Infusio Clinic in Germany

I've been told that it would be in my best interest to make another trip back to Germany for further treatment on my CRPS.  It looks as though something may have been left or possibly something broke off in my last incision on my back; which has allowed or caused the CRPS to return. 

Such a frustrating delima.  On my first trip to the Infusio Clinic in Germany we were able to get my back pain free which so wonderful.  Now to think that something even minor left in the incision can cause the CRPS to come back and come back hard is mind boggling!

The Infusio Clinic in Germany gives you the utmost care, one on one session with the Medical Director, personalized service, individual appointment times (unlike the US), door to door pick up and delivery (to and from appointments), they arrange for a fully furnished apartment while you're there and they also arrange for your plane fare.  They want it to be more of a spa setting rather than a sterile clinical setting where patients get up tight and won't relax and let their guard down.  It is completely different than anything that you can find in the US, and their treatment options are far wider than anything that you will see here too.  It is absolutely amazing.

They have handled many cases of RSD/CRPS, fibromialgia, and other chronic pain syndromes.  If anyone is interested in getting additional information on their clinic or possibly going to Germany for treatment please contact:  info@infusio.org.  Daniel Beyer is a great contact and he can arrange a Skype call with the Medical Director.  Just let them know that "Traci" referred you.

I'm personally in the middle of weighing out all of my options to see if I really need to go back to Germany at this time or if I should stay in the US and continue treatment here.  I have to make a decision quickly as the clock is ticking and ideally they would like me on a plane this weekend and there on Monday, June 4th or there about...  if I decide to make the trip.

For others suffering with this awful disease that have tried other traditional treatments and have had no success...  I would highly suggest contacting them to about taking a trip back to Germany for treatment and I think you will be very surprised by what you learn and what a huge difference they can make in your life!

