NeuroTalk Support Groups - Feckless neurologist

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Feckless neurologist (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/103109-feckless-neurologist.html)

I saw the worst pain doctor at UCLA. Unreal to me. Anyhow I have seen a couple of neurologist cause I have PN as well. I have heard the frustration of many who have issues with neuro's. Though the one I saw the most is not a very good comunicator and made a mistake on me before my rsd dx he did run every possible test and I did get my PN dx too. From what I found is if it is not an issue coming from the brain or spine they have no clue It seems to have to be concrete in a test result rather then them looking outside the box. I will say often these top hospitals I have been to are not the best. They give what I call drive through service. Your in and out in a flash. Sometimes just because a place is well known does not mean there the best it is hard to know. I encourage as I found my best doctor at a teaching hospital though obviously he was not a student and was the head of he pain dept but by calling the pain clinic there and explaining my story. Hang in there

Daniella, you hit the nail on the head describing Neurologist. Not thinking outside the box and drive through service.

I saw 4 or 5 and none of them really believe in TOS. IF it doesn't show on the test then you ain't got it. I believe it's their motto.

I do have a Neurologist now that only deals with MS. He did deal with both MS and RSD and quit the RSD. I never ask him why though. I really like him and he knows his MS but I think only dealing with one illness most likely helps him with being a good Neurologist.

I am definatly not a fan of Neurologist. I also spent a lot of time at the University Hospital in Denver and they are a big joke. I would never go to a learning hospital again. I believe even if they know what is going on with a person they still want to use you for a guiena pig instead of following any guidelines of what is used for illnesses. I saw about 7 different Drs. there for different medical illnesses and not one was worth going back to. If I wanted to be a guienna pig, I would volenteer for it.

Ada

I'm so sorry you've had such bad experiences with neurologists and pain mangement drs !

I've had both good and bad experiences with both types.

The dr who diagnosed my RSD/CRPS was a wonderful neurologist who was also treating my epilepsy. He had a lot of knowledge about it and knew almost right away what was going on-- after years of me being in pain. He treated the RSD/CRPS in my stomache with something relatively experimently (Botox), but I was willing to try it and it helped. However, after a while, we both moved and he is no longer my dr. My current neurologist is good, also has knowledge of RSD/CRPS, but prefers to not to treat it (although she did confirm the diagnosis). She wants to stick with treating my Epilepsy and other neuro issues and let a pain management specialist deal with the RSD/CRPS.

*** please know that I do not blame my current neurologist for not wanting to treat the CRPS/RSD--- she has her hands full with my epilepsy and genuinely wants me to recieve the best care for each issue, and I admire her for that ***

I am now on my 3rd pain management dr. The one I was seeing previously was at a large and "one of the most renowed medical centers" in California. However, that physician basically discounted both neurologists diagnosis, seemed completely unwilling to do Botox in the mannor my diagnosis neurologist did (hence, I had complications I'd never had before) nor took the suggestions of the residents or listen to anyone else's ideas. He was somewhat condescending to me, and didn't listen when I complained of side effects, flares, etc and was only avaliable one day a week. What I learned from that, is that ultimately, that teaching hospital and "renowned medical center" wasn't the best place for me. My current doctor, not at a teaching hospital, seems a lot more pro active, treats me with compassion and really seems to listen to me.

I am so sorry your having to go through all of this. It is so frustrating, but keep trying. There are good doctors out there-- but sometimes it seems to take forever to find them !

:) L2L

Quote:

Originally Posted by dshue (Post 566845)

Hey --

Thanks Sandy. Sorry for your similarly dismal experience.

But having just finished writing an accurate and disparaging missive to my 'doctor', I have to tell you, I feel so much better.

-- Dennis

Venting often does do the trick, huh. That's one of the reasons I love this board.

Interesting note - I spent the afternoon at St. Elizabeth's in Boston with my PM doc (Dr. Joseph Reyes, DO - the best of the best, IMHO), getting my 3rd Lidocaine infusion. The description I would use for him and his team is "compassionate." What strikes me after being with them and comparing their mannerisms to those of the docs i've have trouble with (I got got a 50% or less success rate), is the decency, caring, and concern that's conveyed to their patients by all of the staff. Those traits start at the top, with the management of the pain clinic.

