My name is Jay. I
am
the website administrator
for Sarcoidosis Online Sites. I was diagnosed in May of
1996 with pulmonary sarcoidosis.
Prior to this I was
in good health and together with my spouse, owned a general
contracting construction company. I would first like to say to
you all, don't give up hope. I mean this sincerely and speak
from experience.
And while I am
listed as the author of these websites I by
no means work alone. There are many doctors, caregivers,
patients, as well as family and friends who contribute to this
website's development and who are involved in the day to day
operations of running the sites.
I am not a doctor and cannot
advise you as to specific conditions or treatments. I can only convey
what has happened to me and what I have learned from others and it may help
someone else. I am always looking to ANY relief from my daily struggle. And
it is a struggle.
I can tell you two things that I
know for absolute sure about sarcoidosis:
1. Sarcoidosis
effects everyone with a host of "similar" symptoms.
2.
Sarcoidosis effects everyone just a little bit differently.
My problem
started when severe chest pain that forced me to go to the
emergency room where I was treated like a heart attack
patient. I was having trouble breathing, sharp pains like a
knife stabbing me each time I would take a breath. Once it was
established I wasn't having a heart attack the E.R. Dr. told me,
the same thing many other patients with Sarcoidosis are told,
that I had Cancer. After leaving me with this for a while he
came back and said I either had Cancer or it could be something
he had just seen in another patient called sarcoidosis. I was
there in the most painful experience of my life
(so far) "rooting" for the lesser
diagnosis of sarcoidosis.
Kind of an odd feeling. I think anyone
who has been diagnosed this way
can relate. Then I
was given a small reprieve. I was fortunate in that it was
sarcoid. The day before my dermatologist removed odd
looking bumps from my forearms. What I didn’t find out until a
few days later that skin plaques (which look like wax dripping)
are a common symptom of skin sarcoidosis.
Since then I have
had just about every test they could think of including x-rays,
heart catheters., pulmonary catheters, bone scans, lung scans.
gastroscopy / endoscopy bronchoscopy, Upper GI ,CT scans, EKGs,
EEGs, arterial blood gases, gallons of blood work, bronchial
washes and many, many others and finally a mediastinoscopy
biopsy which, as it
was a diagnosis by elimination,
"confirmed" an acute case of sarcoidosis in my lungs (bilateral
hilar lymphadenopathy) a common type of
sarcoid. But there was a lot less
known about sarcoidosis even just 10 years ago.
After the initial
diagnosis of pulmonary sarcoidosis and prompted by a kind nurse,
I, along with my family began the search for more information
beginning with the hospital library. The medical library and
local physicians produced little information and what was
provided was outdated. We searched the Internet
which, at that time was just starting to come into it's own and
produced very few articles on sarcoidosis.
And what we did find pertained
mostly to the disease in horses. While
interesting, it offered no real help.
After the local
sarcoid clinic and many hospital stays and emergency room visits
with no change I set out to look for information elsewhere
starting at the Cleveland Clinic (Cleveland, Ohio USA). Then on
the advice of one of my doctors I went to the sarcoid clinic at
Johns Hopkins Baltimore Maryland (USA). There, my Dr. told me I
had more than a simple case of sarcoidosis and to that point the
worst case he had ever seen. He also said I had other illnesses
in addition to the sarcoid and I needed to sort out each illness
from the others. So that was what we set out to do. The next
stop was The Mayo Clinic in Jacksonville Florida (USA). Around
this same time I had an appointment with Dr. G. James. He is
considered by most Drs. to be one of the leading experts in
Sarcoidosis. His practice is in England UK but he was speaking
to a group of Drs in Miami Florida and agreed to see me. He was
a wealth of information and after my exam gave me hope and
insight into dealing with sarcoidosis. Since then he has helped
me keep on track and make informed decisions about my treatment.
After these travels we had sorted out, for the most part, what
sarcoidosis was and was not and how my body was reacting to the
disease. We also gained insight into the many other illnesses
effecting me as a result of the sarcoidosis.
We narrowed my
problems down to the sarcoidosis -effecting my lungs, skin,
liver and spleen, acid reflux and esophageal spasms which were
causing the "heart attack" like pains brought on each time I
take prednisone. (I would end up drinking liquid Novocaine mixed
with an antacid to try and control that pain), a hiatal hernia,
and high blood pressure. Also, as a result of the initial
sarcoidosis I have a condition called costochondritis.
