SnowWhyte -

Where you were injured only eight weeks ago, it is vital that you immediately get started on an aggressive series of lumbar sympathetic blocks, combined with PT on the days after the block when you have maximum pain relief. But the window on starting this is really short, with the best evidence suggesting that the best chance of blocks making a difference is when you start them within three months on the onset of symptoms.

Now, because you've got it in the foot (as do I) the treatment would be a lumbar sympathetic block (LSB), performed under fluoroscopy. However, the same principles apply ;to treating CRPS in the arms, where the "stellate ganglion block" (SGB) is the most frequently applied. And with respect to the SGB research has shown the blocks are effective, if initiated roughly within 22 weeks on the onset of symptoms. See, e.g. 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

Abstract
INTRODUCTION: The purpose of this study was to examine the efficacy of stellate ganglion blockade (SGB) in patients with complex regional pain syndromes (CRPS I) of their hands.

METHODS: After IRB approval and patient informed consent, 25 subjects, with a clinical diagnosis of CRPS I of one hand as defined by the International Association for the Study of Pain (IASP) criteria, had three SGB's performed at weekly intervals. Laser Doppler fluxmetric hand perfusion studies were performed on the normal and CRPS I hands pre- and post-SGB therapy. No patient was included in this study if they used tobacco products or any medication or substance that could affect sympathetic function. The appropriate parametric and nonparametric data analyses were performed and a p value <0.05 was used to reject the null hypothesis.

RESULTS: Symptom onset of CRPS I until the initiation of SGB therapy ranged between 3 to 34 weeks. Following the SGB series, patient pain relief was as follows: group I, 10/25 (40%) had complete symptom relief; group II, 9/25 (36%) had partial relief and group III, 6/25 (24%) had no relief. The duration of symptoms until SGB therapy was: group I, 4.6 +/- 1.8 weeks, group II, 11.9 +/- 1.6 weeks and group III, 35.8 +/- 27 weeks. Compared with the normal control hand, the skin perfusion in the CRPS I affected hand was greater in group I and decreased in groups II and III.

DISCUSSION: The results of our study demonstrate that an inverse relationship exists between hand perfusion and the duration of symptoms of CRPS I. On the other hand, a positive correlation exists between SGB efficacy and how soon SGB therapy is initiated. A duration of symptoms greater than 16 weeks before the initial SGB and/or a decrease in skin perfusion of 22% between the normal and affected hands adversely affects the efficacy of SGB therapy.

PMID: 17100029 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17100029


See, also, 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

Abstract
BACKGROUND: This study was performed to evaluate the treatment of complex regional pain syndrome (CRPS) type I with stellate ganglion blockade.

MATERIALS AND METHODS: We performed three blockades at weekly intervals in 22 patients with CRPS type I in one hand. The patients were divided into two groups depending on the time between symptom onset and treatment initiation. Group 1and 2 patients had short and long symptom-onset-to-treatment intervals, respectively. Pain intensity, using a visual analog score (VAS), and range of motion (ROM) for the wrist joint were assessed before and 2 weeks after treatment and were compared using nonparametric statistical analysis.

RESULTS: Treatment produced a statistically significant difference in wrist ROM for all patients (P < 0.001). VAS values showed an overall decrease from 8 +/- 1 to 1 +/- 1 following treatment, and there was a significant difference in VAS value between groups 1 and 2 (P < 0.05).

CONCLUSIONS: We concluded that stellate ganglion blockade successfully decreased VAS and increased ROM of wrist joints in patients with CRPS type I. Further, the duration between symptom onset and therapy initiation was a major factor affecting blockade success.

PMID: 19888550 [PubMed - indexed for MEDLINE]PMCID: PMC2784060

http://www.ncbi.nlm.nih.gov/pubmed/19888550

Please note: Before these studies came out (and to an extent afterwards) blocks have gotten a lot of bad press as ineffectual for CRPS. But that was only because none of the studies has focused on the length of any patient’s illness. Not coincidently, over the last 5 years or so there has been an explosion of basic science, demonstrating that CRPS is propagated/maintained by very different processes just over the first 2 -3 years of the disease. (References available on request.)

