Hello, all --
Been awhile since I posted, though I try to keep up with my reading.
After some hemming and hawing, I finally made an appt. with Marilyn Freedman. It is, by far, the smartest decision I've made since this all started. She and her associate (whose name I forget) started by assembling a VERY detailed history of my symptoms, etc. Then came the physical evaluation. They dug into muscles I didn't know I had. I'd been to two PTs before, both of whom are reputed to be 'specialists' in IC/CPPS. Neither of them came close to finding and hitting the points that we discovered today.
As with the SP, Marilyn doesn't propose a quick fix. It's going to require a lot of effort on my part, which will be much easier now that I have someone to guide me properly. But she's the first medical professional I've dealt with since all this started who is hopeful and optimistic.
If your're ANYWHERE within driving distance of New York City, give them a call. I'm just a tad under two hours by car, but it was well worth the trip.
Marilyn Freedman: a godsend!
Marilyn Freedman: a godsend!
Age: 35 | Onset Age: 31 | Symptoms: Occasional bouts of frequency, sensation of bladder not completely emptying, tightness in groin and pelvis (ever since cystoscopy w/hydrodistention); urgency seems to have subsided | Helped By: PT, relaxation, Theracane | Worsened By: Stress, carbonated beverages
Re: Marilyn Freedman: a godsend!
hey bud. . I have been seen Marilyn on several occasions until I found a local pt. . I am I NJ . . . . . she is the best I agree. . . . . gary
garyf
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Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
Re: Marilyn Freedman: a godsend!
Gary-
wondering who you found in NJ who does pelvic floor work?
dave
wondering who you found in NJ who does pelvic floor work?
dave
Re: Marilyn Freedman: a godsend!
hey dave her name is sharon arditti and she works out of jfk hosp in edison nj...in the outpatient physical therapy dept...she is really good..hope this helps...gary
garyf
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Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
Re: Marilyn Freedman: a godsend!
Hey Gary, I'm in northern jersey, seeing a PT up here but not getting great results. Are you getting improvement with Sharon? A trip to Edison is not bad for me if it's worth the trip.
Age:33 | Onset Age: 21 | Symptoms: Penile/rectal/testicular pain, urgency/frequency, constipation | Helped By: Relaxation, PT, eating healthy, just started some acupuncture-seems to be helping | Worsened By: stress/anxiety, poor diet
Re: Marilyn Freedman: a godsend!
kpbos sharon did help me a lot so if your present pt isn't doing it for you it may be worth the trip
garyf
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Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
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robertpagen
- Old Hand
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Re: Marilyn Freedman: a godsend!
Marilyn was a pleasant lady, seemed sincere. My personal result with her was that I felt much worse and that she was so expensive that there was no way I could maintain ongoing treatment. That was in 2006.
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Re: Marilyn Freedman: a godsend!
For how long were you in treatment with her? I'm sure you're aware of how nasty things can get with any PT for the first several sessions. Just a bit surprised, as this is the first negative report I've heard about her.robertpagen wrote:Marilyn was a pleasant lady, seemed sincere. My personal result with her was that I felt much worse and that she was so expensive that there was no way I could maintain ongoing treatment. That was in 2006.
I am not a physician. This is not medical advice. Consult your doctor!
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.