feeling defeated... any advice?
 

I have no idea even where to begin. I have been so good lately... I have been with my doctor for over 2 years and have had no problems. The last two appoinments... not so much... This last appointment he is telling me that I am not handling the pain and am making myself worse and I need to change my way of thinking. Let me just say.... I do EXTRAORDINARLY well for an rsd patient for one ketamine infusion every 3 months. I still can drive, I still am very active for having rsd... I take spin classes when I am feeling good... I push myself to get up and get out of the house even when I feel like I am going to die. I feel like everything has just turned upsidedown. He wants me to take this month program that is 50,000 dollars which is out of the question... I live a life that I can handle my pain, but the whole saying, i dont think the ketamine is helping you. I would like him to feel what I feel like. its so frustrating. its not like he isnt a good doctor. him and shwartzman are friends, and is great, and I have never had a problem. But i feel like maybe i tell him too much, and maybe i am expecting too much out of when he says i dont want you to have pain I have that goal in mind?? When maybe it is not even realistic? Because he said you can have pain just not suffering pain.... I literally feel sick to my stomach, i dont want to get out of bed, but I am and am going to go do errands in a little bit.
All of my friends that took his program hadnt accepted the rsd, were in denial, wanted to kill themselves, have no family support, could not walk... that sort of thing. I am wayway past all of tht. And I know I wont benefit from it. Its like I know my body better than that. I just feel scared forthe futrure and how I am going to have to go back to the pain I used to live in before I had ketamine.... its a scary as hell though.

Is it too much of a goal to think that I wont have pain and that I strive for that and kind of expect that out of my doctor when he tells me I wont have pain? I just need something of some sort of how to handle this situation...

Dear Hannah -

Please describe the $50,000 program in greater detail, and let us know whether your doctor practices out of the South Bay, Santa Monica, the 7th floor of the "100 Building" or SC. (My naive guess is Door No. 3.)

PM me the answer to the second half of the question, if you are more comfortable doing so. Thanks.

Mike

The program is 4 weeks long 5 days a week... includes physical therapy, shrink, bio/neurofeedback, and weekly nerve blocks not sure how many a week, and spinal cord stimulation trial.....thats not including food, transportation, or hotel... highway robbery

For me I know what works for me: Ketamine infusions every 3 months medication and going to the gym 4-5 days a week, and spending time with people. I am very active and am have the drive to move and do things through the pain. He wanted to put another stimulator in me for my leg and other arm and i said HEEEEELLLL to the no. I can not go through another surgery. He feels like "little" things set me off bad... which I dont understand... how is having wisdom teeth out (them leaving a chip of bone in and getting 4 abesses and every abcess they have to go in cut open my gum and scrape around to try to find what is causing it), after having ketamine being in the hospital at the hospital still, having one of those heavy suction doors slammed on my hand while I was under anesthesia from ketamine still... getting pushed down a flight of wood stairs outside and summersaulting down and then hitting gravel on my face... those for a person WITHOUT rsd it would be painful- let alone a person WITH rsd.
I have finally found what works so I can live my life, and now he wants to change everything... and i know its bad to think, but he pockets a shitload of money from the program and I just dont want to do it. If i wasnt walking, or couldnt use a limb like I was 3 years ago I would think about it and consider it immensely because I would NEED all of that treatment... but it just doesnt make ANY SENSE for me right now at my stage of rsd. I have learned how much i can and cant do and what medications to take to allow me live. I still live in bad pain, but I am not suffering all the time. When I start to suffer and mentally cant handle how bad the pain is... I go in for another ketamine infusion and it decreases the burning pain. SO... I found my road.... and I am just so frustrated and have no idea how to handle this when I am in a sense being pushed pushed. I have my mom on my side and when we go in next we have to handle this, but I need to do it wisely because I dont want to lose my doctor. He is the only dr that gives high amounts of ketamine and I have been with him for years, But i need to get to the bottom of this and really need some advice coming from other patients who deal with doctors that need a kick in the bum. LOL Am I making sense?

I took part in a similar program at Cleveland Clinic. It was a day program 5 days a week 8 plus hours a day for a month plus. It consisted of PT,OT,therapy,group therapy I could go on. My pain was so high that I only lasted a few days and was sent to the anestesolgist pain doctor. The program also seemed for many as a way to get off any narcotic meds that they were on. I was not on any and never had an abuse issue. I looked into other programs like at Mayo and they are similar.

Hi Hannah,

It's ashame you have to go through this. It's hard enough to find a commident PM doctor. I just recently switched PM doctors after 8 years with the same doctor. I only switched for convience my original doctor was sometimes 2 hours away, I had to drive into Manhattan and some days it was so hard just to get there with the horrible city traffic, I just couldn't do it anymore.

I think your correct I would definitly address it with him. There has to be some reason, probably nothing to do with you, that he is acting like this out of the blue. If he gets a kickback for this $50,000 program he must need money. And maybe you want to cover yourself my looking for a new doctor. I found it very hard to find a good doctor closer to my home. Some of them are nuts. I finally did find someone and things are going well.

I wish you all the best.

Gabbycakes

Hannah,

There is no way you should even consider this program if you feel this way.

Doctors are free to make recommendations, but you are the ultimate person in control.

I know it is difficult to consider, but you might want to at least start thinking about another doctor to be the primary here for your CRPS. I know very little about Ketamine, except that it is a godsend for some CRPS patients. Are there any other doctors you would consider?

It's essential that you trust your doctor and that you are both on the same page.

I've bailed on one doctor and a couple of physical therapists. The doctor because of his attitude and lack of CRPS knowledge and the therapists because one was too aggressive and the other had no clue. Best moves I've ever made.

