Treatment

Treatment may include a wide variety of medications, nerve blocks, physical therapy and psychological support for people with RSD/CRPS and their friends and family. Occasionally, surgical procedures are needed to control pain and abnormal nervous system responses. Treatment is individual. Each person should have a treatment plan that includes pain control, psychological support, and physical and occupational therapy.

This information was obtained from the RSDSA publication, “Recognizing, Understanding, and Treating CRPS.” For additional information visit
Recognizing_Understanding_08.pdf

 

TREATMENT OPTIONS INCLUDE:

-Drug therapy (oral meds and infusions)

-Physical and aquatic therapy

-Transcutaneous electrical nerve stimulator (TENS unit)

-Nerve blocks

-Implantable spinal cord stimulator or drug delivery infusion pump

-Sympathectomy

-Heat therapy

-Ketamine infusions  

  •   low dose as an outpatient
  •   5 day, medium dose, administered in the hospital
  •   ketamine coma  (not available in the US)

 

The following information was provided at

www.fightingagainstrsd.tripod.com/treatments.html

     This section is to provide you with the knowladge about treatments for RSD. Please remember to disscuse treatment with your doctor. This section is only to inform you about treatments for RSD

Because research is so recent, there is not a lot in the way of treatment. Most treatments for RSD revolve around pain-control. While this is all some patients need, a very good percentage of RSD patients have other symptoms that need to be taken care of (muscle weakness, dystonia, tremors, etc). Every RSD patient is so different. One thing might work wonders for one patient and it may make the next patient ill. With more research we hope that there will be more treatment options for RSD.

One of the most common treatments for RSD are Nerve Blocks.  Nerve Blocks are an injection of local anesthetic to block the passage of impulses along nerves. Below are different types of nerve blocks:

  • Sympathetic Nerve Block: A sympathetic nerve block is one that is performed to determine if there is damage to the sympathetic nerve chain. This is a network of nerves extending the length of the spine. These nerves control some of the involuntary functions of the body, such as opening and narrowing blood vessels.
  • Stellate Ganglion Block: This is a type of sympathetic nerve block performed to determine if there is damage to the sympathetic nerve chain supplying the head, neck, chest or arms and if it is the source of pain in those areas. Although used mainly as a diagnostic block, the stellate ganglion block may provide pain relief in excess of the duration of the anesthetic.
  • Bier Blocks: This is another technique used to carry out a sympathetic block involving the injection of sympathetic blocking agents into an extremity and limiting spread of the agent to the entire body by applying a tourniquet to the extremity.  This method requires placing an IV in the painful extremity and may be technically extremely difficult due to severe swelling (edema) of the extremity
  • Lumbar Sympathetic Block::Lumbar Sympathetic blocks are just like Stellate ganglion blocks. the only difference is that the block is performed for your lower extrmities

http://my.clevelandclinic.org/services/nerve_block/hic_nerve_blocks.aspx

Here are other treatments for managing RSD pain:

Tunnled Epidural Catheter (TEC) : A TEC is a very fine plastic catheter (tube) that is placed through the skin into the epidural space in your spine. This temporary catheter is left in place for a defined period of time; normally less than (2)two weeks. The catheter allows access to the epidural space to inject medication such as local anesthetics and/or narcotics for relief of pain. Temporary epidural catheters are used for tempory treatment of painful conditions that require pain control for intensive physical therapy.

Spinal Cord Stimulator: It is a therapy that uses electrical impulses to block pain from being perceived in the brain. Instead of pain, the patient feels a more pleasant tingling sensation. The other thing about it is you are able to control if you want / need more relief, less relief and you can turn it off and on simply with a remote.

ANS Spinalcord Stimulator Website:http://www.ansmedical.com/patients/WhatToExpectWithASCS/WhatToExpectwSCS.html

Medtronics Tame The Pain Website: http://www.medtronic.com/neuro/ttp/index.html

Here is a video for the Spinal Cord Stimulator:http://www.medtronic.com/neuro/ttp/neurostim_therapy_patient.html

Pain Control Pump: Intrathecal drug delivery is designed to reduce pain by delivering pain medication to the intrathecal space surrounding the spinal cord. Because this therapy delivers pain medication directly to the receptors in the spinal cord, smaller doses of medication are required to gain relief