Without putting too fine appoint on it, if your doctors are not offering you a series of LSBs with PT at this stage of your illness, it appears (at least at first blush) that you are not being well served by your current treating physicians.

Your best bet for finding a good pain specialist in your area may be someone who is board certified by the American Board of Pain Medicine, which accredits almost all pain fellowships in the U.S. To be board certified, a physician must complete such a one-year fellowship (after an appropriate residency) and then pass an 8-hour exam. Here’s a search engine that may assist you in locating someone in your area: http://www.association-office.com/ab...dir/search.cfm There is one caveat, however. The search engine will show the doctor’s “underlying specialty of origin.” I would strongly urge you to avoid physical medicine/physiatry specialists for the treatment of CRPS. They may be great for lower back pain, but it just so happens that this is one of the most complicated problems in neurology today. My first choice would therefore be a pain specialist with training in neurology, with anesthesiology and psychiatry a close second.

And there are other therapies that have been shown to be effective only in the early stage of the disease, “mirror box therapy” for one. But it’s just past 3:30 am in LA and I’ve already bombarded you with enough.

Again, I’m happy to refer you to the appropriate articles on the RSDSA site, which suggest the rapidly changing nature of the disease in the first few years of affliction. Why it took this long for researchers to begin to consider duration of disease as a variable in looking at the effectiveness of not just blocks, but any treatment, is beyond me. But it is thus. Go back six years in the literature, and disease duration isn’t even considered!

Good luck. I realize that I haven’t addressed any of your questions on anesthesia, but in even the medium term, this is far more important.

Mike

First, thank you for getting back to me right away, I was amazed, and grateful, and relieved to see that you had! Thank you so much for staying up to do that! I live in WI, so if it was 3:30 when you posted there, it was 5:30 (?) here? (I think my post was around 3...idk, I've been up all night, can't see previous thread at the moment, and the combo of Neurontin and pain is doing a number on my brain at the moment) Anyway I'm up anyway, I didn't feel "bombarded" at all- in fact, I'm in nursing school (for now), and have planned on med school my entire life. And w/a lot of family members also in science fields I'm used to being bombarded with "science talk". This, however, is new to all of us, and even with the little I know thus far, I'm actually the expert of the family for once. (silver lining, I guess)

So you brought up some really important points that I've been thinking (and worrying) about a lot the last few days. First of all, even though I trust my neurologists (2 in the practice), I am concerned about the course of treatment right now. Now, they have addressed, and stressed the importance of "catching" it within the three month period, which we did. *My bunionectomy on L foot which was determined to be the cause, was done mid October, and when I was still in a ton of pain (more than my podiatric surgeon was comfortable with), he assessed it at 6week post-op visit and after seeing my foot and the current (clean) xrays, thought it could be rsd/crps and sent me for consult w/neurologist (and an mri, just to make sure it wasn't pin mis-placement, which it wasn't). By the end of week 7, I had seen the neurologist had an EMG, and been back to neuro again and rsd/crps was confirmed.

At this point they started me on Topamax and Neurontin, with the instructions to up the doses every week for the first four weeks, and to come back in 1-2 months. (which seemed awfully long to me) b/c by the time i was dx, it had already been nearly 2 mos- so they wanted me to come back at 4mos?! And when I asked about PT- (because my surgeon was also concerned about geting function in my foot back) neuro said that I had to wait until the meds were working and pain was under control, or else it could risk making the crps worse, or cause it to spread...which it's already doing, mind you...up my left leg, and even when they were doing the EMG the dr noticed the color starting to change in my right leg, and sure enough, a week and a half later and the pain has now spread over to the right leg too.

I'm scared b/c I'm running out of time before the three month time window closes... my current neuro has mentioned nerve blocks mult. times, but always as something to be done in the future. I didn't realize that was something that needed to be done ASAP.

