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
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Consultation Area in Germany Clinic
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