Information About RSD and CRPS

WHAT IS REFLEX SYMPATHETIC DYSTROPHY? In 1993, the name of reflex sympathetic dystrophy was changed to COMPLEX REGIONAL PAIN SYNDROME (CRPS) mainly for research purposes and to avoid confusion with the many labels that have been attached to RSD in the past. CRPS type one is formerly known as RSD and CRPS type two was causalgia. CRPS type one (formerly RSD) is a debilitating disease which involves the skin, nerves, blood vessels and bone. The sympathetic nervous system reacts to a stimulus for example, an injury. Blood flow may be affected in reaction to a burn, cut, or severe temperature changes. To prevent you from further using an injured limb, the limb swells. Sometimes, and no one knows why, an abnormal or prolonged sympathetic reflex begins in a limb as reaction to a trauma. The sympathetic nerves become overactive and can cause a variety of symptoms that may cause debilitating consequences. There can be many symptoms, but the most common one is burning pain. Some of the other symptoms include: swelling temperature changes color changes diminished motor function severe sweating These symptoms usually happen in a limb but can occur in other body parts (i.e. face…)  Symptoms may vary with each individual who has CRPS type one (RSD). COMMON CAUSES OF CRPS Type 1: Trauma (often minor) i.e. soft-tissue injuries, fractures heart disease (caused by inadequate blood supply) Spinal cord disorders Cerebral lesions Infections Surgery Repetitive motion disorder (RSD) or cumulative conditions causing conditions such as carpal tunnel syndrome. In many cases, a definite cause of CRPS Type 1(RSD) has never been found. It is not known why these factors cause CRPS but there are many hypotheses that are the subject of research around the world even today. CRPS Type 2 (formerly causalgia) CRPS type two (causalgia) is defined by burning pain, allodynia, and onset usually occurs after nerve injury but it may be delayed.  The most common nerves involved are the median, sciatic, ulnar, tibial and tibia. The burning pain is constant and exacerbated by: Light, touch, stress, temperature, movement of the limb, or emotional disturbance. Abnormalities in skin temperature and blood flow may occur as well as sudomotor dysfunction. Dystrophic changes may occur in the skin, hair or nails. SPECIFIC SYMPTOMS OF CRPS The main difference between CRPS type 1 (RSD) and CRPS type 2(Causalgia) is that Type 2 is caused by a nerve injury. The symptoms of both diseases are identical. There are four cardinal signs that indicate CRPS Type 1 and 2: PAIN is constant and characterized by burning. The non-relenting pain is enhanced with every movement. SWELLING is sometimes localized, but often unrelenting, and progressive. Swelling intensifies the pain and promotes stiffness which can be the beginning of atrophy and deformity. When tissue is injured or inflamed, excess fluid enters the tissues from damaged blood vessels within these injured tissues. If the veins cannot remove all of this fluid, the part swells (edema). However this swelling is usually only temporary, because the tissues heal and the blood vessels no longer leak excessively. Swelling is one of the symptoms of RSD. Early in the course of the disease, this inflammatory process causes edema. The swelling in RSD may exist far longer than it would take normal tissue to heal because RSD: Prevents healing Causes constant inflammation May cause dilation of the arteries which will cause more fluid to leak, and May cause the veins to contract, which also prevent the normal removal of non-protein fluid from tissues. It is pretty easy to see that the edema of CRPS may last for long periods of time. STIFFNESS like swelling is progressive resulting in less motion of the joints, which again, results in increased swelling and pain.  This in turn, can produce further deformity and joint changes. DISCOLORATION indicates circulatory changes that diminish the nutrition of the tissues of the skin, ligaments, bones and tendons. The result is thin, shiny skin, pencil-like fingers and changes in ligaments. This further contributes to stiffness and pain. CRPS in the upper extremities had been classified in the following five ways, based on the location and intensity of symptoms: CLASSIFICATION EXAMPLE minor causalgia fingertip crush, localized burning, pain, swelling, stiffness and discoloration minor traumatic dystrophy result of a crush, sprain or laceration to the back of the hand which may produce pain over more than one nerve distribution shoulder-hand syndrome result of a crush, sprain or laceration to the back of the hand which may produce pain over more than one nerve distribution major traumatic dystrophy the most severe non-specific nerve injury in response to surgery, open fracture or disease which may affect the entire extremity major causalgia severe muscle reduction appearing as early as one week following trauma to a major mixed nerve (most commonly the median nerve) often affecting the entire extremity PHILOSOPHY CRPS is frequently dismissed by health professionals for many reasons including: They don't understand the diagnosis and/or they are not familiar with the disease. They understand the diagnosis but lack experience in how to treat it properly. Many think that the patient is pretending to be ill. CRPS is thought to be hopeless and there is no cure. (There is hope!) CRPS is purely psychological and that it is not a medical condition, i.e. "It's all in your head". (This is a myth.) Many people who work within the health care system dread accepting a patient with CRPS because effective treatment requires an ongoing, almost daily assessment of the condition to develop the proper regimen. It is far too time consuming for most doctors / clinics to adequately care for CRPS patients. Due to the nature of CRPS, the condition can quickly change for better or worse for reasons that are not fully understood. Therefore it is necessary to schedule evenly spaced treatment sessions in order to benefit the patient. The health care provider must address the plan of care very carefully once the diagnosis is made and must thoroughly customize therapy for each patient. All individual characteristics (psychological, social, and physiological) must be taken into account during therapy and treatment of this disease / syndrome. Communication between the family members, health professionals, and the patient must be clear, ongoing and become well established. It is common for the patient to have failed in a previous program if a positive, creative, caring relationship was not established. If either the patient or the therapist senses a communication problem, it is far better to acknowledge that another clinician may be of greater benefit to the patient's progress or to get open communication as soon as possible. DIAGNOSIS Diagnosis is determined through X-rays, three phase bone scan, skin tests, joint fluid analysis, and thermo graphic studies. Sometimes the phentolamine test is used. Thermography is more sensitive than any other diagnostic tool when diagnosing CRPS according to Dr. H. Hooshmand. He states that diagnosing CRPS without thermography is like diagnosing a heart attack without an EKG. It should be noted that the CT scan, EMG, and MRI studies may be normal during the first stage of CRPS. Along with the tests, signs and symptoms of CRPS are taken into account. All the pieces of the puzzle must fit to render a proper diagnosis. NOTE: In some parts of the US, thermography studies are available. Some doctors are used to dealing with them to see the actual heat related changes, while other doctors are still opposed to them because they don’t have all the information to know how valuable they can be when working with CRPS as a diagnostic tool. We are trying to get better diagnostic tools which will mean earlier diagnosis of CRPS and faster, more efficient treatment. WHAT CAN BE DONE??? In the first place, the task is to eliminate or treat all possible causes. If there is no known cause, or if with the removal of the cause, the symptoms do not satisfactorily disappear, then there are only the symptoms of CRPS to be treated. SUCCESSFUL TREATMENT OF CRPS is dependent on: Early diagnosis. If diagnosed early, the prognosis is very good. Begin treatment of the underlying cause, if there is one. If not, then focus on the treatment of the CRPS process. Effective sympathetic blocks by blocking nerve impulses with anesthetic agents used in severe pain. Blocks may provide permanent or temporary relief. Sustained physical therapy to maintain flexibility, strength and range of motion. No use of the limb can result in atrophy and eventually not being able to use the limb. Progressive management techniques, if necessary for example, biofeedback to control pain and blood flow, pain management techniques, counseling, etc. MAKING CIRCUMSTANCES FAVOURABLE It is the task of the practitioner to give advice concerning the limits of the patient's endurance. The outcome of the treatment is not only in the hands of the doctor or therapist but also in the hands of the patient him/herself. Listening and following advice regarding the stress applied, in relation to the current stress tolerance, (of the affected extremity) becomes a problem that reoccurs in treatment. The patient and the doctor can work together towards the common goal and good of the patient’s outcome. Too much or too little exercise of the arm or leg is not good. It often requires an adjustment of lifestyle and sensible handling of the burden of the affected arm or leg. Rehabilitation is appropriate and must be ongoing. One must make the circumstances for recovery as favourable as possible. Due to the mysteries surrounding CRPS, problems can arise concerning the patient's disabilities, social functioning, employment, relationships, and the environment. These problems also need to be addressed. REHABILITATION As part of the treatment, if recovery fails to materialize, and if the patient is limited by circumstances in everyday life i.e. getting around, then special steps may be necessary. A referral to a rehabilitation specialist is always sensible in this case. We know that a minority of CRPS patients will be left with disabilities and that treatment may be insufficient for them. Patients and doctor(s) must keep an eye on the treatment, its progress and make changes if necessary. If recovery is complete, people can, in principle, function fully again. Even with incomplete recovery, work is often possible but one must take into account chronic pain, and the decreased ability to bear weight. THE SECOND OPINION For the patient, there is always the possibility of asking for a second opinion. This should be done in consultation with the doctor, but permission is not necessary. A second opinion certainly does not mean that the doctor who gives it will then begin treating the patient. However, a second opinion is reasonable in cases of CRPS. RSD NETWORKS Complex Regional Pain Syndrome is an illness that can truly disrupt people's lives. Recovery may take a long time. If recovery does not seem possible, permanent disability can be the result. Patients often feel misunderstood and unable to cope with specific problems in their immediate environment.  If this happens it is extremely important to reach out to others that have CRPS or consider seeking help from a licensed therapist.