Costochondritis, in my case, causes constant heart-attack-like,
stabbing chest pain that radiates in front and back and down the
left arm. It is an overwhelming pain. Unremitting, debilitating
and demoralizing. There is never relief, only varying degrees of
pain.
I was given the regimen of
steroids and the mass in my lungs subsided but, the chest pain
remained. Due to successful treatment of an every-other-day
dose of prednisone and a year and a half of reducing off the
drug, my sarcoidosis, as of November 1997, is in a state of
"remission" and I no longer take prednisone. The meaning of
remission in my case means a clear, negative chest x-ray. Being
systemic, I have been told, sarcoid is always with you. You can
never get completely rid of sarcoidosis. It can only remit.
Also, because sarcoidosis is a
systemic disease it was still taking its daily toll. The
everyday struggle is hard to imagine for anyone not familiar
with this disease. It is also hard to put into words what life
was like. The stress and pain in our daily lives. The constant
fatigue, shortness of breath, sweats, fever, nausea, vomiting,
dizziness, cold chills and severe pain can make simply getting
out of bed a battle. Although words do not do it justice I can
best describe it as a kind of macabre multi-symptom-cocktail
consisting of severe flu combined with a nasty hangover, sea
sickness and a twist of food poisoning. This on top of
unrelenting chest pain. Work is impossible for any length of
time because I could not stand, sit or ride in a vehicle without
quickly compounding these symptoms.
I must tell you that my life
mirrors your's in many ways. And although our business was
not a huge company yet, we were just coming into our own when I
was diagnosed May 16, 1996 and everything stopped. To say
sarcoid has deeply and seriously affected my life and family is
an understatement that I could never express. My biggest problem
is how my illness, that I can't control, is effecting my wife,
and entire family, (who are great by the way). I have great
support but I can't help but feel their lives would be much
richer if they did not have to concern themselves with me and my
illness. I can deal with my illness and pain as it effects me
but can't take the way others are effected by their inability to
help. I have a lot of time to think. And one of the thoughts
that crossed my mind the other day, while searching for answers
was that the pain sometimes makes me feel like I am in prison
for a crime I did not commit or, a hostage. I know I didn't do
“it” as does my family and friends but every day there is still
the pain and problems of surviving another day where I am. Doing
time, searching for answers and a way out. (that last bit was
dramatic, no?) And there is also the fact that I have no idea
when or if the pain is ever going to end. Like an open ended
sentence. "you just go start serving time and someone will let
you know later on how long we're going to keep you locked up"
It's lousy. You can understand a little bit about what I am
talking about if you can recall what it feels like taking a trip
and driving somewhere unfamiliar. It seems to take forever to
get there and the trip out seems to go on and on. But, on the
way back you know your destination and about how long it should
take to get there and it's a whole different feeling. You at
least have some idea as to when it's going to end. With my pain,
I do not. I just keep going trying to not keep track to closely
of how far away I am from my old self. You know. "The trip out".
Only my wife’s love and support and her dedication to finding me
some sort of relief has kept me holding on for some help these
past seven, now going on eight years.
There is certainly pain
associated with sarcoidosis. I was told this by Dr. Carol
Johns when I first got ill in May of ‘96. Over the years I
have heard from many other people with pain associated with
their sarcoidosis. It is a bit different in everyone as the
sarcoid is, but it is generally felt in the same places ie;
joint pain, headache, knees ankles etc.. Oddly enough I have
found many people that have specifically, left side chest pain
(like me) with their sarcoid.
Ever since being diagnosed I
have fought the pain battle. I have tried about everything
we could think of hot packs, cold packs, T.E.N.S. units many
different pain medications, even alternative treatments like
acupuncture to name a few. Physical therapy only exacerbates the
problem, getting steadily worse with each session. My pain is in
my chest, left side, by the 4th and 5th costochondral junction
and radiates straight through my back under my shoulder blade
and down my left arm. I have since heard from many others with
this same symptom. My pain has been unrelenting. It has subsided
some over the years with pain medications but this is treating
the symptom not the problem and the medications had to be
changed periodically as I would build up a tolerance to them.
