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What type of doctors or test to confirm if my dx is Crps-Rsd, leaking disc or spondylosis?

By Anonymous June 28, 2011 - 9:15am
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I was injured at work. Mri's after 5 mo. show tear in C-6 and focal busal sided partial thickness tear at musculotendinous junction. Disc area at thoracic (above bra strap area) extremly sensitive as the c-6. Did not have any pain management for 8 months and was at level 10 pain for 3-4 mo (symptoms mainly left upper quadrant but was starting on right shoulder girdle and inner elbow as left side). Pain level 5-8 now at 9mo (from waking to sleep-sometime it wakes me) and on Trileptal and pain medication (possible methadone treatment-(do not like that option), limited motion of left extremity and weakness-rarely travels to right side unless over active. Physcal therapist said neck, back, shoulder that of a person in car accident (no car accident-whiplash?)Pain radiates from left side of face/lower jaw, behind left ear, down left side and front of neck (sensitivity to collars), down spin to thoracic, across left shoulder quadrant (from spine-area around shoulder blade), across top of shoulder (radiating 2-3 inches toward chest, across shoulder girldle, bicep (inside and out), down arm to fingers, swelling inner elbow, swelling left side of breast with pain in muscles wraping from breast, under arm to below shoulder blade. Bone scan only shows mild to minimum multilevel thoracic activity compatible with spondylosis. Unsure what medical help I should seek. 3 doctors say CRPS-will not do shoulder surgery until pain under control (I understand why-could make CRPS worse). In addition, pain management doctor said it is possible tear in c-6 could be leaking. Major muscle spasm through out all areas mentioned with feeling of constant pressure, muscles shortening, deep muscle ache, burning, sharp pains. Cannot get shots in spine due to duration and if crps, it could make it worse. What test do I need to confirm leaking disc, spondylosis, or crps? I am lost of unsure what to do. What is prognosis of crps (hate pain medications but do provide relief). This is not the life I want but try to remain positive. Out of work and very scared.

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There are many medications he can try and should try before jumping to methadone, that is some scary stuff. I would ask if there was any other medications protocols you could try before jumping into methadone.

Has he tried any antidepressants? As crazy as it sounds, they do help. I took Elavil for a short period and it helped me sleep and reduced my pain. I developed tachycardia when we raised the dose. What about Lyrica or Neurotin? Has he treated the muscle spasms? I have the vasospasms, where the blood vessels in my arm spasm and It gets very cold. That is called ischemic pain and is the same pain you have when you have an angina or heart attack.

If your doctor isn't listening to you, maybe you should look for another one. That isn't always the easy thing to do because there may not be another one in your area. I live in a large city and was able to find another PM after I had a disagreement with my 1st PM. You should not suffer any reprecussions changing doctors, many are afraid to change PMs because they think it will look like doctor shopping.

About your friends, after you give them information about RSD, you should give them a copy of "The Spoon Theory" (http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf). It will help them to understand you life now.


Here is some information from RSD Foundation.org

Establish a written treatment protocol
Figure 2 illustrates a typical treatment protocol that was designed to rehabilitate the patient in the shortest possible time. Initiate the safest, simplest, and most cost-effective therapies first. If the patient fails to progress in mobilizing the extremity, it is essential to offer the patient a series of 3 sympathetic blocks immediately. The purpose of the sympathetic blocks is three-fold: to treat, to diagnose if the pain is sympathetically maintained and to provide prognostic information. The sympathetic block provides a prognostic indicator if sympathectomy or other treatment modalities would be the next appropriate step. Sympathetic blocks are discussed in detail below.

After the physician has completed a defined course of treatment (e.g. a series of 3-6 sympathetic blocks), it would be helpful to prepare an update report that would document the patient's response to the course of treatment. The report should reflect a basis for further treatment and it should address future rehabilitation needs. Sharing a copy of the update report with the patient will help ensure that all parties are kept informed. Sharing the report with the patient helps keep the patient and physician focused on achieving appropriate therapeutic goals. An update report should address five areas of care:

Procedures (e.g. nerve blocks)
Physical/occupational therapy
Psychosocial issues
New laboratory tests or consults

Medications commonly used to treat RSD / CRPS based on the type of pain include:

For constant pain associated with inflammation: Nonsteroidal anti-inflammatory agents (e.g. aspirin, ibuprofen, naproxen, indomethacin, etc).