Please forward this information to your friends and others to keep it going.  This is the only way that we will get the word out on CRPS!  I need YOUR help to reach as many people as possible - to try to reach the goal of raising a total of $1Million.  Yes, I know this will take time, but it is greatly needed for research on CRPS in the US and to work with the FDA to get treatments approved that are already working & approved in other countries like Germany.  Please contact me at:
Traci Patterson
14242 Raintree Rd.
Tustin, CA 92780

How Little US Physicians & NP Know About CRPS...

I was hopeful yesterday when I got the call to go to a new clinic that practices both "Eastern" and Traditional medicine.  Actually, they really lean towards "Eastern Medicine" or what they would call Alternative Medicine.

I thought this would give me some type of treatment close to what I received in Germany, since at this point we are very confused as to how my back incisions were able to get to much better in Germany and now the scar/incision on my spinal area is getting worse.  I had an ultrasound that showed possible findings of something metal or plastic in the incision.  Then that was followed up by a CT Scan, and that found nothing.  Yes, it is very confusing.

Needless to say, I arrive for my appointment, provide them with the typical insurance card and ID.  Then I start the necessary paperwork that I have been asked to complete.  I write down several times that I have CRPS and I even write down the specific areas that it was diagnosed in.  When I was half way done with all the paperwork I was roomed and met the Nurse Practitioner (NP).

As I have one person giving me injections into my left foot / ankle scars that hurts to the point that I have tears rolling, I'm ouching, I can't stop shaking due to pain and my foot looks like a mine field because it is bleeding from every place it has been injected.  During this time the NP is telling me that I just need to breath and the Doctor that was doing the injections told her the breathing may help them, but he guarantees it won't help me!  It was very obvious by what the NP said and did that she had no idea what she was dealing with.

Then it was her turn to inject my back!  She started off on the wrong foot by pressing sternly against an extremely sensitive area.  Not only did I have to tell her to stop, but the Doctor in the room had to tell her that she was causing me more pain.  He had to stop her multiple times to show her how to even swab down my bad prior to starting the injections...  Keep in mind even the lightest touch causes the greatest pain.  Then when it came to her completing the injections on my spinal area where the scar/incision was - the NP wasn't used to having a patient in pain while she was completing the injections.  I'm sorry, but when you have pain that is due to CRPS on a pain scale it is closer to a 15/10 when these injections are being completed.  She was getting squeamish and kept wanting to stop; well she has to finish or why am I there?  Plus, she was going superficial and the Doctor told her she needed to go deeper than what she was, but she was afraid of hurting me more.

When they finally finished with all of the injections; my back, foot and ankle felt like they had just gone through a war.  I was cold and clammy.  They left the room to give me some time to relax and try to get some control over my pain.  

