How is your memory? The only thing i am worried about is forgetting things with/about my kids.

That was one of the first things I gave them. They are so interested, the nurse I was talking to on the phone was almost yelling she was so excited. LoL I'm trying not to get my hopes up to much, but if this does not work then I will go the depression rout. I hate to do that, but I hate not being able to be the mom my kids need even more. Its not fair that they have a mom who is cranky all the time, and can't run after them. So I will do whatever it takes, but if I can just get enough of them excited about it then maybe just maybe we can do it without going through everything else.

Here's the scoop I've gotten on memory. For most folks the only memory loss involves the period in which you're being treated and relates to the details of events during that timeframe. For instance, you might not be sure which specific day that you did something. Or you might not be sure where you put something. Now I don't know about you, but for me these are everyday occurrences and not something new - LOL. It just goes along with the age. My ECT specialist says that's what virtually all his patients say. It's also possible that you might have a bit of trouble committing something to memory. So far - and remember I've only had one treatment at this point - I haven't felt any impact at all. Matter of fact I've been surprised how clearheaded I've been. Like anything else, I suspect it's likely to vary a bit from individual to individual.

To minimize and mitigate the effect on memory there are sedatives being used, it's being done as a Right Unilateral treatment (staying away from the language centers of the brain on the left side for a right-handed individual and the higher memory impact of Bilateral treatments), and finally they're using the minimum amount of current necessary to generate the required seizure in the brain. Turns out its quite a bit less for us girls than it is for the guys.

Here's something else for you to ponder in terms of getting this done. I suspect that all this is just as new to the insurance companies as it is to those of us interested in being treated here. And my experience with trying to get insurance companies to approve payment for a treatment that they don't already have on the list of approved/known treatments for a given disease/syndrome has been that it's challenging at best. And usually before they do so they want to see double-blind placebo type studies - which I don't even know how you could construct under the circumstances. So I suspect there would be a billing issue if you wanted to pursue this under a label that is new to them. For me personally it didn't matter and I just wanted to get treatment as quickly and expeditiously as possible - while I still have insurance, which is only for about another 6 months unless something else happens here.

So very happy your muscle soreness is only related to the sedative:)
I am truly looking forward to hearing more and more about your progress
This is very exciting news for all of us.
Much thanks to you and Mike and to all of us for putting up with this for so long


Peace

GnP

I don't have insurance, so it will all be out of pocket for me. I can't get coverd on any insurance since I got this when I was 15, and on my dads. So that does not matter. It is all just getting them to say yes.

Second treatment was this morning and it's WORKING! Right now there is no pain and I am able to walk normally with no assistance. This is the first time since 2006 that I am able to put full weight on the knee and take a normal stride. Range of motion is much improved and something I think I can now work on with PT again.

WAHOO!!! :yahoo: After having spent weeks and sometimes months in unending level 9 and 10 pain this is amazing!

Michael - I cannot thank you enough!! Excellent work my friend! :hug:

YA!!!!! I'm doing a happy dance for you! NO PAIN?!?! What is that like? I'm so happy for you I'm crying! That is so amazing!:hug:

It's surreal, let me tell ya. It makes you just pinch yourself and wonder was all of that really real? It's just GONE. :holysheep:

Now I just wish the same for the rest of you ...

The nurse called me back today. She says that when she brought it up to the doctors they told her "We have heard of it, and [I]we[I]do not do that! It is for people with [I]other[I]issues" I started to bawl on the phone with the nurse. So on to plan B. I'm going to call every hospital in america and some European countries till I find someone that will do it. I'm not dep[ressed by any means so I doubt I could get it done for that.

The day after the second treatment this time is MUCH more comfortable. I think they gave me Toradol this time and whether it's responsible or not - I don't have the extreme muscle soreness that I did after the first treatment.

If the rain will hold off here, I think I'll go work my RSD knee in the pool this afternoon. Need to build up some strength. :trampoline:

WOOOHOOO!!!! How exciting! I"m happy your not as sore this time! I hope they found the right mix of things.

