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  • #16
    I would not spend $4000.00 on a 6 day workshop of any sort. I truly do not believe for a moment that you will get any relief from such a short therapy treatment. I think that IC patients eventually develop PFD problems, but resolving PFD problems will not rid you of ic. Please be careful because there are a lot of people out there trying to profit from people who are suffering and will make false claims to take your money. Reading "A Headache In The Pelvis" would probably be more beneficial and informative than being ripped off. I know how desperate we are to get some relief and would give our last dollar to have a normal painfree life, but please be careful, because we are vulnerable and can be taken advantage of by those who falsely claim that they can treat ic. Anyone charging an outrageous amount for a six day session is not an honest, and caring person. I don't think he's concerned with helping patients. His main objective is making lots of money very quickly. I would be very cautious and reluctant about his PT capabilities. I have read about others experiences with PT treatments and they were not very effective or helpful.

    Marsi4

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    • #17
      I have read the 3rd and 4th editions of "A Headache in the Pelvis" and was disappointed because while you got some useful information, you still have to go to Stanford to do the program. I ask myself "what's so special" about their therapy. I wonder if Stanford keeps a list of patients that are willing to talk about their experience with the program. I live in NW FL--why can't other therapists in the country be trained by their methods? I think I would be more inclined to travel to see Dr. Brookoff, or try the out-of-town program that Dr. Whitmore offers for IC/PFD patients. At least, they indicate that you will have a program that you can take home for your dr. to follow. I was diagnosed with PFD at Mayo Clinic in Jacksonville, but they couldn't locate anyone in my area that does pelvic floor therapy.
      I agree with Marsi4--I spent almost $3000 on an alternative method that was guaranteed to "cure IC." That was an expensive lesson for me.

      Best wishes,
      Debbie

      Comment


      • #18
        Headache in the Pelvis Clinic? External Stimulator from Dr. Brookoff?

        Hi All,

        Very interesting thread. Suprised no one has talked about the Headache in the Pelvis clinic on this board before. I talked to Dr. Wise about going.

        If you have gone to the Headache in the Pelvis clinic or know anyone who has can you please post about their experience and thoughts about it.

        Also, if you used the stimulator from Dr. Brookoff can you please post your experience or thoughts about it.

        (please private message me if you prefer, I will reply promptly)

        Thank you!

        Lisa

        Comment


        • #19
          Please share more

          Well, I'm newly diagnosed, and my doctor whom I'll be leaving in August said she couldn't think of anyone in my area (Denver/Boulder) who knew how to treat this illness.

          SO . . . please tell me more!
          Waves
          Diagnosed 6/4/07, also IBS, migraines, allergies,
          hysterectomy, previous fibroids, cysts.

          Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!

          Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day


          I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.

          Comment


          • #20
            The IF stimulator has helped me more than my TENS unit did, especially if I combine it with the pelvic pain CD that I ordered from the ICN store. I think I could get good results if I could combine the stimulator with valium suppositories and trigger point injections. The pain dr. here is only familiar with where to inject for levator ani syndrome and that took my rectal pain down to 0, but he doesn't know where to inject for the trigger points in the pelvic floor. I was hoping someone might post about that. The valium suppositories helped too, but my uro doesn't believe in daily use. The frustrating part is that these are all things that I could do here and I think could make a big difference--I liked that Dr. Brookoff was willing to take the time to call my dr. and tell him which IF stimulator he was using with his patients. That impressed me alot!!

            Debbie

            Comment


            • #21
              This site has helped me more than any doctor!! I read Dr. Brookoff's guest lecture when it was posted. My main symptom has always been pelvic pain, so I got really excited when I read about the valium suppositories, the IF stimulator, and the trigger point injections. I printed the lecture and took it to my urologist. I asked him if he would consider calling Dr. Brookoff because I wanted to use the same stimulator that he uses on his patients. I couldn't believe Dr. Brookoff called back. He told my dr. that there is a setting on this IF unit specifically for pelvic pain. It has helped alot and I got better results when I combined it with the Pelvic Pain CD. I use it 2x a day for 20 minute sessions. I'm in FL. and if Dr. Brookoff was still in Memphis, I would make an appt.--I haven't ruled out flying to Colorado. I have no idea how hard it is to make an appt. with him, but his compassion for IC patients in pain is overwhelming. He's the Director of the new Center for Medical Pain Management, so maybe that's why your dr. didn't think of him for IC because he's not a urologist.