Take care, and I wish you luck finding another doc. Sandy

When a doctor states, "I can't find any organic cause for the symptoms." He/she means they can find no physical cause to explain the symptoms. Organic = physical in the medical world. Just another bit of medical terminology trivia, idiopathic = they don't know what caused it. Example, Idiopathic Pulmonary Fibrosis. No family history or other factors as to why someone has the disease. :-)

Quote:

Originally Posted by SandyRI (Post 566829)

Dear Dennis,

I can SO relate to your frustration and anger.

Perhaps he trained with the neurologist I saw a few months ago in RI at my GP's insistance because I was suffering with such severe head pain he wasn't quite sure what to do with me? That neurologist charged me a $25 co-pay to hear basically the same thing - in his report he stated "I do not have an organic alternative diagnosis to explain her pain, and wonder how much of this is caused by depression." This is because at the time I saw him he didn't observe any autonomic changes that he expected to see with, as he puts it, "chronic RSD, such as sweating, hair loss, changes in skin turgor, temperature and color, osteopenia or edema."

BTW - what does "organic" mean?

I recall him being upset with me because I did not want to add Tegretol to my list of meds. I had tried Lyrica and Neurontin and hated them both. I already take Topamax for head pain. And furthermore, one of my brothers suffered from a seizure disorder when he was younger and was on Tegretol for a while - it made him lethargic and caused him to gain weight. No thank you.

I only saw this dr. because my GP wanted me to - he prescibes my opiods and I've needed them increased over the summer because my pain has been severe on a number of occasions. Before I agreed to the appt with the neurologist, I think I SHOULD have asked whether the doc had any experience with RSD, how many RSD patients he sees a year, etc. There are several other neurologists in his office -perhaps one of them would have been better qualified to treat me. Live and learn.

My GP has asked me AGAIN to try to find a neurologist because he needed to increase my meds 2 weeks ago. A RI FB page had a suggestion for a RI neurologist, so I called his office. I asked the receptionist if the doc had experience with RSD and how many patients he took care of, etc. I also asked my GP if he had heard anything negative, and he hadn't. That's a lot more due diligence than I perfomed the first time around.

Not all doctors are alike. My GP wants me to see neurologists, that's the only reason I'm persisting. But the bulk of my care has been provided by a PM doc in Boston at ST. Eliz that I really like a lot (7 SGB, 1 LB, 2 lidocain infusions). He's board certified in both pain management and anesthiology, and is a Doctor of Osteopathy.

I think you may find that many people on this board use PM docs for their care.

Good luck, and never, never give up. Sorry you had such a *edit* day.

Sandy

Quote:

Originally Posted by fmichael (Post 566882)

Dennis -

What you went through sounds hideous. And of course the guy was right about chronic CRPS being in your head, just not in the way that he meant.

See, e.g., "Contralateral thalamic perfusion in patients with reflex sympathetic dystrophy syndrome," Fukumoto M, et al, Lancet 1999 Nov 20; 354 (9192):1790-1 (PET scans showed substantial variation in thalamic perfusion of the side contralateral to the painful limb, with variations are related to time from the onset of symptoms, suggesting that the thalamus undergoes adaptive changes in the course of this neurological disorder) copy attached; "Chronic Pain with Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assesed by Single Photon Emission Computed Tomography," Fukui S, et al, Regional Anesthesia and Pain Medicine, Vol 27, No 2 (March–April), 2002: 211–213 (following Fukumoto, thalamus of 50 y.o. woman with chronic CRPS was measured before and after ECT treatments, which resulted in pain pain being reduced to the point that VAS levels of post-ECT pain severity were rated 1-2 and rCBF in the thalamus was increased significantly increased after ECT, suggesting that rCBF change may be related to the analgesic efficacy of ECT) full text at http://www.rsds.org/2/library/articl..._Yoshimura.pdf ; "The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions," Geha PY, et al [Apkarian AV], Neuron 2008; 60: 570-581 (finding, among other things, a significant reduction in the corticol thickness of the anterior insula, one of the key receptors of signals in the cortext from the thalamus, and linked with emotional regulation) full text at http://www.rsds.org/2/library/articl...aliki_etal.pdf

But I suppose it's too much to expect that the guy would have been caught up on his reading to the point that he would be familiar with a decade old article in The Lancet.