This is most exciting news
I am SO SO happy for you :)
I am going to find out how I can do this right away so I can be next.

I will meet you on the slopes next year- ;)

Gmom-Did you bring Mikes article and all the article he has referenced with you posted at the beginning of this thread to an appointment with these people ?.
It will certainly strengthen your argument if you go prepared and armed with evidence that this is a viable option!
They will have no reason to turn you down !!!
Good Luck

Peace
GnP

I did give that to the nurse. The doctor wont even talk to me. I am now trying to get in touch with research hospitals. So we will see. If you find someone that will do this for you please let me know who they are! I will let you know what I find out as well. If you want to know about the cost with out insurance it is about $1500 each time. I'm not sure what insurance will cover and what it wont. I have to pay out of pocket though since I can't get insurance. GL in getting it done! I'm so excited that there is some hope!

Dear GJmom -

My heart was saddened to hear of your experience with your local hospital, but it fits with what happened to me, when I guy who had come well recommended excused himself as a "small town ECT doc" who couldn't posibbly get his hospital to approve it and suggested instead that I seek out a "tertiary medical center," i.e. something connected to a major medical school, and that's where I'm going. The alternative, as has been suggested in this thread, is to ask yourself whether RSD and the resulting social isolation has left you really depressed. If the answer to that one is "yes" then we need say no more . . . .

Secondly, janism raised the issue of memory loss. In addition to using RUL etc., the other thing that really struck me when I put together ther article was research showing that there wasn't even any temporary loss in short term memory when ketamine was used as the general anesthetic, which is really exciting because short term memory loss was always understood as just the basic price of admission for the procedure.

I wish you only good luck in finding a place that can do this for you.

Mike

ps Janism raised the list of article that I will happily email to anyone in pdf formats. For anyone's reference, that list is as follows:

Key Relevant Articles re RUL ECT as Treatment for CRPS-1 (RSD)

1. Rasmussen KG and Rummans TA, "Electroconvulsive Therapy in the Management of Chronic Pain," Current Pain and Headache Reports, 2002, 6:17-22;

2. Wolanin MW, Gulevski V, and Schwartzman RJ, "Treatment of CRPS With ECT," Pain Physician, 2007, 10:573-578;

3. McDaniel WW, "Electroconvulsive Therapy In Complex Regional Pain Syndromes, The Journal of ECT, 2003, 19:226-229;

4. Wasan AD, Artin A, and Clark A, “A Case-Matching Study of the Analgesic Properties of Electroconvulsive Therapy,” Pain Medicine, 2004, 5:50-58;

5. Sackeim HA, Prudic J, Fuller R, et al., "The Cognitive Effects of Electroconvulsive Therapy in Community Settings," Neuropsychopharmacology, 2007, 32:244-254;

6. Takano H, Motohashi N, Uema T, et al., "Changes in Regional Cerebral Blood Flow During Acute Electroconvulsive Therapy in Patients With Depression, British Journal of Psychiatry," 2007, 190:63-68;

7. Fukui S, Shigemori S, and Nosaka S., "Changes in Regional Cerebral Blood Flow in the Thalamus After Electroconvulsive Therapy for Patients With Complex Regional Pain Syndrome Type 1 (Preliminary Case Series)," Regional Anesthesia and Pain Medicine, 2002, 27:529-532;

8. Maihööfner C, Handwerker HO, Neundöörfer B, et al., "Cortical reorganization during recovery from complex regional pain Syndrome," Neurology, 2004, 63:693-701;

9. Nobler MS, Oquendo MA, Kegeles LS, et al., "Decreased Regional Brain Metabolism After ECT," Am. J. Psychiatry, 2001, 158:305-308; and

10. McDaniel WW, Sahota AK, Vyas BV, et al. "Ketamine Appears Associated With Better Word Recall Than Etomidate After a Course of 6 Electroconvulsive Therapies," The Journal of ECT, 2006, 22:103-106.

fmichael~
Thank you for your response! I know I'm not depressed, and will very much so hate to go that rout, but if that is the only thing I can do then so be it. I have called a hospital in Portland that is connected to a school, and "prides" itself with doing research. So we will see were I get with that.
What department did you talk to? I called the ECT unit at the Portland hospital, but I'm not sure if I should also call the neuro department. Do you have any suggestions?