Medtronics Tame The Pain Website: http://www.medtronic.com/neuro/ttp/index.html

Here is a video for the Pain Control Pump:http://www.medtronic.com/neuro/ttp/idd_therapy_patient.html

Ketamine Coma: The Ketamine Coma is an experimental treatment that is not FDA approved therfore it has to take place in either Germany or Mexico. Dr. Robert Schwartzman and Dr. Kirkpatrick. It is only for the worst of the worst of the RSD patients. They put you in a 7 day coma using Ketamine in hopes that it will re-set the pain signals in the brain.

http://www.mapinc.org/tlcnews/v05/n1371/a03.htm?158

http://www.webmd.com/video/ketamine-chronic-pain - Video on the coma, Web med

http://www.rsds.org/3/treatment/ketamine.html - Ketamine Coma Infusion Therapy, RSDSA

http://www.rsdfoundation.org/en/Anesthesiology.htm - Relief for Wrorst RSD May Lie With Ketamine Coma, RSD Foundation

http://rsds.org/2/library/article_archive/pop/harbut_correll_IV_Ketamine.pdf - Ketamine Case Study, RSDSA

http://rsds.org/2/library/article_archive/pop/ketamine_neurology_today.pdf - Neurology Today Ketamine Case Study, RSDSA

http://www.youtube.com/watch? =n5aVCJ8-Ahw ->Disclaimer: The information on RSD in this video is not entirely accurate

http://www.rsdfoundation.org/en/Medical_Synopsis.htm - Medical Synopsis of Ketamine Coma Patients – RSDFoundation

Physical / Occupational Therapy: Physical therapy is primarily used to strengthen muscles (although it can also be helpful for building bone density, improving circulation, improving nerve function and endurance). Physical therapy can be “the cure” for some RSD patients while others have no response or negative responses to physical therapy.

Also there is a lot of debate in the medical community to how much therapy an RSDer should get. Some argue children should get intense therapy daily while others think they should get 1 hour of therapy 3 times a week.

Physical Therapy and RSDRSDhope Organization

http://www.rsds.org/3/treatment/PT_OT%20index.html - RSDSA PT/OT Treatment

Overview of Ketamine Infusion Therapy
By Philip Getson, DO

Patricia Curiale led an active life until an auto accident in 1998 triggered CRPS. After five years of living with pain that she rates “50 on a scale of 10,” she was enrolled in our outpatient program that uses ketamine to treat CRPS when other conventional treatments fail. Ketamine is an anesthetic previously used in the operating room and for emergency situations in patients with unknown medical history (eg, traffic accidents).

Ms. Curiale frankly credits the ketamine with saving her life. “I can understand putting a gun to your head to stop the pain,” she says. Although she currently rates her pain at “about a 5,” she can live with that. Plus, she has been able to get out of her wheelchair and walk, something a previous physician swore would never happen.

She is one of many people who have CRPS and who have taken part in a program that I run with Robert J. Schwartzman, MD, Drexel University College of Medicine in Philadelphia. Currently we are collecting data on an outpatient “awake” ketamine protocol for patients who have tried more conventional therapies without long-term benefit.

Elena King-Stoltz, who has full-body CRPS, had tried Bier blocks, spinal blocks, an intrathecal pump and other treatments since being diagnosed in 1992, but still experienced high levels of pain. She has been on the ketamine program for almost a year now. “I mowed my lawn for the first time in 10 years,” she says.

The program can be done on both an inpatient and outpatient basis. Before beginning either therapy, we do laboratory, cardiac, and psychological evaluations.

While we have had NO significant adverse events, we have been extremely cautious in screening patients with concurrent medical problems. The two most common reasons a patient would be eliminated are a psychiatric history of note (apart from the depression due to chronic pain) and cardiopulmonary disease.

Hospital-based infusions

The hospital-based infusions require a five-day in-patient stay. An intravenous (IV) line is inserted and the patient is started on a dose of 20mg of ketamine per hour, which is increased by 5mg increments to a maximum of 40mg per hour. As an adjunct, we are using clonidine, 0.1 mg (per FDA). We use small doses of lorazepam (Ativan®), 1-to-2 mg, for any dysphoria or hallucinations. Other medications are utilized to treat such problems as nausea and vomiting, headache etc.

The most common adverse event is fatigue. There have been some instances of short-term hallucinations related to dosage, but these have disappeared within an hour of lowering the dosage.