When the NP did return and she looked at all of the pain medications that I am on she asked me to take extra pain medications prior to coming in next week to get more injections in my foot and back.  What she doesn't understand is that these injections are not going to help me to get through this.  We talked briefly and when I went to check out I looked at the "super bill" that they fill out at every doctors' office and she didn't even write down CRPS as a diagnosis.  Then they wanted to charge me over $450 to be seen for 15 minutes of torture, and keep in mind that I do have insurance!  What am I missing?

I can go back to Germany for about $250 per day for treatment and that includes several hours of treatment time; have a Health care Practitioner that knows about CRPS; have access to Blood Ozone Treatment; Procaine IVs; Ozone IVs; Electro Therapy and more.  Now there are plenty of questions to answer and more rocks to flip over.

Please take the time to forward this blog to your friends and others.  Take the time to subscribe.  I need people that are willing to get involved to keep this information going to teach others what CRPS is.  My goal is to Raise $1 Million to help with the research that is desperately needed for CRPS aka RSD and to help work with the FDA to get them to give us Authorization to utilize treatments that are working in other countries such as Germany.  Feel free to contact me at: 
Traci Patterson
14242 Raintree Rd.
Tustin, CA 92780

or

winthewaragainst.crps@gmail.com

A serious disease needs serious help for research!

As a patient of CRPS since 2008; an individual that has gone through all of the "traditional" treatments and even many of the "non-traditional" treatments it boggles my mind how people can ignore CRPS as if it doesn't exist!

Open your eyes... in the United States alone there are statistics showing that approximately 1.2 Million Americans have CRPS!  This figure includes everyone from children; who don't and can't understand what has happened to them that is causing them immense pain; to adults that also can't understand why in this day and age of technology and advances in medicine - that more research is NOT happening to give us options, treatments, etc... 

People pay attention to those disease that they know and understand...  Trust me, I am not taking anything away from these other diseases such as Cancer, especially since I have had more than one family member that has had cancer.  Most recently I've had a close family member that was diagnosed with stage 3-4 Metastatic Melanoma that was in her Lymph system.  She opted not to do Chemo Therapy or Radiation... instead she went with "Alternative Therapies"... went outside the U.S. to received treatment and within 2 weeks she was tested and had zero cancer cells left in her Lymph system or her body!

Although rapid research is not happening on CRPS in the United States - it is happening in other Countries such as Germany and Europe.  Now it is time of the United States and the FDA to step up to the plate to make a difference for those of us that so desperately need it!

As I've said previously, CRPS is one of the most painful, life changing diseases / syndromes that is out there.  It a matter of one (1) doctor's appointment and hearing those words, "I don't know how to tell you this... (pause)... you do have CRPS" - this changes your life, the way you live it, and the lives of your entire family too.  The sleepless nights, nights that you cry yourself to sleep due to the sure pain that will not let up no matter how much pain medicine you take.  Your spouse or significant other watching you day in and day out in pain, not being about to help you, feeling helpless and leaving them with a sense of loss too.  This is a cruel disease that doesn't discriminate!

I'm asking for anyone that takes the time to read this to consider donating to the cause to help raise the funds assist with the much needed research in the United States, the progress we need with the FDA and assistance with other CRPS patients.

Please contact me to discuss CRPS or to donate towards the cause.  I can be contacted at: Winthewaragainst.crps@gmail.com  or contact me via snail mail at: 
T. Patterson
14242 Raintree Rd.
Tustin, CA 92780

Q & A on CRPS

Fact & Fiction
Complex Regional Pain Syndrome (CRPS) is poorly understood by patients, their families, and healthcare professionals. In some cases the condition is mild, in some it is moderate, and in others it is severe. We have compiled a list of some of the common misconceptions about this syndrome followed by the facts.

CRPS Fact Sheet

• Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic pain syndrome characterized by severe and relentless pain that affects between 200,000 and 1.2 million Americans.

• CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. This syndrome may follow 5% of all nerve injuries.^1,2

• Minor injuries, such as a sprain or a fall are frequent causes of CRPS. One characteristic of CRPS is that the pain is more severe than expected for the type of injury that occurred.

• Early and accurate diagnosis and appropriate treatment are key to recovery, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.

• Symptoms include persistent moderate-to-severe pain, swelling, abnormal skin color changes, skin temperature, sweating, limited range of movement, movement disorders.

• CRPS is two to three times more frequent in females than males.

• The mean age at diagnosis is 42 years. However, we are seeing more injuries among young girls, and children as young as 3 years old can get CRPS.
  
  
• This is not a psychological syndrome, but people may develop psychological problems when physicians, family, friends, and co-workers do not believe their complaints of pain.
  