Good luck to you

hi
 

Hi there,

I see that you are in LA, if its not too personal may I ask who your doctor is and what dosage of ketamine he gives you and over what period of time?

I too get ketamine in LA and 50 grand sure would buy a lotttt of infusions so I'm just curious.

Hang in there,
Dee :hug:

Hannah -

Thank you for the information on your doc, I assume you've seen my private comments. But as to the to concept as a whole, one size doesn't fit all. And what might be appropriate for someone with either fresh onset or newly diagnosed RSD/CRPS may not be appropriate in other cases.

I too was in such a program on an out-patient basis, a little over a year into the disease, without the nerve blocks, where they had long-since lost their effectiveness. For want of a better word, much of it seemed irrelevant to my situation. It offered primarily conventional PT and its strengthening exercises, which I and a few other folks I know find to be death for RSD: far better are programs oriented around stretching and "nerve gliding" exercises. (And for that, you will want a therapist with the full on DPT degree: approx. 3 & 1/2 years of graduate school on top of a BS/BA.) And occupational therapy was pretty much a waste for me as well, but might be of greater assistance to others.

Nor did biofeedback set my life on fire. And as far as the psychotherapy goes, I likes the psychologist well enough, but at my exit interview he told me that I understood more about the relationship of physical pain and emotional responses coming in, than most people did upon completing the program: just as you suspect would be the case for you. But in that regard, a few months later I was to get a great deal more out of a $600 Mindfulness Based Stress Reduction (MBSR) class, a program set up over 30 years ago by Jon Kabat-Zinn at and still maintained by the Univ. of Mass. Medical School, bringing the skills of cultivating sensory clarity and equanimity from meditation and yoga (great for proprioceptive skills on which CRPS inherently does a number) to people primarily in chronic physical pain. For anyone interested, here's their homepage http://www.umassmed.edu/Content.aspx?id=41252, along with a search engine for locating trained teachers, worldwide http://w3.umassmed.edu/MBSR/public/searchmember.aspx.

But now let us get down to where pain physicians make their money, procedures. The program that was presented to you offered two: a trial of a SCS and weekly nerve blocks. While this may mot be the time and place to get into a weekly discussion of SCS, I at least hope you were advised that, even in the best case outcome, they work for no more than three years. See, Spinal cord stimulation for chronic reflex sympathetic dystrophy--five-year follow-up, Kemler MA, de Vet HC, Barendse GA, van den Wildenberg FA, van Kleef M. N Engl J Med. 2006 Jun 1; 354 (22): 2394-6 http://www.nejm.org/doi/full/10.1056/NEJMc055504.

And as to weekly nerve blocks, the literature has been pretty clear, in the absence of a fresh injury (including elective surgery where it they appear to have considerable prophylactic value) sympathetic nerve blocks rarely work more than a few months after 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, South Med J. 2006; 99: 1084-1088 http://www.rsds.org/pdfsall/Ackerman...lion_block.pdf. We also have the following in straightforward language from the RSDSA:

Clinical Q & A: Can there be too many sympathetic nerve blocks for the treatment of CRPS?

By William E. Ackerman, III, MD

Yes and no. Not all CRPS patients respond to this therapy. If patients get transient relief, allowing them to participate in physical therapy or not have to increase their medications, sympathetic nerve blocks are indicated. If no relief is noted after two blocks, then why repeat them? The results will not be favorable. Sympathetic blocks must be performed early in this disease to be effective. At that time, 2 to 3 blocks are usually effective.

The longer the duration from the onset of CRPS until the first injection, the worse the results. For example, a patient with CRPS for 12 months will have poor results with a sympathetic block. However, if a patient receives an injection within the first 2.5 to 3 months, the results should be good. This is why an accurate diagnosis of CRPS must be made in a timely fashion. Failure to do so may condemn a patient to life-long severe pain.

A sympathetic nerve blockade, however, is not a totally benign procedure, with side effects that include elevated blood sugars, rash, itching, weight gain, soreness at the injection site, bleeding, seizures, and death. Blockades are also more efficacious with decreased vasomotor activity, but become less effective with increased vasoconstriction. Therefore, the effectiveness of a sympathetic nerve blockade is based on the duration of the symptoms and blood perfusion in the affected area.

RSDSA Review. Winter 2008.

http://www.rsds.org/publications/Ack...inter2008.html That said, if there is spread to a new extremity, some recent evidence suggests that the inflammatory processes are beginning anew - in that location - so that the clock for the effectiveness of sympathetic nerve blocks may be in effect reset, but only as to the new area of spread. [Reference available on request.]

Accordingly, if you have had CRPS for a year or more, and aren't experiencing spread to a new extremity, what's the point of an expensive program built around weekly nerve blocks?

Mike

PS to last
 

I can also give personal references for a couple of great MBSR teachers in the LA area (Santa Monica and Studio City). Their 8-week classes for new students will begin in the fall.

The program consists of a 2 & 1/2 class once a week, an hour or so of daily practice with the assistance of guided meditation, mental "body scans" and yoga on CDs the teacher will prepare for the class, culminating in a day-long "retreat" at the end.

I've been studying meditation with Shinzen Young (and others) for nine years at this point, and am starting to help other people learn to use meditative techniques in dealing with chronic pain. It's fabulous in terms of learning to live a life much more at ease with pain. Or as it is said, pain is inevitable, suffering is optional. And here's the funny part about life with CRPS, I've found that dealing with the physical pain is not so hard. That can be learned in a short period of time, but working with the emotional pain of life not going according to "plan," that is the heart of practice.

Then too, the momentum of my daily sitting practice has never been stronger than when I finished my MBSR class, a year and a half into this thing, and a while back.

Mike,

Wonderfully put. You stated it perfectly, "but working with the emotional pain of life not going according to plan, that is the heart of the practice".

Gabbycakes