Just yesterday I was talking to my family about trying to hunt down the best dr in the field for a second opinion on this... because it's so rare, and my time is so limited, obviously going to just anybody, even if they're "good" isn't going to cut it. I just don't know how to find the best, I appreciate your tips....cuz that was my first hurdle- I didn't know what the best way to narrow it down was, by specialty I mean...be it by Neuro, or pain specialist, etc. AND to make matters more troublesome, this is something that more than anything I've ever experienced, if one isn't careful, even the best and most appropriate treatments can go terribly wrong if done incorrectly, or not at the right time for the right person...(if that makes sense). So after using your tips to narrow down the options, how does one know who to choose? Of course I'd like to see someone close by where I live, but at the same time, if someone better is accros the country, then I'll go- I'm 23, my whole life is ahead of me, and will be in their hands... And even though I'm completely broke, to the point that I will lose my apt soon b/c I can't get work being disabled, I will still do whatever it takes to make sure I get seen by the best, my future depends on it- and this is one case where I think my family would maybe help me out, and chip in for a plane ticket if need be (fingers crossed).

It's all just starting to break my heart..I used to be a gymnast and competitive cheerleader (in high school anyway), and then an avid runner, and horseback rider, and I desperately want that back...I want my life back. There has to be a way- there simply has to be a way.

Thanks again- for the enormous help and support, and as always, for listening to me vent...it's more helpfull than any meds I've ever had!

(and p.s. I apologize if I'm "jumpy" for lack of a better word, in my posts lately... these meds make me, as I call it, just plain "stupid" lately...they say it will fade. Just bare with me- thanks guys!!)

Dear Snow/Ms. Whyte -

Fear not, you don't have to fly across the country to find a pain specialist who can hook you up to a series of blocks right away and coordinate them with PT. And besides, you don't have the luxury of waiting two months for an appointment. Giving a LSB under fluoroscopy is as "bread and butter" a procedure as they come for pain management specialists, and while I've heard of some anesthesiologists without pain management training screwing things up, I am personally unaware of that being done by an ABPM certified specialist.

There are a few things you can do with names that the ABPM search engine generates. You could run them through PubMed to see if they have written anything, you can ask what hospitals they are affiliated with and whether that is the sole place the doctor works, has offices, etc. Unless they are part of a large and well respected group practice (say, something affiliated with a premier dept. of a medical school) I would be wary of guys who spend a day here and a day there through the week: it typically implies that they are serving in a contract capacity and are regarded by the hospitals they serve as more or less fungible. Then too, you can post names of candidates here in order to receive unfiltered comments on the physicians for whatever they are worth: be careful of strong reviews from someone who may have joined the forum just to make the pitch. Finally, it's important that they take insurance, both for the obvious reason, and also because (at least in my experience) those who don't are typically more interested in making money than making you better.

Quite honestly, I'm pretty sure there are guys out there who are secretly relieved when blocks no longer work on a patient and they can get on to what they regard as serious business: implanting pumps and spinal cord stimulators. Effective Jan 1 of this year [I think], doctors were required to disclose certain "emoluments" they received from Big Pharma and the medical device manufacturers, but what was paid prior to the new law taking effect is all water over the dam.

And just in case someone wants to suggest you are being alarmist (when actually it’s managed care pushing patients through the most conservative treatments first, and not given the go-ahead for something more invasive until it’s too late to be of any real use) check out the following to see how the other half lives, not that they haven’t earned the right: 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:

Walter Reed Army Medical Center-Army Regional Anesthesia & Pain Medicine, Washington, DC 20307, USA.

Abstract
OBJECTIVE: To successfully treat a patient with complex regional pain syndrome, refractory to standard therapy, to enable a rapid and full return to professional duties.