For constant pain not caused by inflammation: Agents acting on the central nervous system by an atypical mechanism (e.g. tramadol)

For constant pain or spontaneous (paroxysmal) jabs and sleep disturbances;

Anti-depressants (e.g. amitriptyline, doxepin, nortriptyline, trazodone, etc) 1,6

Oral lidocaine (mexilitine - some what experimental)

For spontaneous (paroxysmal) jabs: Anti-convulsants (e.g. carbamazepine, gabapentin may relieve constant pain as well) 17-19

For widespread, severe RSD / CRPS pain, refractory to less aggressive therapies: Oral opioid.

The use of opioids (e.g. narcotics with names such as Darvon, Vicodin, Loratab, Percocet, morphine, codeine, etc) to treat RSD / CRPS is debated and there are potential hazards. Therefore, in order to ensure appropriate informed consent, it is recommended that the patient sign a doctor-patient "contract." A typical doctor-patient contract can be found by clicking on the link below.

July 7, 2011 - 11:51am

Your symptoms do match RSD but they also match those for an herniated disc. I am confused to why they will not try a stellate ganglion block. I have had 7. The first set of 3 was at the 6 month mark, then the next set of 3 at the 12 month mark and the last one at 2.5 year mark.

My best advice is to educate your self on RSD/CRPS to proptect yourself from uneducated. I carry an information sheet from RSDhope (http://www.rsdhope.org/Showpage.asp?PAGE_ID=4&PGCT_ID=547) and a hospital protocol sheet from RSDS.org (http://www.rsds.org/pdfsall/hospital_protocol.pdf). I have given copies all my doctors and dentist. Another suggestion would be to join an RSD/CRPS exclusive forum. I belong to several and it can be very helpful when you have questions and you always have lots of questions in the beginning.

Good luck and keep writing.

July 2, 2011 - 8:39pm
EmpowHER Guest
Anonymous (reply to Reruho)

The pain management doctor said possible leaking disc (mri shows tear in anterior of disc). I have requested an mri on thoracic (same pain as in c6) but cannot seem to get doctors hear and request. Hoping for herniated disc-I think but doctor still pushing rsd even when bone scan came back clean. How do you feel about the methadone treatment for chronic pain (very scared of this-actually all meds)? Going to my primary dr. to discuss. Cannot take nucynta (major mood swing/hyper/heart pounding-yuk) and hydrocodone does not really help. As for injections, I am not sure why he is against shots. All he said was it was to late and research does indicate the possible good is minimum at this point for the risk. I wrote down the sites you gave me. I am making copies for friends to read because they are clueless as to what is happening to me and less and less understanding (not that I am whining but just unable to participate socially as I once did). Thank you for talking with me. vplants

July 7, 2011 - 8:46am
EmpowHER Guest

Maryann and Reruho, Thank you very much for your comments. The first doctor was a spine/neuro. After reviewing MRI, he quickly sent me to pain managements and said that they would handle it. I chose to see another doctor for my shoulder and he saw the tear in disc on MRI and found another tear on shoulder MRI. PT/neck traction, then I accepted pain management. Reruho, my symtoms match those of RSD but I keep hoping they are not. The reasoning for no shots are it is too late (8mo) and he will not even do shot for disc tear. It may worsen it? That is why they are not doing shoulder surgery. I will suggest to pain management doctor to do other test but it seems life in limbo with no direction to turn. I will check out web sites suggested. Thanks a bunch.

July 2, 2011 - 7:02am

As a patient with CRPS, I can tell you the prognosis is not very good. This is a progressive disorder. At the present time there is no cure. This is a very complex disorder that very few doctors really know how to treat. It is also more than just a chronic pain disorder, the effects are far reaching. The best information will come from these websites: RSDhope.org, RSDS.org, RSDFoundation and rsdrx.com. These sites deal only with RSD/CRPS.

I am not sure why they are not willing to do nerve blocks. Many of us receive lumbar blocks. I will tell you that not everyone is helped by nerve blocks.

