same concerns - I want some more female evidence. He should be able to get some local patients - but I think he is onto something - that a lot of pain, especially with spasms and if you have trigger points, and certainly pain outside the bladder - is caused by muscular tightness which leads to a feedback loop of pain and inflamation. I have a relative with IC so I think mine is more auto-immune and no pelvic floor therapist has found any trigger points on me, but I know my muscles and connective tissues are generally tight. Just the trip to SF and the 4K seems a lot. Then you have to follow his protocol. I've been trying to "feel" the tension like he says to, but I just can't feel it - I just feel the pain! And then my mind wonders off. I can't focus on the tension when in pain and I can't find the tension when I'm not in pain! I do think putting my knees up when lying down seems to help a little because that drops the pelvic floor.
                        I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                        Comment


                        • #13
                          The workshop is actually located in Sebastopol -about an hour north of SF and I live just 15 mins away from this town. But I still think it's a lot of money when you are not sure it's the main source of your pain. I thought since I was local that he might offer me something less intensive than the 6 day workshop. I really can't afford to take a week off work right now. Autoimmune problems run in my family as well.
                          The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                          First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                          Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                          Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                          Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                          BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                          Comment


                          • #14
                            Charisse,

                            It is too bad we don't know a female who has attended. Thought someone might have read this thread by now and posted some information on the benefits they saw from the program. Yes, $4,000 is a lot of money without large medical studies to back up the program.

                            Perhaps, the program wouldn't be a "cure" situation for you, but instead part of your health care program. IC can be like a puzzle and we have to find all the pieces and put it together, and sometimes it is extremely difficult to complete. I wish you the very best.

                            ICsmiles,

                            Thank you for sharing you have a friend coming in from Denver. If you have any information to share at a later date that would be great. It seems this program could take time to be completed and see results (i.e. a person won't know after six days because they need to go home and put the protocol into action for perhaps a year or more is my understanding.)

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                            Comment


                            • #15
                              to Charise

                              Charise -

                              Have you asked Dr. Wise if he is willing to have his therapist assess you without plunging into the big program? Maybe they could see if you had those trigger points. I think any descent program would owe the participants the chance to determine if they are suitable candidates.
                              PV
                              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                              Comment

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