Re: seeking a good diagnostic physician

From: Debbie (Tigger6040@aol.com)
Thu Nov 6 22:41:03 2003


Wow, that's quite an ordeal you're going through. My heart goes out to you.

You are in So. California which makes you relatively close to UCLA. Is there a pain management program there? I have a history of severe, complex chronic pain issues stemming from years of endometriosis, interstitial cystitis, adhesions and bowel motility disorders. Due to the chornic pelvic pain I have had a lot of trouble with pelvic floor dysfunction which is not something many doctors have a good understanding of. We live in Northern California. A few years ago I was referred to UCSF, to the pain center, for evaluation. I received a very thorough workup from the doctors there and they were able to make some key diagnoses my other docs missed. Among them were the pelvic floor dysfunction, left SI joint instability resulting in sacroiliitis, left piriformis muscle spasm and the list goes on. At the time we were living in Fresno in the Central Valley so I was sent home with recommendations to my PCP for treatment which included referral to a physical therapist that specialized in pelvic floor PT. Another recommendation was trigger point injections into the piriformis muscle. I'm just wondering if perhaps you might not get some benefit by an evaluation at a reputable pain management center.

Another suggestion I have is a consultation with Dr. Andrew Cook who is in Los Gatos, in the south San Francisco Bay Area. He is my doctor. He is a highly skilled diagnostician who specializes in endometriosis, pelvic pain, adhesion surgery. Dr. Cook is relentless in seeking answers to the complex problems of pelvic pain. He will keep at it with a patient until there is resolution, no matter how long it may take.

Your history with endometriosis really raises a red flag. I sincerely would not be a bit surprised if you were to find out you did have active endo that was causing at least some of your problems.

I wish you all the best.

--
Debbie

At Thu, 6 Nov 2003, mm wrote: > >Hi, > >I have suffered from unbearable pelvic, lower back and left hip pain for >thirteen years, subsequent to a traumatic childbirth in which I >sustained a fourth degree tear and a severe injury to the sacroiliac >joint. > >I have been through a number of bogus diagnoses and at least an equal >number of interventions to try to gain relief from pain and restore some >quality of life. The last year and a half has been invested in >prolotherapy injections, which seemed to be helping for awhile, but I >have had a severe relapse in the last few months. > >My symptoms include relentless muscle spasm of the pelvic floor, left >piriformis, left psoas and quadratus lumborum muscles; hypermobile left >SI joint, hypomobile right SI joint; unexplained vaginal bleeding; and >severe dysmotility issues. > >I have been to Mayo Clinic, where I was underwhelmed by their pelvic >pain expertise. I have consulted James Carter, M.D. in Mission Viejo, >who is active on OBGYN.net -- for a gynecologist he has good breadth of >knowledge of pelvic pain issues, but not a lot of depth of knowledge or >the cross-disciplinary experience to deal with a complex issue of the >sacral plexus. > >Can anyone suggest a diagnostic center of excellence or a physician, be >it a surgeon, an OB/GYN, a physiatrist, a gastroenterologist or some >speciality I haven't yet considered who has the ability and the interest >to discover what is going on with my body? My physical therapists and my >pain neurologist are suggesting that it's time for me to have a morphine >pump implanted, but I am loathe to take that step until I know exactly >what is wrong with me, a question that has never been satisfactorily >answered. > >I have had four MRI's, most recently a pelvic and lumbar. They always >come back completely clean except that this time Tarlov Cysts were noted >at S2-3 on both sides. The radiologist who read the report claims that >these cysts cannot be creating problems like what I am experiencing. I >have researched the cysts and there are people who believe these cysts >do indeed cause symptoms like mine, however I have never heard of anyone >with cysts as small as mine being an issue. Therefore, I continue to >seek input. > >I did have surgery for endometriosis many years ago. A laparoscopy >shortly after my symptoms began yielded no strong suggestion of a >recurrence, although I have always wondered whether there might be any >possibility of endometriosis or adhesions between the colon and the >psoas muscle on the left side, given the constant spasm of that muscle. > >I would appreciate any guidance anyone could offer. > >I live in southern California but would travel anywhere if I had reason >to believe there was someone who could help me. > >Thanks, > >-- >mm >


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