Robert's fight with RSD (Reflex Sympathtic Dystrophy)

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Website last updated on December 16, 2016.

What is (RSD)-Reflex Sympathetic Dystrophy  ?

RSD describes a condition, a syndrome, which is also known as Complex Regional Pain Syndrome (CRPS). RSD/ CRPS are considered to be perhaps the most painful of all chronic pain disorders. It involves chronic, excruciating, burning pain, pathological changes in bone and skin, excessive sweating, skin discoloration, and extreme sensitivity to touch, among other symptoms.

 I never heard of this before...is this real?

 1.Upwards of 1.2 million Americans are estimated to have some form of RSD/ CRPS.  Approximately 50,000 new cases develop, yearly, it is estimated.

2.RSD is divided into two types. One, called RSD/ CRPS Type I, happens as a result of soft tissue injury, trauma, a fracture, infection, or... where there is no underlying nerve injury. -- RSD/ CRPS Type II refers to cases resulting from major nerve damage. (Type II had previously been known as "causalgia" and dates back to Civil War days.)

3.RSD/ CRPS affects the following: nerves, skin, muscles, blood vessels and bones, simultaneously. -- Motor, sympathetic, DNIC, and the discriminative & effectual pain system.

4.The most common and devastating symptom is excruciating pain which is greatly disproportionate to the injury that caused it. Top pain specialists/ and other experts in the field have stressed that RSD pain is not psychologically-based. It is the result of very real injuries sustained by the individual. These injuries alter some of the genetics. The pain and other symptoms become worse as time goes by, unless it responds to treatment.

5.However, there is no cure, at the present time, for RSD/ CRPS. There are however, cases of remission or adequate control of and lessening of symptoms with treatment. Researchers and doctors have come a long way in the understanding and treatment. And, there are not all that many physicians who have the experience or training to treat RSD/ CRPS.

6.Symptoms often spread from the originally affected area of the body to other parts of the body. Robert has the worst form, known as 'Full-Body RSD'. Please continue to read more about the care that Robert needs from Dr. Robert Schwartzman, a leading physician in RSD/CRPS care and Robert's doctor. "It's very common, and it's always missed," said Robert J. Schwartzman, a professor and chairman of the neurology department at Drexel University College of Medicine in Philadelphia.Schwartzman also sees patients at Hahnemann Univer-sity Hospital in Philadelphia.

This is my beautiful wife, Lee and my girls Alyssa and Kayla.

 It began long ago..... 

 ( Me with Kayla and Alyssa in 2013)


      It is amazing how long it has been since I developed Reflex Sympathetic Dystrophy(RSD). The car accident was almost 12 years ago on February 28, 2005. I still remember it like it was yesterday...hearing the metal crushing sounds as my car was slammed into from behind. The jolt I got from that impact changed my life forever..... it took me away from the North Smithfield Fire Dept., Invacare (located in Holliston, MA) were I was selling Medical Equipment. The people I enjoyed being with on Rescue 2 working as an EMT. My life changed forever by someone who was careless. Is it fair...NO!!!!

    My wife has been my stregth and my rock in my times of need which are many. My girls, Alyssa(15) and Kayla(13) don't remember a "Daddy" that has not been sick. I have missed all there dance recital shows, family events and more. If you look at me most people say I look wonderful, great and sometimes healthy. The funny thing is that I try so hard to be strong but my body hurts so much on the outside and inside. I have good days and really bad days, like most with RSD. I try to get through it with humor, smiles and saying "I'm fine". The truth is I am tired of the pain that is 24/7. Yes, it never, never stops!!! The burning, shock like, ice cold, stabbing pain....NEVER STOPS!!!!

my right leg showing the dis-coloration from RSD.(photo taken in 2014) 

 



 


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Email Robert at [email protected]- prayer requests are also welcome.





    So Now what......

Well.....let me bring you up to speed to what has been going on in my life recently. I recently started seeing saw Dr. Ricardo Cruciani at Drexel.  Dr. Cruciani took the program over in March of 2016. I continue going for Ketamine treatments every 3 months in Philadelphia.                                    

   

  

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  I have full body RSD/ CRPS, Type 2 with full Internal Organ involvement. I am in Stage 4 RSD. The RSD has spread internally. I had to have Gastric Bypass Surgery (which was done on my Birthday) October 26, 2012. The reason for this was because my stomach was damaged by the RSD and loaded with Lesions and scar tissue and dried blood. I also has RSD Lesions on my lungs, brain stem, spinal cord and throughout my entire body. 

I need your help. Please help Robert with a donation for treatment, travel and expenses.A donation of any size means a great deal. I would also like it if you could share my website with others.The more people that see it the more people could help.  My entire family thanks you for taking the time to help. God Bless.

You can make a donation below using a credit or debit card. All donations are secure using Paypal. (Please note- you do not need a Paypal account to make a donation.)

  

 

 

 Me ..a typical day at home 2014.

 

Below are photos from my Inpatient ketamine coma 6/2015. Some photos of my nursing staff  and photos of my Hic-man central line. This line goes directly into my heart and this also allows the ketamine to be administered. 

I also was able to record a video using my tablet and the help of my nurses showing how the ketamine reacts with my body. 

My great doctors 

 

Above photo: Dr. Robert Schwartzman and myself. Photo was taken on Dec. 5th 2011 in Philadelphia, PA. Dr. Schwartzman retired after 43 years of medicine in July 2013.

(Below)  Dr. Enrique Aradillas  and  me at my annual CRPS /RSD Exam at Drexel Neurological Associates in Philadelphia.  5/21/2015  

This was my recent ICU stay at Hanahnaman Hospital. I was in the ICU for the ketamine coma from June 7-15, 2015. 

Thermography photos showing RSD in my body

The Thermography is a great tool which can show the RSD as temperature changes...the green color  is normal...the blue,yellow and reds shows the Disease (RSD) in my body.

 

 
  
   

 

My Trip into Hell is called....RSD

 Below are photos showing skin dis-coloration, Dystonia....all caused by RSD. My hands and feet feel ICE cold to the touch, but on the inside it feels like boiling Lava!

 

My ICU Room at Hahnemann Hospital from April & Nov. 2010, April 2012, Feb. 2013,  and June 2015 below

 

ICU Bed/Room

 

 

 

 

 Photos from Infusion Room at Dr. Schwartzman's Office above

Dr. Alemo and I, at the hospital for my Baclofen Pump surgery Feb. 2011

above: photo showing Pic lines (I needed 3) because my veins kept colapsing

The 2nd is showing the 8 inch scar were my Baclofen Pump was (for 4days) it had to be taken out due to infection. I am not able to get another system since my body rejected the first.

 

 

These are the 4 RSD squares our family made to be placed on the National RSD Quilt. If you would like to make a square please do so.

 

My Angels from PALS- Patient Airlift Services

www.palservices.org

 This organization provides free flights for medical reasons.

Flights above with (PALS)- Patient Airlift Services

Sometimes I feel so free flying in a plane......