NeuroTalk Support Groups - Feckless neurologist

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well I would tell him to....

Quote:

Originally Posted by dshue (Post 566802)

I just have to vent a bit, having returned from a visit to a neurologist at UCLA (I won't comment on specific names, but I simply must condemn the institution as ridiculously unsatisfying).

Being based in LA, I've had consultations at both Hopkins and UCSF (the better place in my experience), returning home to UCLA to continue any treatments.

Please tell me if I'm wrong, but there isn't any doctor, not one, based at UCLA in either their neurolgy department or their pain clinic (and I'm not including doctors in private practice, like Dr. Prager, who simply have office space at UCLA) who are remotely competent.

After a year and a half of brutal pain, an at times basic state of near debilitation, and a sheaf of suggestions from UCSF, the massively insecure, most egregious UCLA neurologist, today, as I was approaching being curled in a ball of pain, only methadone getting me to the office, stated that he disgrees with the reports of his esteemed colleagues, and started to intimate perhaps there's a psychological component to my dilemma, that maybe, say, meditation would be helpful in alleviating that which may be, you know, simply residing in my head. Unbelievable.

Forget that my medical records were lost by this office, twice, with me then having to hand deliver a set of copies in the middle of the day; that it took weeks to simply set an appointment after an insurance 'approval' (and this being my home base as it were). All to find, what was I thinking? The clarity, it was overwhelming - all this pain is simply in my head. Thank you so much doctor.

All I can say is that with a $10 co-pay, I certainly got what I paid for at UCLA.

-- Dennis

Well Dennis, I would tell him bugger off .... off and to "leave on the pony he rode in on." He doesnt deserve a horse.lol!

I am so sorry this happened to you. Shocking. Absolutely shocking. I would copy every article and there are hundreds that open stressing rsd is not a psychological disorder it causes psychological disorders. I would highlight everyone of these and have them delivered by certifed mail, requiring a signiture. I would then turn dr. kirkpartrick from tampa on him, he loves to go after doctors llike this. Send him a note explaining what has happened etc. and provide the doctors name etc. dr. kirkpatrick with put him on his mailing(emailing list- I think if you ask him.) Im so sorry this happened to you sincerely cz P.S. I love the word " Feckless" I had to look up the meaning !- thanks, its a good word

Quote:

Originally Posted by hope4thebest (Post 567757)

Hi Dennis,
Yes, the irony would be *Larry David-ish* if your letter circulated amongst the doctors, and there you were with an unrelated medical need! Write the letter anyway, though, and keep it just to fuel your search for competent RSD care.

Better yet, if at all possible, can you pay another $10 co-pay and go back to him with a binder in hand full of supporting documentation, articles, research reports ( print out some or all of fmichael's links and include them!)
to educate him that your condition cannot be simply dismissed with his inadequate diagnosis (diplomatically, of course..)

His saving grace is that he did suggest meditation, but he went no further than that.. By the way, I just completed a MBSR class, that has helped me immeasurably and will continue to help in years to come!!

I am trying to curtail any high expectations, but I FINALLY have an appointment with a neurologist at UCSF Medical Center at Mount Zion Pain Management Center at the end of the month. (Dr. Rowbotham)

(The only neurologist I have seen in the past told me that "CRPS doesn't spread, that's why it's called regional......." duh...
I never returned for my follow-up appointment..)

I am *reluctantly* allowing myself to hope for miracles with Dr. Rowbotham's findings, or maybe just some new and innovative ingredients in any future lumbar blocks...or a suggested lidocain infusion...or bier block to the foot..something, anything..

My previous and 'assigned' pain management doc wasn't even an anesthesiolgist, and I fear that I have lost valuable time.. such as 1 to 2 years!!!)
I researched the net and found Dr. Rowbotham's name on my own..

All this said, Dennis, I hope you find a doctor-partner who you can respect and who will partake in your treatment with respect for you as well..sometimes it seems that searching for the ideal doctor is like Don Quixote chasing windmills..