SETTING: This case report describes the rapid resolution of an unusual presentation of complex regional pain syndrome type I after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion. The patient was initially diagnosed with complex regional pain syndrome (CRPS) I of the right lower extremity following an ankle inversion injury. Oral medication with naproxen and gabapentin, as well as desensitization therapy, failed to provide any relief of her symptoms. She was referred to the interventional pain management clinic. A lumbar sympathetic block failed to provide any relief. The patient was diagnosed with CRPS I and was admitted for treatment with a continuous peripheral nerve block and parenteral ketamine.

CONCLUSION: This case suggests therapeutic benefit from aggressive treatment of both the peripheral and central components of CRPS.

PMID: 19744217 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19744217

And for articles discussing how a couple of other therapies – “mirror box treatments” and continuous 5-day sub-anesthetic ketamine infusions - also work only relatively early in the disease, see, Body Perception Disturbance (BPD) in CRPS, Lewis J, McCabe CS, Practical Pain Management 2010 Apr:60-66, at 63 and n. 38, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._April2010.pdf, citing, A controlled pilot study of the utility of mirror visual feedback in the treatment of complex regional pain syndrome (type 1), McCabe CS, Haigh RC, Ring EFJ, Halligan PW, Wall PD, Blake DR, Rheumatology 2003;42:97-101, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Ring_etal.pdf, and, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isomeric S(+)-Ketamine in Refractory CRPS Patients, Ralph-Thomas Kiefer, Peter Rohr, Annette Ploppa, Boris Nohé, Hans-Jürgen Dieterich, John Grothusen, Karl-Heinz Altemeyer, Klaus Unertl, and Robert J. Schwartzman, Pain Med. 2008;9(1):44-54, at 51, ONLINE TEXT @ http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf

Finally, I encourage you to spare no effort in pursuing all potentially available cures within the next few months (including, if need be, 10 day out-patient ketamine infusions if the blocks alone do not put you into full remission. Indeed, there is strong evidence that neurocognitive impairments may otherwise kick in for people who have CRPS at the one year mark: such as the ability if this former federal court litigator to keep his medical appointment strait, notwithstanding the fact that anyone else looking at his faithfully maintained calendar could see that there were irreconcilable conflicts on a given day: of course, keeping track of the day if the week would have been helpful. Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J, et al, J Int Neuropsychol Soc., 2010 May;16(3):566-73. Epub 2010 Mar 19, ONLINE TEXT @ http://www.rsds.org/2/library/articl...ychol_2010.pdf . And in this regard, you might also wish to check out the 2010 CRPS Blockbuster, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) Type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51. Epub 2010 Mar 24, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf , as well as its accompanying Commentary Article, Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul;150(1):4-5. Epub 2010 Apr 14, ONLINE TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf

Time to seriously get underway. Feel free to bounce any and all further questions off this forum or use the PM feature for anything requiring discretion, and generally keep us posted.

Mike

Hey Mike,

First of all: I can't thank you enough- your info is invaluable, and you are so good to take the time to share and help... a little bit of weight has already been lifted off my shoulders, now that I feel I have a tiny bit of understanding as to what to do, and where to start.

That being said- it's been a busy, and *painful* few days. Every single day is worse than the day before. Today, I broke down and called my neurologist- who, at the moment is still the one treating me (obviously), to see what else I can do for the pain. He said it'd be okay to double up on my vicodin at night (two pills instead of one)...not totally relieving the pain of course, but it's dulled at least. They also got me an appt to go in and see him tomorrow morning, basically I just need to get my pain under control in the short-term...long enough to be able to find a pain management dr and discuss nerve blocks, etc.

Not that there is ever a good time to develop this "beast" but now is just terrible...I'm in college, and have had exams every week for the last four, and I have finals through this coming up tuesday...but at least then I have a short break. Hopefully I'll be able to schedule appts w/a great new-found PM specialist by then! fingers-crossed

I'm wondering if I should tell my neurologist that I'm going to be looking for a pain management specialist to treat me...I'm thinking not, as it will probably either be taken as an insult, or as "drug-seeking" (as I've heard that PM sometimes get a bad rap). either way, probably not a good idea?? I'm going to hold off for now at least.