              Debbie

              Comment


              • #22
                There are IC patients especially those with PFD who are on valium pills permanently according to Dr. Moldwin. (I think he may of even stated it in his book.) I am one of those people. The valium suppositories have to a lesser amount than the pills. Doctors...

                I have had a doctors do a pudendal nerve block on both sides when she couldn't locate the trigger points and it helped me a lot. In fact it is the only type of block that has helped me. Please be careful though about jumping on the pudendal nerve entrapment wagon because it is a very new diagnosis and area of medicine. Pudendal blocks are used sometimes during preg. labor so you might find a ob/gyn who could do them. It is hard to find a doc who knows how to do them. They are also done with CAT scan guidance and dyes, but that could be over kill and is expensive in my opinion.

                ads

                Originally posted by dbritts View Post
                The IF stimulator has helped me more than my TENS unit did, especially if I combine it with the pelvic pain CD that I ordered from the ICN store. I think I could get good results if I could combine the stimulator with valium suppositories and trigger point injections. The pain dr. here is only familiar with where to inject for levator ani syndrome and that took my rectal pain down to 0, but he doesn't know where to inject for the trigger points in the pelvic floor. I was hoping someone might post about that. The valium suppositories helped too, but my uro doesn't believe in daily use. The frustrating part is that these are all things that I could do here and I think could make a big difference--I liked that Dr. Brookoff was willing to take the time to call my dr. and tell him which IF stimulator he was using with his patients. That impressed me alot!!

                Debbie

                Comment


                • #23
                  Debbie,
                  Have you tried PT for pelvic floor dysfunction and pelvic pain? There are quite a few good PTs in the state of Florida.
                  ads

                  Originally posted by dbritts View Post
                  This site has helped me more than any doctor!! I read Dr. Brookoff's guest lecture when it was posted. My main symptom has always been pelvic pain, so I got really excited when I read about the valium suppositories, the IF stimulator, and the trigger point injections. I printed the lecture and took it to my urologist. I asked him if he would consider calling Dr. Brookoff because I wanted to use the same stimulator that he uses on his patients. I couldn't believe Dr. Brookoff called back. He told my dr. that there is a setting on this IF unit specifically for pelvic pain. It has helped alot and I got better results when I combined it with the Pelvic Pain CD. I use it 2x a day for 20 minute sessions. I'm in FL. and if Dr. Brookoff was still in Memphis, I would make an appt.--I haven't ruled out flying to Colorado. I have no idea how hard it is to make an appt. with him, but his compassion for IC patients in pain is overwhelming. He's the Director of the new Center for Medical Pain Management, so maybe that's why your dr. didn't think of him for IC because he's not a urologist.

                  Debbie

                  Comment


                  • #24
                    The physical therapist that I use in Memphis (Beth Sellhorn) actually went to
                    Dr. Wise's and trained. She is wonderful!!! She did so much to help me and I was so shocked to realize how many trigger points I have. She taught me how to work on my own trigger points. Unfortunately I have been flaring since mid Feb. so I have just started going back to her in order to get it back under control. She said that they told her she was the only physical therapist to take the program when she went out there a few years ago.

                    Janice

                    Comment


                    • #25
                      There are two Drs -- Dr. Wise PhD & Dr. Weiss, MD

                      I am not sure we are all speaking about the same doctors. There is Dr. Jerome M. Weiss, MD http://www.jmweissmd.com/employeebios.htm who has a PT in his office who trains other PTs, then the one we were discussing was David Wise, Ph.D. who wrote the book titled Headache in the Pelvis http://www.pelvicpainhelp.com/physical_therapy.html

                      You could be speaking of either one but from your PTs description it sounded like the MD -- Dr. Weiss

                      ads


                      Originally posted by JanL View Post
                      The physical therapist that I use in Memphis (Beth Sellhorn) actually went to
                      Dr. Wise's and trained. She is wonderful!!! She did so much to help me and I was so shocked to realize how many trigger points I have. She taught me how to work on my own trigger points. Unfortunately I have been flaring since mid Feb. so I have just started going back to her in order to get it back under control. She said that they told her she was the only physical therapist to take the program when she went out there a few years ago.