  
• Treatments include medication, physical therapy, psychological support, sympathetic nerve blocks, and/or spinal cord stimulation.

1. Loeser JD. Ed. Bonica's the management of pain. 3rd Ed. Philadelphia, PA: Lippincott, Williams, & Wilkins; 2001:388-411.

2. Plewes LW. Sudek's Atrophy in the Hands. J Bone Joint Surg. 1956;38:195-203.

Updated June 17, 2011

If you are recently diagnosed with CRPS I truly hope you find the information you need to make some good decisions on your care and how to make the adjustments in your life to still learn to live life to its new full potential. You will have to make some compromises and some big adjustments, but the most important thing is to keep a positive outlook and reduce the stress in your life. Stress increases pain!!! That's a fact when it comes to CRPS!

I hope that family members and caretakers will take the time to get educated so that they will understand more about what you are going through and how to care for you better. Awareness of CRPS or RSD (reflex sympathetic dystrophy) is severely lacking in the general public, but where a lot of damage has been done is in the lack of knowledge that exists in the medical community and in battling Workman’s Compensation to get timely and effective early treatment to help lessen the severity and possibly thwart a lifetime of pain.

Most people diagnosed within the first three months, after the onset of CRPS/RSD, if treated aggressively, have a chance of lowering the extent of pain they will suffer and also have a much greater chance of possibly being treated into remission. Yes that's right... remission is possible, but the odds are greatly increased with an early diagnosis and treatment within the first three months.

That's why having the medical community informed about the symptoms can make the greatest difference. Your understanding and early diagnosis can mean the difference in quality of a person’s life, like no other means currently available can.

Thank you for taking the time to come here to take the first step to learn more about this awful disease/syndrome and I hope you come away with the means to prevent even one more person from having to come here to find a way to make their life more manageable.

To the people in the CRPS/RSD family who are here to find a way to make their lives easier, your input is essential.  Please feel free to contact me with input, questions or comments.  I am more than happy to get back to you.

For those of you that have come here to gather information on CRPS and to see what are needs are…  I am seeking additional funding to push forward the much needed research in the United States on treatments such as Stem Cell Therapy (utilizing the patient own Stem Cells); Ozone Blood Therapy; Procaine Therapy; Ozone Therapy; Electro Therapy; etc…  I also need funding to work with the FDA to get approval for some of these alternative treatments, alternate medications, and ways to assist patients to get the much needed treatment they need! 

Please contact me at:  Winthewaragainst.crps@gmail.com

Or

T. Patterson

14242 Raintree Rd.
Tustin, CA 92780

During this process in January, 2008 I was sent by my Neurologist to see a Pain Management Doctor to either confirm or deny to possible diagnosis of CRPS.  After many questions, and an exam the doctor said he had some good news and some bad news.

I was ultimately diagnosed with CRPS.  I had the following symptoms: temperature changes in my left foot (i.e. it was significantly colder than my right foot), range of motion issues (although I had been in PT off and on for several years), sensitivity to touch, stabbing pain, a grain of rice hitting my foot in PT felt like a knife stabbing me, a breeze or air from a duct hitting my foot hurt, sometimes it feels as though someone has put gas on my foot and set it on fire, discoloration, etc...  I will never forget that day – as it was the beginning of a completely new life not only for me, but for our whole family! 

When you get this diagnosis it is extremely scary, because first you’ve never heard of it, then your told that this is a disease that has no cure and that we have to work together to try to put it into remission… That is a very scary thing to hear especially because you have never heard of it and despite the doctor’s best efforts to explain it you cannot understand why your central/sympathetic nervous system went crazy… you refuse to believe that your body can fail in this manner. So then you get home and Google it… the information provided brings tears to your eyes. After the initial shock dissipates then reality sets in… you are going to deal with chronic pain for the rest of your life. So then you frantically search for any and all treatment methods to help reduce your pain because you already know the likelihood of being pain free is very slim.

So doctors begin to shove pills of all kind down your throat, send you to physical therapy, complete regional blocks, sympathetic blocks (13 to be exact and the last one caused my Adrenal Glands to shut down for a short period of time and to be hospitalized…), HBOT (hyperbaric oxygen therapy – 31 treatments with no change), meditation, visualization, Spinal Cord Stimulators (x3 the first 2 were faulty and the 3^rd one was explanted in Feb., 2012), and a lot of research. 