The accumulated data over three years has heretofore shown no significant lasting adverse events. Dr. Schwartzman and I have treated more than 100 patients. We had one patient with bradycardia in which the 5-day infusion was terminated.

Following discharge from the hospital, patients enroll in an outpatient infusion program of varying degrees and lengths. Initially, they are treated 1-to-2 times a week for a 4-hour IV infusion of 100 mg to 200 mg of ketamine. The frequency of outpatient treatments is weaned over time. Currently, we are using a protocol that consists of two outpatient treatments a week every other week for one month, then one treatment every other week for a month then monthly for three months then every three months. This protocol is merely a general guideline however and varies at times. Then one outpatient treatment the following month, after which we reassess the patient. Outpatient visits are then monthly, or at 3-month intervals, depending on the patient.

Outpatient protocol

Alternatively, the patients are given therapy only on an outpatient basis. They are given 10 daily treatments initially in two consecutive weeks in an outpatient infusion suite. They are administered from 70 mg-to-200 mg of ketamine per day in titrating doses over the 10-day timeframe and then they are placed in the outpatient program as described above. Again, there have been few adverse events and most of them have been dosage related. As before, the most common is fatigue on the day of the infusion. There have been NO long term side effects. Most patients are given 2 mg of midazolam and sleep through the procedure. Other medications are given as needed for side effects such as nausea and headache.

Ms. King-Stoltz, an exception to the aforementioned protocol, does the outpatient protocol once or twice a week. She spends 4 hours in the hospital and says she has no serious side effects. She is a little tired afterwards, but it goes away quickly. Ms Curiale found the treatment very draining and the drug left her “loopy” but she noted results from the beginning.

Results

The results obtained so far have been promising. We measure outcomes using pain scales, physical exams, psychologic profiles, and activity increase.

Rough estimates show approximately 85% of those undergoing the hospital stay protocol have improvement measured by increased activity, reduction of medication, and improved lifestyles. For example, some have discarded wheelchairs, walkers, and canes, and others have increased activities or have returned to work. Those beginning with outpatient therapy have similarly improved, but to a lesser degree (approximately 60% to 70%). All patients receive the follow-up outpatient boosters.

Ms. King-Stoltz says that although she still has pain, it is manageable and she is doing things she hadn’t done for years, such as walking and doing chores around the house. The ketamine treatment has given her back some degree of independence.

The one major problem with ketamine infusion therapy is the inability to “hold” the improvement achieved by the five-day inpatient or 10-day outpatient regimen. Without the infusion boosters, the patients almost universally return to their pre-treatment state. It is therefore necessary to combine the initial start-up therapy on an inpatient or outpatient basis with follow-up boosters in order to maintain the level of pain relief.

Virtually all participants in the program have continued the out-patient ketamine infusions. None of the patients treated by Dr. Schwartzman and me have discontinued due to side effects. More study will be necessary to determine such factors as dosages and long-term time frame to be treated.

Studies are currently ongoing to combine other drugs on an outpatient basis with ketamine to try and “hold” the improvement for a longer duration. The concurrent use of sympathetic blocks and ketamine is being studied. Lifestyle change, dietary adjustment and physical therapy are all being stressed as improvement is noted. The use of nutritional support vitamins, neutriceuticals, and counseling is also under review.

Most patients get sustained relief for 4 to 6 months. Some have been fortunate enough to get a longer term benefit.

I believe that ketamine provides the best chance of improvement from all therapeutic modalities available today. While it involves the use of medications besides ketamine, the use of IV drug therapy, a great deal of time and effort on the part of the patients and their families, it has certainly shown great promise in patients who do not find relief from other treatment.

Certainly the drug is not for everyone—approximately 20% of people show little to no improvement. However, some have benefitted dramatically. We continue the treatment program in the hope that more patient evaluations and the use of concurrent medication can affect a more long-lasting improvement in individuals with multi-limb or multi-system disease.

For now, however, we at least appear to be heading in a positive direction, helping many individuals who, up to this point in time, have received no or little benefit from the more “conventional” treatment modalities.

Philip Getson, D.O. is a Board Certified Family Practitioner and an Associate Professor of Neurology at the Drexel University College of Medicine in Philadelphia. He can be reached at 856-983-7246 or PGetson@aol.com.

RSDSA Review, Spring 2006.

Updated October 7, 2008

This information  can be found at www.rsds.org

 

 

 

 

 

 

 

 

 

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