There are also a ton of other problems that go along with being
on pain medications long term. Another rather scary side effect
I experienced was a slight case of amnesia. It cropped up from
time to time in different places. Sometimes while riding, not
driving, in the car down a familiar street looking out the
window and I would realize I had no idea where I was. Or waking
up in bed, sitting up, looking around and not recognizing any of
your surroundings. The episodes didn't last long, maybe five or
ten minutes, but it was terrifying when it happened.
I have had direct trigger point
injections in the past and they had helped to a point. It is not
a pleasant procedure but, I would do just about anything to
reduce the pain. My trigger point injections involved inserting
a needle filled with steroids and pain killer into my ribs,
dragging the needle along the bone until it would hit the very
worst spot of pain (which raises you off the table) then
injecting the solution.
I have not found much relief over
the years and had almost ceased to function. I have had some of
the worst times of my life since diagnosis. I was in the
throughs of a really bad stretch of about five months in mid
September of 2001 while on a visit to my Dr. at the Mayo clinic
where my wife presented an article she found (as she has done on
almost every visit) about some new treatments. The first two he
didn't think would work. The third was an article about Botox
injections that had helped this one particular person with this
same kind of chest pain. He said he did know about the botox
injections but because the other injections didn't help he
figured these would not help either. But said he would set up a
consult with the Neurologist that did the procedure. It involved
a direct injection of Botox, the same thing people inject into
their foreheads to remove wrinkles, into about same area as the
trigger point injections.
I had the procedure done. It took
five minutes and didn't hurt a bit (relatively speaking) .
Getting blood drawn is worse. The Dr. said I would not feel the
full effects of the injection for 10 days. I had no expectations
in fact I am a great skeptic when it comes to my health. Too
many times I have heard "I can help you with six or ten or
thirty treatments" Then, after the treatment doesn't pan out I
get "you are a tough/special/difficult case" Ten days came and
went. Another failure. I am used to it. Then came Day 21. About
three weeks after the injections my pain seemed to subside. Over
the next few day the pain continued to diminish. Ever the
skeptic I am still waiting for the other shoe to drop. I managed
to string four then five days in a row of “today was better than
yesterday“ being the judging factor. Then a few more days. Then
a month. I haven't felt relief like this since I first got sick
in 1996. But I am still not sure it is the botox or just a lull
in the action. It has happened in the past where I get a couple
of decent days and got my hopes up just to be let down when the
cycle starts all over again.
In November of 2001 I went in
for another series of Botox injections. By now I had a lot
less pain than the first visit. In order to find the exact spot
for the injection the Dr. had to push a bit on my ribs. Although
it did result in finding the spot it also sent me into a
terrible bout of pain that lasted about four weeks. It was as
though I had had nothing done at all and I felt like I was back
at square one. Eventually the Botox did its thing and the pain
started to decrease again. Each time I had a decent day I would
try to do some activity. Something small. Walking a bit. Work on
the computer. Heck, sitting up watching TV was a treat at this
point. I felt better and better as time went on. I felt so good
in fact (relative to the pain of the last six years) that as my
appointment for my next Botox visit approached in January I
doubted whether I needed another treatment or not. After my
appointment with the pain Dr. it was decided I would forego
getting another injection as it was thought at that time that
using Botox when not really needed could cause my body to build
immunities against it rendering it ineffective. I’m not sure how
much of that is really known. Each time I go for a treatment it
seems the opinions of the physicians get modified according to
the patients they have seen over the past few months.
So I decided to skip the
injection this time an see what happens. That was a bad mistake
on my part. The beginning of March the Botox started to loose
its effect. As the weeks went by my pain increased until I was
in just about the same state as the first time I had the
injection or worse. Debilitated. It was April 25 2002 before I
could get back in for another round of injections. This time was
a little different. I had no problem finding the spots that hurt
and the procedure itself was different. The physician hooked up
a sensor to the needle before the injection. An EMG its called.
When inserted under my skin you could hear, like a "Geiger
counter" sort of noise that indicated to the Dr. where I was
having the most discomfort. Once he hit one of these spots he
would inject the Botox. So far this has been the best procedure
with the best results. It took about six weeks before I started
to feel relief again. It was the biggest amount of Botox I had
had injected but it also took the longest before I felt the
effects. The pain is diminished at this point but still
constant, just not as severe unless I push my limit too far.
August 2002 and time for
another round of injections. It was also time for my yearly
physical, pulmonary function tests, blood work, x-rays EKGs etc.
