If I may, Dear Snowy -

This is all my pleasure. You are so lucky to have gotten a Dx as soon as you did. It's an amazing feeling to connect with someone who will not have to have a substantial part of her life defined by this condition. That said, I was suffiently clueless to not focus on the fact that I was asking you to do all this stuff right away, while you were in finals. Yikes!!!

But here's the deal, unless you can pull the rabbit out of the hat - which is where I'm trying to be of assistance - it may well be five years before you get your pain under control, and by then it may have taken a significant chunk of that young lady you once understood as yourself.

You need to find a pain management specialist and start treatment within a month. That person will be able to look after both your short and long term need. Short, meaning oral medications until you can get started on you blocks, long term, meaning getting you out of the swamp, as much as I have enjoyed making your acquaintance.

That said, I understand more than you would ever want to know, the perils of being identified as a "drug seeker," simply because of your age. Accordingly, I am not going to suggest any analgesics for you to discuss with your neurologist.

Your play is simple and direct: through a moderated RSD support group you were referred to the articles I have provided, specifically:

1. Efficacy of stellate ganglion blockade for the management of type 1 complex regional pain syndrome, Ackerman WE, Zhang JM, Southern Med J. 2006 Oct; 99(10): 1084-8, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...lion_block.pdf

2. Complex regional pain syndrome type I: efficacy of stellate ganglion blockade, Yucel I, Demiraran Y, Ozturan K, Degirmenci E, J. Orthop Traumatol. 2009 Dec;10(4):179-83. Epub 2009 Nov 4, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...Article_71.pdf AND

3. A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report, Adam Everett, Brian Mclean, Anthony Plunkett, and Chester Buckenmaier, Pain Medicine, 2009 Sep;10(6):1136-9. Epub 2009 Sep 9, FULL ONLINE TEXT @ http://www.rsds.org/2/library/articl...n_Plunkett.pdf

You have read the articles and they are compelling. Read them, print them out, and get them to the neurologist at your first opportunity, hopefully today's appointment, time permitting. You understand that the clock is ticking and you are not going to lose this opportunity, an account of which you need to see a good pain management specialist to initiate a series of lumbar sympathetic blocks with concurrent PT.

And by the way, that's the tact you take with the pain management specialist once you get to the pain specialist, your emphasis is getting treatment. You can describe at length how bad the pain is, but don't ask the specialist at your first consultation whether s/he can prescribe anything stronger than Vicodin. Of course, if the pain doc. affirmatively tells you that you should consider something else, that's great. But please keep this in mind, this may be the first time in your life you are being called on to play a "long game," all at a time when your need for immediate relief has never been greater! (Think about it like the saunas I used to take with my grandfather, running out of a room that was probably over 180 degrees and then - depending on the season - either sprinting naked down a dock and diving into the lake, breaking the evening ice of early November, or just going outside - equally attired - and rolling in the snow at 20 below. It’s supposed to build character.)

Now, you mention going online and finding physicians whose websites indicated they were no longer accepting new patients. Of course I don't know what city you are in, but going onto the ABPM site, i did an unrestricted search for Madison WI and came up with two names. The first was for an older woman who must have been one of the practicing pain physicians who were "grandfathered" into ABPM certification, because she makes no reference to completing any formal pain fellowship and her approach, based on my quick review of her website, was on natural this and that, diet, et cetera. (All the while, thinking of your situation, I hear "tick, tock, tic, tock.")

But the other listing was a find:

Dr Mark E Schroeder, MD
Dept of Anesthesiology
B 6319
600 Highland Ave
Madison, WI 53792

Office Fax: (608)263-0575
Office Phone: (608)263-8123
Office E-Mail: meschro2@wisc.edu

Specialty of Origin: Anesthesiology

I Googled "Dept. of Anesthesiology University of Wisconsin Madison," it's homepage popped up, I clicked on faculty, and look what I got:

Mark E. Schroeder MD
Associate Professor
Special Interest: Regional Anesthesia

http://www.anesthesia.wisc.edu/Faculty.php

"Special Interest: Regional Anesthesia," otherwise referred to for our purposes as the magic rabbit. (Just like our friends at Walter Reed in Article No. 3, above.) And when I ran his name on PubMed - the link is at the far upper right of every NT page – I got four articles he wrote or co-wrote, including one on which he was the principle author, but which I was unable to open, euphemistically titled “Tubing misload allows free flow event with smart intravenous infusion pump.” (A free-flow of a pump containing a 30 day morphine supply will kill most people; a friend of mine got lucky and was only in a coma for a few months.) This is the sort of serious, up-to-date sort of doctor you need to see.

Which brings me to my last point, which I should have mentioned earlier: Departments of Anesthesiology or Pain Medicine in medical schools are typically a good place to look. (Don’t ask about Seattle.) They are staffed by sharp people and typically accept any insurance coverage. Just one word of caution, ALWAYS get an appointment specifically with a member of the faculty who you have identified one way or another, or to whom you have been referred. The converse applies as well: unless there is no other choice, NEVER get a general clinic appointment, you may wind up being seen just by a resident or at best a clinical fellow – who goes out in the hallway and confers with someone you will never meet – whereupon s/he returns and says sorry, but there is nothing they can do for you. Because my physician’s lengthy letter of referral never made it through campus mail, I had an experience on that order at Johns Hopkins in 2006. No fun.

And so to return to what you tell your neurologist, you do in fact need to tell the neurologist something, because a letter of referal is expected and/or appreciated, if not to make the appointment, then to be presented at the appointment itself.

I hope this is helpful. And good luck with the exams, I remember them fondly.

Mike

I sound like a broken record now...but thank you- again, and again, and again! I feel like I should be paying you for all you've been doing to help! But seeing as I can't say it enough, I will hold my sappy thank you's for now, and every so often, you'll get hit with a barrage of them, so be forewarned...deal? lol

Anyway, back to business...I see that you're online, and I have a few more questions for you, just some kinks in the plan that could throw things off at my appt. I sent you a PM, but i'm not sure how that works (like if you are alerted right away, etc), or if there is a chat option... b/c I gotta figure these few things out before I discuss the pain specialist and "plan of action" changes w/my neurologist tomorrow. Just want to be prepared as to what to say if he throws his ideas of "options" that don't sound right, but aren't sounding wrong per se either... (for example, he has mentioned nerve blocks in the past, but as a future thing, but hasn't said who would do them, and has never mentioned me seeing a pain management specialist as part of my care team, which worries me...

I'm sorry to keep on hitting you with questions, but you are so darn smart, I'd be a fool not to! I can't tell you how much you have raised my spirits and turned this whole thing around for me. I'm so grateful to have been able to connect with you.. I was so scared when I was dx that I was going to be alone in this, and knowing now that there is someone out there who understands what I'm going through, and is willing to listen to my whining and cries of helplessness, is both a relief and the best gift I could have ever hoped for. Okay, so there's the lack of sleep, sappy-ness talking, or should I say, the rsd talking. So maybe I don't have to apologize for that sort of thing anymore..? lol always looking for the silver linings!