Dear GJmom -

Assume we're talking about Portland Health Sciences (OH & SU). The department in question would be psychiatry, and what you would want to find out is whether there is an ECT coordinator (maybe an RN) who could tell you whether anyone there is working with RUL ECT as a treatment for chronic pain. That said, I just checked out its webpage for clinical trials and didn't see anything relevant, searching under both pain and RSD (http://www.ohsu.edu/research/rda/so/index.php) but that may not mean anything.

Alternatively, I have an uncle who is a relatively recently retired psychiatrist from a teaching hospital in Seattle. I don't know of he's in the country right now, but I will attempt to reach him on Sunday, on the assumption that he must know more than a few psychiatrists in Portland. Should I get a name, I will send you a PM.

Mike

Just wanted to let you all know that I talked to my PM about this. He was open to it & gave me the number of the psychiatric unit at a teaching hospital. He said, by definition, all people with RSD are depressed. No offense, GJmom. I think it's his way of saying that we should be able to get it. Maybe, away around the insurance. Glad he is in support of it. He went into detail decribing ECT to me.

Janism, I am so happy for you.

Linmarie

fmichael~
OH & SU is the one I called. I also did not see anything on the web page, but figured I'd give it a shot. I have also called some hospitals in Seattle, Salt Lake, I have one in Florida that I will call on monday. Thank you so much for all of the info! You are the best!!!!:hug::)

Linmarie~
No offense taken at all. :D:winky:

Third treatment was Monday AM and uneventful. Am walking around without assistance now and even had lunch today with one of my friends from another forum. How nice to be able to put a face with a name!

It's really nice to hear that ECT is making such an apparent improvement for you. Thanks for keeping us posted.

Mike

If it's done on an outpatient basis (and no reason it can't be), then the cost is in the range of $1500 per treatment. :) Of course that's only if you don't have insurance. Otherwise they'll pay for it.

Thanks Mike!

It was really wonderful to go to lunch and leave my cane in the car! :hug:

Fourth treatment was today and only side effect I'm having is sleepiness from the sedative. :Zzzz: Looks likely that I will only need a total of 6 treatments so we're scheduling two more for next week (Wed and Fri) and then going to see whether any more are needed or not. Acid test will be this weekend when a huge weather front moves in as that has always crippled me with pain in the past ... :rain:

Hey Janism...
 

I am sooo pleased to hear that the RUL ECT's are going well for you and I hope you continue to get pain relief.
I will keep you in my thoughts and please keep us all updated when you can
Best wishes and Pain free hugs
Alison
xxx

SO HAPPY for you:)
I hope many more will be able to explore this option .
What a treat that would be .
We have to start advocating with our doctors to make this happen
One by one will will break down the barriers to access and create cases where this works!!!!!!
Jan has already proved that to be true!

The docs will not connect the dots on their own - look how far it has got us :eek:

Good luck - as Mike said - run with it :)

Peace

GnP

Janism- could you direct us?
 

Hi I am so happy to hear about your results- it is just incredible. So much hope for all of us. I was wondering if you would mind just posting what state you are in-(and still protect your privacy) just because you were able to get approval so quickly. It would give a good reference for the rest of us who want to pursue this. Thank you so much, CZ

It's really not about the state I'm in, altho if you PM me I'll be glad to share that with you as well. It's about the fact that I was already established with a psychiatrist and had a well-documented history of depression. That put me in the proverbial fast lane and all I had to do was ask.

It's worth noting that several storms have now moved through the area and have had NO IMPACT. In the past, that was all it took - a significant shift in barometric pressure and I'd be crippled and bedridden with level 9/10 pain. This is a tremendous turning point for me. ;)

I am so happy for you & really appreciate you posting your status. I am working this from my end. I've also passed out Michael's article (thanks again). I have had RSD for 4 years & this news is so encouraging.
Linmarie
:hug:

YAY to you doing so well! I am so happy for you. :hug: so much hope for the rest of us :grouphug:

possible bingo
 

About 10 days ago, Linmarie included a posting on this thread in which she said, in part:

Just wanted to let you all know that I talked to my PM about this. He was open to it & gave me the number of the psychiatric unit at a teaching hospital. He said, by definition, all people with RSD are depressed. No offense, GJmom. I think it's his way of saying that we should be able to get it. Maybe, away around the insurance.