That said, a referral from a great pain psychologist to an MBSR instructor (Mindfulness Based Stress Reduction), a program with a substantial element of meditation that has been training teachers across the country out of the Univ. of Mass. for the last 30 years, http://www.umassmed.edu/Content.aspx?id=41252 has been the single best thing that's happened to me since I got this thing. It was there I first learned that while pain is all too often pain unavoidable, struggling against it just compounds - and in fact is - the suffering we experience. Plus I've made some really great friends in that community.

And of course not all neurologists are terrible, look at Robert J. Schwartzman or Anne Louise Oaklander or even my own neurologist, who left the faculty at UCLA where he was a full professor when, I was advised by someone else, UCLA wasn't interested in funding a rehabilitative program.

And for what it's worth, UCLA's reputation around town for treating chronic pain is dismal. While they may be the go to guys for stroke or brain cancers, they persist in being in the dark ages when it comes to pain. It must not generate enough research grants.

So to close with an apt and infamous bit of Dog Latin, illegitimi non carborundum.

Mike

Hey --

As always, thanks for sharing the vast reservoir of knowledge.

Another thing you hipped me to, Dr. Steven Richeimer at USC, has been pretty good so far. Through him I've an appointment set with a pain psychologist next week. Seeing as you're sold on this MBSR program, I'll be asking if there is anyone around these parts to see.

Of course, I already knew long ago how dreadful UCLA was, both neurology and their pain center. Even the neurologist I saw last year there, a pretty well known guy who had left UCLA for the dollars of cash paying patients, was a let down. My primary doctor kind of threw out to me the name of their specialist who I had yet to see. I really wasn't all that interested, and I got about what I expected.

So while the rep around town is pretty well known, I don't think it can be emphasized enough to stay away Westwood.

-- Dennis

Dennis -

I suspect we're not the only people in this little group who see Dr. Richeimer. And I can recommend some great MBSR instructors, depending on what area is convenient for you.

The sad truth though is that I still "believe" in the depth of UCLA's Neurology Dept. on more traditional issues and am in fact working through my neurologist to see someone on a matter that doesn't appear to really have anything to do with RSD but appeared ironically enough following a funky MRI that came back a few weeks ago when I wanted to see if my anterior insula could be imaged on a T3 machine. Nothing horrible, just worrisome, and the alternative to UCLA is a $600/hour neurologist at Cedars with whom I will consult in the interim and who doesn't accept insurance.

So it goes.

Mike

Dennis
even though the doc may have brushed you off with a comment about meditation, please take fmichael's thoughts on this to heart. He helped me a lot years ago with his recommendations. Pain meds have not helped me, but the book Mike recommended to me on meditation by Shinzen Young did. It taught me to not be afraid of the pain, to not be tense, to be able to relax during the worst spasms and what ever RSD threw at me. Mike has really studied this and knows what he is talking about... having been to Shinzen's retreats. I am a lousy meditator. And, it still helps me more than any medication has.
Jules

Quote:

Originally Posted by fmichael (Post 567344)

Hey --

I concur on the depth idea with respect to UCLA. There is indeed quality with the major stuff. So much so that while I mentioned in my last post I wrote a rather incisive, eviscerating letter, which I shaped up a little today and was preparing to send off to Westwood, I paused.

I realized I may be setting myself up for a Larry David-ish moment if I had a stroke, inevitably getting a neurologist familar with my beatdown missive. So I think I may wimp out.

Hope the funky MRI issue resolves itself positively. I'm also seeing a Cedars neurologist now on his own. Dr. Luc Jasmin. A French-Canadian guy from Montreal. I'm a fan.

-- Dennis

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: