I'm new and need advice re: treatments

[mrshippie]

HI, I have only had RSD diagnoxed in my ankle for about 1 year. I have been on a number of meds and they have not provided me relief. My current pain management dr. wants to give me a neurostimulator. I have heard lots of pros and cons to these. I really had hope to try less invasive, maybe alternative treatments before I give in to something which may cause scar tissue and related problems form such a surgical procedure. Any info or advice would be appreciated! Thanks and I hope you are all thinking positive and keeping your chins up!
mrshippie

[Rob123]

Hi, I have had RSD for almost 23 years and my Doctor wanted me to have a column Stimulator and I told him NO,and that I will keep taking the oral medicine call Dilaudid for my RSD Pain in my Left Foot.I feel the same way you do about the pros and cons and scar tissue,just ask your Pain Doctor about the oral medicine call Dilaudid for your RSD Pain,it does take the edge off your pain.

Take Care,
Rob

[lobelsteve]

If there is something that can help with the pain, I'd try it. No matter what.
SCS, Prialt, Sympathetic blocks and sympathectomy.

Most docs will not just Rx meds and not have you do procedures, therapy, psychology, biofeedback, whatever it takes.

The multidisciplinary model is more effective than any single arm of the model.
Just meds is not as good as meds and therapy. Do it all at once and you have the best chance of geting better. I think trying SCS is a no brainer. But it depends on your doctor- some are not so good at it and it takes forever and hurts for a week after. Others just pop in the wire like installing a stereo cable. I am one of the others, admittedly, and therefore biased on trying the stimulator out. I just do not see a downside. I've lost over $50k implanting a neuromodulation system in a patient because her insurance would not pay for it. Expensive write off for the practice, but her pain is gone and she has stopped taking all of her pain meds.

Whatever it takes.....

[Rob123]

Hi, Dr.Schwartzman the RSD Doctor said that SCS does not work well for RSD Patients,so why bother going thru it and putting a SCS into your Spinal Column if they dont work well for RSD Patients.

Rob

[lobelsteve]

Who is this Doc, and why is he so wrong?
SCS is the most effective modality for CRPS (RSD) at this time.

I have not read much of what Schwartzman has spoken of on RSD. But Bonica (main textbook on Pain Medicine) says otherwise, as does the literature. I do believe there is a decreasing effect of SCS over time, but it is still better than nothing.

Schwartzman is a Neurologist at MCP in Phila. He believes in Ketamine coma as a viable modality. Talk about risky....

I've got to pull him up on pubmed and see what he's done and why he says it doesn't work. More to follow.

On the website that is listed above.. http://www.rsdfoundation.org/en/UpdateSCS.html

Confusing out there. Ketamine coma is not available in the USA.

[lobelsteve]

A few minutes scouring the internet and some good info arises...

Below is from a Phila newspaper and provides the basic details on who/what/where/and how many.

A number of U.S. doctors use ketamine in small doses to treat pain while patients are awake, but Schwartzman and two German colleagues, Ralph-Thomas Kiefer and Peter Rohr, are the first to infuse it in comatose patients for up to seven days.

So far, the trio has treated 26 American patients in Germany. All patients received significant temporary pain relief, and nine remain completely pain-free from nine months to three years after the infusion.

Ketamine is FDA-approved in the United States for two-day use when the patient is awake, but Schwartzman holds out little hope that the coma procedure will ever be allowed here.

At Hahnemann University Hospital in Philadelphia, Schwartzman studies ketamine use for less severe patients and as boosters for those who have returned from Germany.

He just finished a study of 50 patients who were awake during five days of ketamine use - also not enough, he said - and plans to go back to the FDA in a couple of months for approval to try 10-day outpatient infusions.

It may seem strange for a mind-altering substance to be used medically, but the history of ketamine is like many other drugs - if it works for one thing, scientists say, let's see if it works for another.

"The problem unfortunately is that we have so many horrible diseases related to the brain and so few drugs," said Bita Moghaddam, neuroscience professor at the University of Pittsburgh who uses ketamine in rats to mimic schizophrenic symptoms. "If you have a drug you think is relatively safe, you have to use what you have."

Ketamine has also been used to study alcoholism and dementia, and explored as a treatment for sleep apnea and addictions and an aid in psychotherapy.

While many severe pain sufferers are enthusiastic about the ketamine coma, researchers are more cautious.

"Initial observations are exciting," said Srinivasa Raja, director of pain medicine at Johns Hopkins University School of Medicine. "But it has to be tempered with the fact that they are not blinded observations. They have to be followed through over time."

Timothy Lubenow, a pain specialist at Rush University Medical Center in Chicago, had a patient who went to Germany and "had great pain relief up until the plane ride back," he said. "She bumped her knee, which was the affected part, and the pain came back."

Schwartzman hopes that continuing research on treatments for severe pain will yield alternatives to the ketamine coma and that in the future "we won't need the ketamine sleep."

[Rob123]

Dr.Schwartzman, is a neurosurgeon,not a neurologist!!! if you go on RSD.org you could read what he said about SCS don't work well for RSD Patient.

Rob

[Cutiepie]

Hi Mrshippie,
I'm sorry you're at the one year mark and are still experiencing so much pain. I'm assuming you've tried the 'traditional' first treatment of blocks?

My RSD is in my hand and wrist. What helped me was a three pong approach - blocks, therapy (3 times per week for 8 months) and multiple meds (baclofen, clonidine and low dose nortiptilene). I also used demerol for the really bad days. I did lots of 'scrubbing' at first (literally using a brush and doing circular motions on the floor and gradually increasing the load) and desensitization techniques (cool and warm water baths, running my hand through various textures, such as pinto beans and rice). I have to say that I had an excellent hand therapist who researched RSD like crazy and was committed to helping me through it.

All of these together seemed to help. But my treatment started in the 'window of opportunity', at about 12 weeks. I'm not sure how well this protocol would work further on, but I believe 'nothing ventured, nothing gained'. I also want to add that I do not believe in the 'no pain, no gain' theory when it comes to RSD. Listen to your body and do not push it into a pain zone where the cycle is triggered yet again.

I'm not in remission, but I've reached a reasonable level. I still have sporadic burning (but not as bad as at first). My biggest problem now is that I can't close my hand and I'm losing strength even though I use my hand as much as possible. My atrophy is moving up my arm as well and I drop things all of the time.

But considering where I started, I'm pretty pleased with my overall progress.

I hope you find some relief.

Take care,
Julie

[DebbieHub]

I had the 5 day inpatient ketamine a la Dr S in NYC. IT did not work for me. I know several people who have had the tx by Dr S in Phili as well as 2 pple who had the coma in Germany- None of the people had lasting relief. Some had months of relief but I dont know anyone who had long lasting relief. The woman who went to Germany was great for a while but it didnt last.

I have also talked to people who have had bad experiences with the SCS- My RSD is in all four limbs so I dont think it would help me.\\

I dont think either option is great. There is research going on with Thelidimide but i am hearing there are bad side effects...

THis disease just stinks

Debbie

[lobelsteve]

I'd love to hear more about bad experiences with SCS for RSD. I perform 10-15 SCS trials and implantations per month- several on RSD patients. We have found that SCS is better for RSD than for post-laminectomy patients. I am wondering how people were trialled, who did the trial, and where were their leads placed. I think there are a lot of doctors doing these procedures because they are lucrative- and many have nothing more than a weekend course in how to do put the leads in.

[lobelsteve]

Dr.Schwartzman, is a neurosurgeon,not a neurologist!!! if you go on RSD.org you could read what he said about SCS don't work well for RSD Patient.

Rob

He is listed as Chair of the Dept of Neurology at Drexel.

A recent well-controlled study shows that with careful selection of patients and successful test stimulation, SCS is safe, reduces pain, and improves the health-related quality of life in patients with severe RSD / CRPS.

Kemler MA, Barendse GA, et al. Spinal cord stimulation in patients with chronic reflex sympathetic dystrophy. N Engl J Med 2000;343:618-24

Schwartzman RJ. New treatments for reflex sympathetic dystrophy. N Engl J Med 2000;343:684-86

An excerpt from the NEJM article states: "Two fine clinical studies of novel treatments for the pain and dystonia of reflex sympathetic dystrophy are reported in this issue of the Journal. Kemler and colleagues describe a randomized trial of spinal cord stimulation.14 In an intention-to-treat analysis, the patients assigned to receive this treatment had greater improvement in scores for the intensity of pain and the perceived effect of treatment than did the patients assigned to the control group. The health-related quality of life improved only in the patients who actually underwent spinal cord stimulation. Unfortunately, the patients had no functional improvement as a result of this treatment. Kemler et al. note that complications occur in 20 to 75 percent of patients who undergo spinal cord stimulation. In most patients, the complications are associated with unsatisfactory positioning of the electrode. The authors make a case for total coverage of the affected area with induced paresthesias in order to obtain a good result. Spinal cord stimulation is an invasive but safe and effective treatment for the relief of intractable pain in patients with reflex sympathetic dystrophy. "

[HopeLivesHere]

Hi,
There is another forum similar to this one that addressed the SCS. I will post it here for you to take a look at.

Since I have CSS, pretty much 4 limb RSD, etc I cannot use the SCS. We are hoping to get an OK for the intrathecal pain pump this year.
By the way, there are many threads on this new forum about the SCS.
There are chronic pain forums here and there with more info.

You do not need to join the forum to see the threads. I hope this helps: *******************************.com/showthread.php?t=996

This lady went on to get the permanent SCS and is doing wonderful so far.
What I don't understand is when people won't try one because some other RSD'r only got 1-3 years of relief when it stopped working !!! Who wouldn't try something that gives 3 years relief of pain ???? We take pills that last 4-12 hours and no one says "I wouldn't use pain meds, they only work for a few hours!"
I wish you only the best,

Hope

[alphacentauri855]

The fact that you say many doctors are not qualified or lack proper knowledge is in itself an argument against getting the SCS..And I wonder the patients you have done this proceedure on with RSD, do they have it localized on one limb or are they like me and have it full body?? There are too many ifs when dealing with SCS.. I myself do not want anyone messing around in my spine. It is bad enough that I suffer with the pain and limitations of RSD. I do not want to add to that "if" the proceedure goes wrong and has to be done over and over or worse can cause severe permanent injury..I for one would rather suffer more pain than to risk a "maybe" proceedure. and I say anyone offered the SCS should seriously research all that is intailed in it and the risks and the overall outcome of people that had it done..

[rainbow422@aol.com]

The general US procedure for CRPS, from what I am told by doctors is such...

Meds,
Nerve Blocks,
Stimulator after trial,
Morphine pump (last step as is expensive)

In the middle of these includes Physical Therapy and Occupational Therapy depending on what the doctor decides.

I hate to say this but for me due to other issues, anything past the med's is not an option.

There are also varied opinions on:

Tens Units (depending on location of injured area)
Acupunture
Naturalist remedies (herbs, suppliments and such)
HBOT therapy

Since this is different for all of us and there is no known cure they treat the symptoms.

This is just my 2 cents from what I have been told. There is also small room for error as brain is not always on top and thinking of every little thing. This is thanks to my lovely CRPS brain, meds and pain levels.

Many gentle huggys to all !!!

Rain :)