I hope your apointment with Dr. Luc Jasmin brings you new beginnings and intelligent insight...... (I was born in Montreal, too!!)

I won't give up...has anyone sought out a shaman??
Hope4thebest :grouphug:

Hey --

I saw Dr. Rowbotham back in March. The neurologist I mentioned, Dr. Luc Jasmin, was based at UCSF and worked closely with Rowbotham.

He's very good, definitely worth a visit, whether you're in San Fransico or have to travel for the appointment.

The most important thing I could say is that he 'gets it' with respect to RSD and other pain issues. You'll find it easy to connect with him on an intellectual level, and there's a humanistic element as well. I was impressed.

He'll provide an agressive game plan, and in my case, he analyzed my records and freely admitted the complexity of my specific issues, yet sort of put himself out there with respect to a diagnosis. There wasn't the fear, the insecurity that I've found in many of the doctors I've visited (as I'm sure is similar to your experience). He was open to suggestion with me.

If you haven't already, read his published papers before you go (sorry, I don't have the info for the links at hand). Guy knows his stuff.

Good luck.

-- Dennis

Dennis!
Thanks for the endorsement and the preview of what I can expect at UCSF with Dr. Rowbotham ! The combination of knowledge/expertise and a benevolent attitude are qualities I wish for everyone in their doctor!
I assume you weren't able to continue with him because you live in Southern Cal? Maybe Dr. Jasmin and Rowbotham can collaborate since you already have a history with the latter!!

It really is upsetting that the UCLA doc dismissed your pain so simply. If the doc had said that to another patient who doesn't have the ability to advocate for him/herself, or the knowledge that you have, that person would have left thinking that was the final diagnosis, and gone home to wallow in pain indefinitely..

I am certain so many people regard the doctor's (feckless) word as doctrine, and leave, helpless...Is there such a thing as medical advocates, somewhat like a watch dog social worker to look out for people who don't know how to navigate the medical system? (especially frail seniors) That is something I would really like to do!

I was the 'one' for my father when he had metastatic cancer, and now for my mother who is 97. I fought like a she-wolf when my father was given shoddy treatment, and will do the same for my mother, if need be..
OK, I'd better calm myself.....:eek:

I hope your treatment with Dr. jasmin brings you relief and optimism!!
Hope4thebest

Quote:

Originally Posted by hope4thebest (Post 568118)

Dennis!

I am certain so many people regard the doctor's (feckless) word as doctrine, and leave, helpless...Is there such a thing as medical advocates, somewhat like a watch dog social worker to look out for people who don't know how to navigate the medical system? (especially frail seniors) That is something I would really like to do!

I was the 'one' for my father when he had metastatic cancer, and now for my mother who is 97. I fought like a she-wolf when my father was given shoddy treatment, and will do the same for my mother, if need be..
OK, I'd better calm myself.....:eek:

I hope your treatment with Dr. jasmin brings you relief and optimism!!
Hope4thebest

There is something all of us with "resources" can do - report these guys to the state medical board!

If its clearly appropriate and if you can document the doctor's reporting deficiencies, then I think it should be done to protect others from being hurt by these shoddy practictioners. Every state has a team of professionals that investigates complaints against doctors.

I did it with a anethesiologist in RI. His written report was a MESS, as if he copied and pasted parts of another patient's boiler plate into mine. He talked about reviewing "systems" of my body, such as the urinogenital (sp?), that we never, ever discussed. And he had the gall to provide an atrocious list of "provisional diagnosis," none of them RSD, that were a joke! He hadn't discussed any of the related symptoms, and under the cirsumstances, had no right to diagnose me, even provisionally, with any of them. Needless to say, WC was in heaven with his report!! At the end of my 2nd and last visist with him, he handed me a business card for the RSD Support Group of RI and encouraged me to join it. He then wrote in his report that he thought I did NOT have RSD. I later discover that he did the same thing to someone else!!

Those of us that have the ability to report instances such as these to the proper authorities should do so. If anything, just to prevent these practictioners from doing the same thing again and again and again!!

Take care, XOXOX Sandy