Well, I met this morning with my psychologist, who raised the possibility that DSM IV Diagnostic criteria 293.83 for Mood Disorder Due to . . . [Indicate the General Medical Condition] might be able to provide a psychiatric diagnosis that we, our insurance companies and the ECT practitioners could live with. The full version of the Diagnostic Criteria reads as follows:

DSM IV Diagnostic criteria 293.83 for Mood Disorder Due to . . . [Indicate the General Medical Condition]

A. A prominent and persistent disturbance in mood predominates in the clinical picture and is characterized by either (or both) of the following:

1. depressed mood or markedly diminished interest or pleasure in all, or almost all, activities

2. elevated, expansive, or irritable mood.

B. There is evidence from the history, physical examination, or laboratory findings that the disturbance is the direct physiological consequence of a general medical condition.

C. The disturbance is not better accounted for by another mental disorder (e.g., Adjustment Disorder with Depressed Mood in response to the stress of having a general medical condition).

D. The disturbance does not occur exclusively during the course of a delirium.

E. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

I have submitted this for my PM/shrink's review, but it surely looks like an interesting possibility.

Mike

Great find Mike! Hope that allows you guys to run with it!! ;)

And speaking of running with it, CONGRADULATIONS BOSTON!!!

Had my 5th treatment today and all I can say is there's nothing here but upside folks (meaning it's all positive as far as I can tell). RUN - do not walk to get treated here as quickly as possible and get out of pain or at least get to a much more manageable level of pain!!!

Jan,

GREAT NEWS!!!!!
Thanks for keeping us posted

and MIKE
Those Celtics did indeed "run with it"
They were AMAZING :p:cool::D:):)
Our Lakers didn't have a chance :(

peeeeaaaaccceee

GnP:)

I'm disappointed to say that I'm logging back in today in order to report that this last treatment (on Friday the 20th) did not go well - pain in my knee actually increased rather than decreasing. Moreover, this time I am indeed experiencing noticeable and uncomfortable problems with short term memory loss and reliability. According to my partner (who is generally more attuned to these things than I) there has been noticeable memory dropout occurring since somewhere around the 3rd or 4th treatment.

Impact is enough that I won't be having any more treatments and am hoping that it clears up quickly now that we have stopped treatments. :(

Dear Jan -

PLEASE do not drop out without talking to your psychiatrist. It is my understanding that unless ketamine is used as the general anesthetic, a temporary loss in short term memory almost always "goes with the territory" of RUL ECT, but one recovers from it after 4 - 6 weeks. (This is in marked distiction to BL ECT, where there can be permanent retrograde amnesia.)

Frankly, I'm somewhat surprized that your practitioner didn't mention this up front. But seriously, it is not to worry.:grouphug:

Mike

Hi Mike,

Yes, they did mention it up front. And yes, I understood it to be temporary. But that will be the end of treatments for me.

Dear Jan -

I'm sorry, but not sure that I'm entirely following. Where short-term memory loss issue is apparently temporary, I am assuming that the return of the knee pain has been particularly discouraging. Is that correct?

If so, let me be forward enough to suggest something of a paradox. And here I don't mean to be intrusive, but if the return of your physical pain is largely driving your decision to opt out out of futher ECT therapy, do you have any sense of the extent to which your affect is playing a role in the weighting of the knee pain in your decision making? As opposed, for instance, to hanging in there a couple of more rounds just to see what happens, where you've already gotten substantial pain relief, bearing in mind the finding of Wasan, Artin and Clark that the analgesic and anti-depressive effects of ECT are substantially independent.