The following information about making a diagnosis comes from the RSD Foundation .org website.

Making the Diagnosis of RSD / CRPS

The diagnosis of RSD / CRPS can be made in the following context. A history of trauma to the affected area associated with pain that is disproportionate to the inciting event plus evidence at some time for one or more of the following:

Abnormal function of the sympathetic nervous system, e.g., abnormal changes in skin blood flow, sweating or goose flesh.
Movement disorder.
Changes in tissue growth (dystrophy and atrophy).

Thus patients do not have to meet all of the clinical manifestations listed above to make the diagnosis of RSD / CRPS. Note also that the criteria state "evidence at some time" for the clinical findings. This does not mean that the evidence for the clinical finding listed has to be constant. This explains why swelling, abnormal sweating, abnormal skin temperatures, etc., are not reported by the physician on some visits. Sometimes weather plays a factor or emotional stress or the patient may be in a flare-up or a remission stage. Patients have good and bad days.

The RSD / CRPS diagnosis is precluded by the existence of known pathology that can be explained by the observed symptoms and degree of pain. The pain and symptoms of RSD / CRPS may exceed both the magnitude and duration of symptoms expected from the normal healing process anticipated from the inciting event. There seems to be a small group of patients whose pain following trauma resolves over time, leaving the patient with more of a movement than a pain disorder. There are "grades" of this syndrome described in the literature with symptoms ranging from minor to severe.

Laboratory Diagnostic Aids:

There is no laboratory test that can stand alone as proof of RSD / CRPS. However, there are a couple of tests (thermogram and bone scan) which can be useful in providing evidence for RSD / CRPS.

Thermogram - A thermogram is a noninvasive means of measuring heat emission from the body surface using a special infrared video camera. It is one of the most widely used tests in suspected cases of RSD / CRPS. As noted, detecting an abnormal change in skin temperature in RSD / CRPS depends on many factors. A normal thermogram does not necessarily mean the patient does not have RSD / CRPS. An abnormal thermogram may be helpful when there are minimal objective findings for RSD / CRPS documented in the medical record. Furthermore, certain patterns of abnormal heat emission from the body (e.g. circumferential versus dermatomal changes) are more indicative of the existence of RSD / CRPS than others. The thermogram should be performed at a reputable medical facility. The quality of the test may vary among providers.

Three phase radionuclide bone scanning - the role of the 3 phase bone scan in the diagnosis of RSD / CRPS has been debated and is controversial.

Sympathetic blocks - See below under "sympathetic blocks".

X-rays, EMG, Nerve Conduction Studies, CAT scan and MRI studies - All of these tests may be normal in RSD / CRPS. These studies may help to identify other possible causes of pain; for example, RSD / CRPS plus a carpal tunnel syndrome.
( http://rsdfoundation.org/en/en_clinical_practice_guidelines.html#DIAGNOSIS )

June 30, 2011 - 9:54pm
(reply to Reruho)

I found out I had CRPS in October of 2009. My pain is in my left wrist all the way up to my left elbow. At first they thought I had Carpal Tunnel Syndrome. They sent me to a hand specialist and he examined me. He did an X-Ray and a MRI, but they all came out negative. So he sent me to a pain specialist/antestioligist. He exmained me and discovered I had CRPS. He tried a couple of nerve blocks that gave me hardly no relief at all. So he put a nerve stimulator in to control the CRPS pain. It controls the pain most of the time, but with CRPS there are ups and downs with the pain. They have had to make several adjustments to the stimulator, but that's normal, but I would recommend getting a nerve stimulator.

October 28, 2011 - 3:43pm
(reply to scrapbookcindy)

I am glad you are getting some pain relief. When my RSD/CRPS spread from my wrist/forearm it skipped my elbow and when into my upper arm.


October 28, 2011 - 5:59pm

I am so sorry to hear about your situation. Uncertainty about a prognosis, unrelieved pain and unemployment make for a very heavy burden. You mentioned being treated by 3 doctors and a pain management physician. Have you been evaluated by an orthopedic surgeon or a neurologist?
I think a physician in either of these 2 or both specialties would know what diagnostic tests are needed to make a differential diagnosis.

June 28, 2011 - 12:47pm
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