Unfortunately, with the surgery to explant the faulty Spinal Cord Stimulator and to implant the new Spinal Cord Stimulator; Sept. 2011; it caused the CRPS to move from my left foot/ankle into my back.  Also, during this surgery my Neurosurgeon noticed an abnormal build-up on scar tissue around the paddle that holds the electrodes (this is placed between the vertebrae and the Dura of the spine).  He stated he had never seen anything like this before and it took him quite a while because he actually had to get scar tissue off of the Dura that protects the Spine.  In a matter of 1 month the CRPS spread from the incisions to the surrounding area in my back.  It quickly moved and my doctors were having a very difficult time figuring out how to stop the spread of the disease.  Plus, with the spread of the CRPS I have had increased pain and they were unable to control the increase in pain.  (Just the pressure of a shirt against my skin hurt, sitting back against a chair or sleeping on my back is extremely painful and all I have to help with this pain right now other than my normal pain meds are Lidocaine Patches that can only be used every 12 hours…) 

Since this time, my Neurosurgeon has come across some new information that pertains to me and the odd build-up of scar tissue that he found in the last surgery.  There have been previous cases of patient with Spinal Cord Stimulator that had a “Rare Phenomena” where scar tissue built-up impeded on the spine causing paralysis!  There are certain markers that the previous patients hit prior to this happening, and unfortunately I was hitting these markers too.  Therefore, it has been decided by the Neurosurgeon, Pain Management Doctor and us (my husband; Duane; and I) that the current Spinal Cord Stimulator must be explanted before any chance of paralysis can happen on top of what I was already dealing with!

 The explant of the Spinal Cord Stimulator was going to be a delicate procedure, removing any scar tissue from the Dura surrounding my spine (which will be a very delicate too), and we asked the that the Anesthesiologist use the proper protocol with a medication called Ketamine to prevent any further spread of this awful disease.  I was fortunate that the Anesthesiologist was willing to utilize Ketamine and it did keep the CRPS from continuing to spread.  

I was in the hospital for 2+ days for a procedure that is normally done Out Patient, but due to the volatility of my CRPS they could not control my pain outside of the hospital. 

Since there was nothing more that could be done for my or my continuing expansion of CRPS; I had Skyped with a health care practitioner in Germany several times prior to the surgery.  It was decided that I would fly to Germany after the surgery for Stem Cell Therapy, Blood Ozone Therapy, Procaine Therapy, Body Work, Lymphatic Work, Electro Therapy, Procaine and Ozone injections into the CRPS areas that has scars.  I left for Germany 13 days post-op and I was supposed to stay for 2 weeks, but then I spoke with Phil, the Medical Director and he told me I had the worse case of CRPS that he has treated and it was more volatile and sensitive than any other case.  Therefore, he asked if I could stay at least two weeks longer...  I did.  We continued with the same treatments and I have to say that it took everything within me, every fiber, all my strength and all my will to make it through the treatments on a daily basis!  When I left to come home it was the first time since 9/2011 that I could touch my entire back!  My left foot and ankle was about 45-50% better, but I was told that it would be the last area to go into remission.  Plus the Stem Cells that were injected back into me on March 14th will continue to work for 6 months.  

     Unfortunately, approximately 2+ weeks ago the incision on my spine where the Spinal Cord Stimulator was removed is getting sensitive again.  I spoke with Germany to find out what could be happening.  Phil was very concerned that something could be in the incision.  He asked if I could get an Ultrasound.  I did get and Ultrasound and sure enough it does show something, but due to Shadowing it will now allow the Ultrasound to view what is inside the incision.  My Neurosurgeon is upset because he insists there can't be anything left in the incision, my Pain Management Doctor has no idea what to do nor say at this time.  So, I have an appointment with my Primary Doctor to set up a MRI to see exactly what it is.  We are extremely doubtful that I will be able to get my Neurosurgeon on another surgeon to remove whatever is in the incision...  Thus it may require an additional trip to Germany to have the mystery item removed from the incision, get further treatment and return better off.  Time will tell.

   Please remember to pass on this blog to friends or others.  This will be the only way that the work and knowledge of CRPS will get out!  If you would like to contact me or help to donate towards our goal or raising $1 Million for research and funding to get the FDA to approve current treatments that are working in Germany and other Countries.  Right now in the United States there is NO Cure for CRPS!  I can be reached at:  T. Patterson 

                                                                                                              14242 Raintree Rd.

                                                                                                              Tustin, CA 92780

Consultation Area in Germany Clinic

CRPS is a progressive disease of the Sympathetic Nervous System whose pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body.

CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.  This is the pain scale that is utilized in doctors offices and hospitals; when they ask if your pain is 0-10.

There are FOUR Main Symptoms/Criteria of CRPS:

1. Constant chronic burning pain (includes allodynia - extreme sensitivity to touch, sound, and vibration)
2. Inflammation (this can affect the appearance of the skin, bruising, mottling, etc.)
3. Spasms-in blood vessels and muscles of the extremities
4. Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc.)