I'm really hoping that tomorrow will be a good day, and that my neuro and I will figure out better pain control- so that after my morning appt, I can dedicate the afternoon to searching, researching, and making calls to my ins company to track down the right doc to help me out of this mess!

One more question (for now at least, lol)- I noticed while doing just from some initial, general searching, that A LOT of dr's that come up show up as "accepting new patients?= no" Is that usually accurate? and if I were to call, and "plead my case" are they likely to accept me anyway do you think? b/c it seems like the best dr's wouldn't be accepting new pt's b/c they are good, and therefore are full... which is a bummer.

Anyway, again and again- thank you, Mike. You are truly a lifesaver!

Hi Finz,
Very nicely put! I guess I should say that after 5 years of trying everything and all meds, pain meds, etc. nothing worked for me except Fentanyl patch. I wore it for over 5 years and actually lowered it over the years too (along with everything each doctor had me on). I agree that each person is different and we all have different severities of rsd or other diseases. I have never had my pain totally gone and never get a buzz either on any of the meds. What works for one won't work for another. I think there are times when our pain is worse (like Pete said when weather changes come through) and we all have to do what helps us. I try to not take any pain meds but the burning pain is so bad I get severe chest pains every 3 hours and it feels like I am having a heartattack (EKG is normal) and if I can take something (after meditation, walking, trying everything, etc) that works like someone else said even 10% then it helps us be able to be somewhat "normal." But I think for a doctor to say opiods don't work and expect you not to have anything in case of severe pain is crazy. My thinking is: "We have a hard time getting pain medication from doctors yet...illegal drugs are everywhere (as I have been told by others and it is in the news too). I think the powers that persuade need to give the pain medicine to those like us that have pain and figure out a way to get the drugs off the street...that is the problem not people with rsd or chronic pain getting the medicine they need for when they need it. ok now I am off my soapbox for the moment. Just my two or three cents.
kathy d

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!

I agree with a lot of you that everyone with RSD is different. Just look at all the different classes of medications we are all on.
I've only been on one narcotic which is Methadone. All I know is that my pain skyrocketed on Methadone. In fact my left foot has never been the same since then and it has been about 9 months. My Neurologist had no idea why that happened and could offer no explanation. Since that episode I've been too nervous to try another narcotic.

Well I wanted to share my opinion. I could not survive without them
My pain is just too severve. However. I do believe that the breakthrogh meds do cause a flare up every 4- 6 hours. I do believe they can cause wind up.
Actually increase pain for a period each day. several tiems a day actually.
Having said that my pain with out them is so severe i have no choice but to endure it.
Dr. Schwartzman does not support the use of high doses as it interfers with the bodys ability to recieve the benifts of ketamine therapy. I believe i am quoting him correctly. I do know that is true.
Having had exensive ketamne therapy I know it lowers my pain threshhold considerably and therefor the need for such high doses of morphine and oxycontin for breakthough. actually right now I just switched i am on opana er and opana immediate release. so far the opana ir is just giving me horrible migranes and very litlte pain relief but i am only on the second day.I really want to get back to philly for more ketamine infusions but money is now a problem. I had infusions for 5 years. and the coma. I wish i had never stopped.
If anyone else is taking the immediate release opana would you please let me know if it is helping, Mine is 10mg dx every 4-6 hours up to 5 per day. I have not taken over 3 due to migraine. thank you so much cz

Hi, CZZZ4

Just a warning in regards to the Opana and the whole line of morphine based medications. I could not take it because it gave me such a dry mouth which caused problems with my teeth very, very quickly I had to go off. I tried both the opana and the avinza. My RSD is upper extremety so I used to be prone to getting migraines and at that time I was getting them more then I am now. Now I only get one very infrequently. If you start to get a dry mouth and you'll notice it it's very drastic, call your dentist. My dentist gave me another pill to bring the saliva to the mouth but I just didn't want to do it all. The name of the medication I don't remember but it started with an "R".

Good Luck,

Gabbycakes