Just total speculation on my part, so take it for whatever it's worth. I wish you nothing but good things and a speedy recovery from your short-term memory loss, and my thanks for your courage in sharing your experience with us.

Mike

Mike, et. al.,

I think there's a bit of misunderstanding afoot here. Am not leaving because the pain in my knee got worse (temporarily) but because I already felt that I had gotten all the benefit I was going to get here and was merely doing a few more treatments to "feather it out" as the ECT specialist put it before ending things. When the memory problems started showing up I merely decided that they were unpleasant enough that it wasn't worth "feathering it out" and I'd had enough.

With the benefit of hindsight, I could have stopped after the first couple of treatments and gotten the same analgesic effects. Actually I think I got almost all of the pain relief realized with the very first treatment ... just wanted to make sure.

Dear Jan -

The only reason for my inquiry is that there is in fact evidence in the literature as to when and how there is a positive response to ECT, in terms of pain levels, and it is frequently progressive over time:

There was a progressive lessening of pain over the course of ECT treatment. A course of 8 bilateral ECT treatments resulted in a dramatic reduction in pain.

"Case Reports: Chronic Pain With Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assessed by Single Photon Emission Computed Tomography," Sei Fukui, M.D., Ph.D., Shino Shigemori, M.D., Atsushi Yoshimura, M.D., and Shuichi Nosaka, M.D., Ph.D., Regional Anesthesia and Pain Medicine, Vol 27, No 2 (March–April), 2002: pp 211–213 at 212; "Electroconvulsive Therapy in Complex Regional Pain Syndromes," William W. McDaniel, MD, J ECT 2003;19:226–229 (reporting on one of three participants in ECT treatments for pain co-morbid with major depressive episodes):

Her right arm had been injured in a motor vehicle accident 5 years earlier, and although the multiple fractures had healed, she developed severe CRPS and her dominant right hand was crippled by joint contractures. She listed the pain and disability as the most important stressors contributing to the depression. She was hospitalized with suicide precautions. Her ineffective antidepressant medications were discontinued. She was treated with a series of 12 treatments of ECT with bitemporal electrode placement under anesthesia with methohexital 80 mg and succinylcholine 80 mg. Her ECT was performed using the MECTA SR-1 using a dose titration protocol with the dose set just above the seizure threshold. The treatments were well tolerated, and she demonstrated improvement in mood beginning by about the third treatment. Her immobile right hand began to move after the fifth treatment, and physical therapy was initiated. By the 10th treatment, the pain, stiffness, discoloration, and coldness had resolved. By the 12th treatment, the remission in her depressive symptoms seemed stable, with normal sleep, appetite, and concentration, and treatments were discontinued.

Finally, in their 1993 study:

King and Nuss reported the case of a 32-year-old woman status post left arm injury and arthroscopic repair of ligament damage. She subsequently developed reflex sympathetic dystrophy of the left arm characterized by weakness, piloerection, swelling, decreased range of motion, discoloration, hyperesthesia, and disability from work and sports activities. She became depressed and was admitted to a psychiatric unit. Behavioral pain management approaches, antidepressant medication, and stellate ganglion block did not help, and after a suicide attempt, ECT was commenced. For 12 hours after the first treatment, the arm was normal in function, pain free, and not discolored. Over the course of the next seven treatments, the period of improvement steadily increased. On 6-month follow-up, the patient’s arm remained normal in function and without the objective physical stigmata of reflex sympathetic dystrophy. [Emphasis added.]

"Reflex sympathetic dystrophy treated by electroconvulsive therapy: intractable pain, depression, and bilateral electrode ECT," King JH, Nuss S: . Pain 1993, 55:393–396, as cited in "Electroconvulsive Therapy in the Management of Chronic Pain," Rasmussen KG and Rummans TA, Current Pain and Headache Reports 2002 6:17-22 at 20.

I share these for whatever they are worth and, as always, would be happy to email copies of the articles to anyone who's interested.

Mike

Thanks Mike - good point! Originally we had planned to do 12 treatments for that very reason ... because it looked to be the outer edge of progressive relief being realized. Just didn't work out that way for me, but certainly may for others.