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!
Imagine being an active individual then you have a surgery by a doctor that you trust, but somehow an error is made in the surgery that leaves you with a disease called CRPS. I will never forget that day! Imagine being told that you've been diagnosed with a disease called CRPS (Chronic Regional Pain Syndrome), it has no cure.
Wednesday, May 30, 2012
Saturday, May 19, 2012
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:
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:
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:
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:
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:
It is pretty easy to see that the edema of CRPS may last for
long periods of time.
PHILOSOPHY
CRPS is frequently dismissed by health professionals for many
reasons including:
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:
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.
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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
Friday, May 18, 2012
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
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
Saturday, May 12, 2012
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
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) 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
Tuesday, May 8, 2012
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
Saturday, May 5, 2012
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 3rd 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
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