There are a great many additional symptoms that can also occur over the course of the disease. Not all patients will have all symptoms and symptoms may change over time due to the stage the patient is in, the medications the patient is on, and/or the treatments the patient is receiving.

Sometimes patients in the US will see 10 - 50+ doctors before they are properly diagnosed with CRPS.  This is a very difficult disease to diagnosis especially if you are not referred to the propper doctors that are experienced in this disease.

WHAT PARTS OF THE BODY ARE INVOLVED?CRPS is a multi-symptom condition typically affecting one, two, or sometimes even all four extremities. It can also be in the face, shoulders, back, eyes, and other areas of the body as well. CRPS is an involvement of nerves, skin, muscles, blood vessels (causing constriction, spasms, and pain) as well as bones.

The Orthopod website describes this aspect very well:
"Sympathetic nerves are responsible for conducting sensation signals to the spinal cord from the body. They also regulate blood vessels and sweat glands. Sympathetic ganglia are collections of these nerves near the spinal cord. They contain approximately 20,000-30,000 nerve cell bodies. CRPS is felt to occur as the result of stimulation of sensory nerve fibers. Those regions of the body rich in nerve endings such as the fingers, hands, wrist, and ankles are most commonly affected. When a nerve is excited, its endings release chemicals. These chemicals cause vasodilation (opening of the blood vessels). This allows fluid to leak from the blood vessel into the surrounding tissue. The result is inflammation or swelling leading to more stimulation of the sensory nerve fibers. This lowers the pain threshold. This entire process is called neurogenic inflammation. This explains the swelling, redness, and warmth of the skin in the involved area initially. It also explains the increased sensitivity to pain. As the symptoms go untreated, the affected area can become cool, have hair loss, and have brittle or cracked nails. Muscle atrophy or shrinkage, loss of bone density (calcium), contracture, swelling, and limited range of motion in joints can also occur in the affected limb. These are in part caused by decreased blood supply to the affected tissues as the condition progresses." (Source: A Patient's Guide to Pain Management: Complex Regional Pain Syndrome)
CRPS - WHAT DOES IT FEEL LIKE?I was asked recently at my Doctors office by a visiting intern, "What does CRPS feel like?" This is a question I get asked quite often by other individuals as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question now and again and you have to think of your answer by the way the person asked. How interested are they in your answer and how detailed an answer are they looking for? If they are asking what is CRPS pain is like in comparison to other diseases you give the McGILL Pain Index answer, "CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!". If they are asking as a friend and you don't want to scare them away you simply say "It is the most pain I have ever experienced, it hurts constantly."

After all, many patients have already lost a great many friends because of the disease and they don't want to lose more. If they are a loved one you try and protect them. You don't want them to know how bad it is. You don't ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, "I am fine. It is nothing I can't handle." Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. If you have only had it for a year or two you aren't as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more.

I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again. It can actually be difficult to completely let down those protective barriers to reveal exactly how much pain we are in and many times our Drs, especially new ones, don't realize just how bad our pain actually is.

So, having said that, what does CRPS pain actually feel like? Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better. CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc. What does it feel like? Well, if you had it in your foot and ankle, imagine your foot and ankle was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week - for the most part... it is a sharp, burning pain.  There are times it turns into a cold CRPS foot where it will turn purple; yes purple; it is ice cold to the touch and then for some unkown reason my foot and ankle goes back to the sharp burning pain.  As for my back that is a different story.  It hurts so bad that I am unable to sleep on my back, I have to sleep on my side.  The area on my back is a sharp, burning pain.  Sometimes it starts out with a prickling feeling and then it will move onto the hot burning feeling.   Sometomes I sit there and am amazed that no one else can see all thises changes with my body.

The second component to CRPS is what is called Allodynia. Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same foot, ankle and back now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia! Picture getting pretty vivid? Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about. Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain. In addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer. Of course there are also the temperature changes, feeling of knives going through your foot, ankle or back - and many other awful painful changes that your body goes through.


Today I wanted to give you an idea of what CRPS really was, what a typical patient goes through and hopefully answer some questions for you on this awful disease / syndrome.  I hope that I was able to do that.

Please share this blog with your friends and keep sending it along.  This will be the only way that the word will get out about CRPS and the tremendous need that there is for research and proper treatments!

If you want to contact me or send something or a dontation to help meet your $1 Million goal feel free to contact me at:  T. Patterson
                                              14242 Raintree Rd.
                                              Tustin, CA 92780

I commit to anyone that wants to send funds to assist with Research and assisting patients with treatment - I promise that all funds will be sent to the appropriate funds and assist with getting the FDA to approve the treatments that are already working in other countries such as Germany.