                      Janice

                      Comment


                      • #26
                        ICSMILES,
                        Can you share the pharmacy name and number that you can get the Valium compounded at $1 a suppository.
                        Thanks,
                        Susan G.

                        Comment


                        • #27
                          ads,

                          My urologist hired a bladder incontinence physical therapist. She thought everything needed to be strengthened not relaxed. She had me kegeling and measuring the strength. I was diagnosed in 1996 at Mayo with high-tone PFD and last year with the levator ani syndrome. I stuck with it over 6 months, but my pain levels increased tremendously. I would like to find someone new who is no further than 100 miles away, but I haven't found anyone yet. I will definitely check out the pudendal nerve entrapment. I'm not really familiar with that, but I will be careful. I'm also on permanent valium like Dr. Moldwin recommends in his book. I'm not sure it helps as much as it did in the beginning. What do you think? Thanks for the info about the pudendal nerve entrapment.

                          Debbie

                          Comment


                          • #28
                            Wow great thread. Can someone explain to me what the stimulator is? Is it like a tens unit? Or does it go inside your vagina? Also I had never thought of asking about a pudendal nerve block. How long does that last? My pain is only in my lower stomach, bladder and urethra so I'm wondering if a pudendal block would help that? So many questions. I saw an NP at my chiropractor clinic yesterday and she said she's willing to explore options with me to get some relief although their PT doesn't do pelvic work. She mentioned Lyrica or Neurontin so I'm going to talk to my Uro-GYN about these things and I'm continuing with my chiropractic although I don't think it's helping my bladder but since my bladder is flaring my lower back I figure it can't hurt to try. Debbie I wanted to say I hear ya on throwing your money down the drain on useless drs. I saw a conventional doc in 2003 and spent almost $4000 on his visits, allergy tests and supplements. He wanted me to cut all foods out of my diet for 6 mos and live off of rice, meat and citrus. I couldn't even eat lettuce. It was awful and I ended up with several viruses that year.
                            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


                            • #29
                              Debbie,
                              It is hard to find a PT who understand pelvic pain versus incontinence. The treatment you rec. for incontinence could have made you worse. Dr. Moldwin gave me some guidelines for finding a good pelvic pain PT, but it was still hard. I went thru three before finding the best one. Have you looked on the list here on this board and ordered the ICA's list?

                              You may not need to check out pudendal nerve entrapment, but instead just the block called pundendal blocks, which reach some of the pelvic area and the pelvic floor. It may be hard to find a doc who knows about pudendal nerve entrapment and I really question how legit the science is in that area. In my small opinion, these docs might be on the right track, but this area of the medical world is new and uncertain. If you would like to private e-mail me I will tell you where I have gone for pudendal nerve blocks. I also know a few good PTs thru out the country -- having seen them.

                              Best wishes,
                              ads

                              Originally posted by dbritts View Post
                              ads,

                              My urologist hired a bladder incontinence physical therapist. She thought everything needed to be strengthened not relaxed. She had me kegeling and measuring the strength. I was diagnosed in 1996 at Mayo with high-tone PFD and last year with the levator ani syndrome. I stuck with it over 6 months, but my pain levels increased tremendously. I would like to find someone new who is no further than 100 miles away, but I haven't found anyone yet. I will definitely check out the pudendal nerve entrapment. I'm not really familiar with that, but I will be careful. I'm also on permanent valium like Dr. Moldwin recommends in his book. I'm not sure it helps as much as it did in the beginning. What do you think? Thanks for the info about the pudendal nerve entrapment.

                              Debbie

                              Comment


                              • #30
                                Hi! The doctor that I was referring to that trained my pt was the one who wrothe the book Headache in the Pelvis. It was Dr. David Wise who trained my pt. Hope this helps. I was not sure how to do the little reference boxes so I just copied and pasted the section that was written about my previous post. Some day I am going to improve my computer skills.

                                Janice
                                --------------------------------------------------------------------------------

                                I am not sure we are all speaking about the same doctors. There is Dr. Jerome M. Weiss, MD http://www.jmweissmd.com/employeebios.htm who has a PT in his office who trains other PTs, then the one we were discussing was David Wise, Ph.D. who wrote the book titled Headache in the Pelvis http://www.pelvicpainhelp.com/physical_therapy.html

                                You could be speaking of either one but from your PTs description it sounded like the MD -- Dr. Weiss

                                Comment

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