Living With CRPS - Tuesday, May 1, 2012

January, 2008 I was officially diagnosed with Chronic Regional Pain Syndrome (CRPS) by a Pain Management Doctor that is also an Associate Professor at a teaching University.  He specializes in this disease / syndrome and after he gave me the news he also told me that at this time there is no cure for this disease, so we will work together to put this disease into remission. 

At the time it was only in my left foot and ankle; I'm not sure how I can say only when that was enough to stop my life as I knew it.  As a matter of fact it came to a quick halt!  The pain that you endure this this diagnosis is hard to describe...  in the beginning it starts out with a very sharp, burning sensation.  It is a pain that is disporportionate to the injury itself.  As it progresses you have temperature changes in the affected limb / my left foot.  My left foot got to the point where the doctor couldn't even get a temperature read on it, but my right foot and ankle were totally normal.  Then my Pain Management Doctor started setting up what they call "Lumbar Sympathetic Blocks". 

I had a total of 13 Lumbar Sympathetic Blocks and they would increase the temperature in my left foot to the same temperature as my right foot, but that would only last a week or so. 

I tried 2 regional blocks and they did nothing.  Years of Physical Therapy did nothing, but make my condition and my pain worse.

Night after night  I would and sometime do - cry myself to sleep due to the continuing pain that is here 24/7.  There is no where to go, no where to hide, it is just a new part of your life.  A part of your life that you wish you never had to deal with.  A part of your life that even your family has to deal with.  This is the harsh reality of this disease.

Next I went out on my own after reading about a doctor on the East Coast that was utilizing Hyper Baric Oxygen Chamber to regulate the blood flow and oxygen levels to the affected areas, and after 20-40 sessions he was able to get CRPS patients into remission.  So, I spoke with his office and found a local clinic in Orange County that offered HBOT, had my Pain Management Doctor write a precription for it and I started treatment.  No, the insurance company wouldn't pay for these treatment, but it was worth a try.  After 32 sessions in the HBOT there was no change and no difference.  Just a lot of money gone.

Throughout all of this time I was put on a medication regiment to stop the nerve endings from firing, help with breakthrough pain, and all of the other neurological pain that goes along with this disease.

I was finally told that I was running out of options and I needed to do a trial for a Spinal Cord Stimulator.  I completed the trial and I looked like the ideal candidate.  Thus, I had a SCS implanted and had nothing but problems with it.  Then the battery was changed on it and that was supposed to fix the problem and it caused further problems.  Finally the entire SCS was explanted and a new SCS by a new manufacturer was implanted.  That was when I found out that I was running in a 5% rare category were scar tissue growes around the paddle of the SCS, it then attaches to the Dura of the Spinal Cord and if left in place it will cause paralysis.

So, with this information the last SCS was explanted on Feb, 2012.  I was out of options for treatment with my Pain Management Doctor, so I headed to Germany for Stem Cell Therapy, Electro Therapy (in the picture above), Blood Ozone Therapy, etc.  Even the treatments in Germany were more than what I expected.  There were days that I was pushed so far past my pain threshold while enduring injections directly into the areas with CRPS that I couldn't stop shaking.  Days where my pain levels surpassed the 10/10 and were closer to a 14/10.  After hours of treatment I would go back to my apartment and absolutely crash and sleep for hours on end, because I had been through so much.  When I came home a month later the CRPS in my back had subsided, and the CRPS in my foot was at 60%.

Injections into CRPS area on Left foot in Germany

I've now been home a month and due to something being left in the incision on my spine the CRPS is starting again in my back.  Yes, you read that correctly.  Just when I thought that my years of pain, suffering, torture and loosing everything was over... it is starting again.  I've had an ultrasound to confirm that indeed there is something within the incision on my back that has to be removed or I could end up with a worse case of CRPS than when I started!

Injections into incision on Back while in Germany

Please, take the time to learn more about CRPS also known as RSD (Regional Sympathetic Dystrophy).  Help me to raise the resources to start the appropriate research that is necessary in the US to start to treat this disease. 

Feel free to contact me via email or snail mail.  If  you would like to send donations I will promise you that they will go towards the research and FDA approval of treatments that are already working in Germany that should be available for the 1.2 million Americans that suffer with this disease on a daily basis.

I can be reached at:  T. Patterson
                                  14242 Raintree Rd.
                                  Tustin, CA 92780

Don't forget to forward or share my blog with others to keep my story going.  Keep your eyes open for a matching twitter account soon!  The more people that are aware of CRPS and some of the awful pain and suffering that it puts children and adults through... the sooner we can get the recognition and the funding to find a cure for this awful disease.