A complete work up. I had the same doctor and got to give him a
good report on how the last round of injections went. And
it was going well. I was feeling better, less pain but about two
weeks before my Dr. visit I started to have more pain and I
started to get worried that I wouldn’t make it to the
appointment without being in serious pain for the last two
weeks. I got the injections again. The doctor used the EMG again
and all in all a good visit. Since the previous injection I was
able to do a little bit more. I could ride comfortably in the
car for some time. I could move more. Walking the mall just
window shopping. I try to do as much as I can everyday.
Because of this I started to loose weight and build back some of
the strength I had lost over the past six years in pain. I am
feeling stronger now than I have since my diagnosis seven years
ago. Between October 2001 to February 2002 I reduced
completely off of all prescription pain meds. I was surprised to
discover that after this reduction I didn’t feel any better. I
thought it would be immediate. It’s hard to believe sometimes
that I can be as sick as I am after six years. Being sick has
taught me a lot about patience. I am due for another round of
injections about once every three to four months. I still have
confidence that the injections will keep working and I will
continue to improve.
It is interesting to note that
the first time I had a Botox injection the neurologist’s waiting
room didn’t have more than ten people. And it didn’t appear
that they were there for pain relief. Some were in wheelchairs
and were apparently being treated for spasticity problems. That
is to say muscles that constrict so tight they can’t move as
with Multiple Sclerosis. A few others may have been there for
cosmetic reasons. Over the last year the crowd in the waiting
room has changed dramatically. More people in general and more
people in pain evident to me because they behave in the same
manner as myself, the pained expressions on their faces and also
comments made to me by the doctors and nurses at the
neurologist’s office. They are seeing more people for pain
relief.
As I approach the anniversary
date of my diagnosis I thought it a good time to update this
portion of the website and brief you on my battle with
sarcoidosis and pain.
Well, it has happened. The
"other shoe" has dropped. My pain is back and in full force as
if the past eight years had never happened. After my last
update things were going well. Actually things were going
fantastic relative to the whole sorted tale. Much has happened
since my last post a year and a half ago. (It doesn’t really
seem that long.)
As planned, I received a botox
injection at the beginning of December 2002. About 25 days
later, on Christmas night, I had what appeared to be a bad case
of food poisoning or a bad flu. Violently, continuous vomiting,
sweating, diarrhea, the works. It lasted about 24 hours. As a
result I feel as though I didn’t get as much benefit from this
last botox injection and my doctors just assumed it was because
I “exercised” my chest cavity so forcefully while vomiting all
night with the “flu” thing. I believe this is the sickest I
have ever been in my entire life. (up to that point)
I received another botox injection
in February with slightly more positive results than the last
round, but they didn’t last very long. At the beginning of May,
I went to the doctor and got another botox injection.
On May 12th I was violently ill
again, same thing, just like at Christmas, only this time it
wouldn’t stop and I was admitted to the hospital. After a
series of tests it was determined that I had idiopathic
pancreatitis. I contacted all of my doctors and was assured that
there are no documented cases of botox causing pancreatitis or
any of the flu-like symptoms I had been having. In fact they
sometimes used botox for pancreatic pain. Needless to say I
didn’t get much benefit from the May botox injection either.
I called my pulmonary doctor at the
Mayo Clinic and he referred me to their head of
gastroenterology. I went to see this doctor and he ran a ton of
tests. He didn’t quite accept the diagnosis of pancreatitis, but
after the tests were in, his conclusion was still Idiopathic
Pancreatitis. FYI: This Idiopathic condition only happens in 2%
of all pancreatitis cases.
Among the tests I had done at that
time was a Hidascan. This was the second Hidascan I had done
since the diagnosis of pancreatitis. Simply put, a Hidascan is
kind of like a CT scan. They give you an IV and inject a
solution that makes your gallbladder intake the die from the IV.
They time this and record information about how much and how
long it takes to fill the gallbladder. Then they give another
injection which make the gallbladder eject the die. They time
this and record information about how much and how long it
takes. This is called the ejection fraction. My wife, after
taking the crash course in Hidascan information asked my doctor
about the fact that the numbers pointed in the direction of
gallbladder disease. He dismissed the idea. It was only after
our prompting that he scheduled another Hidascan. He was very
reluctant stating that “even if the numbers are high, he
wouldn’t recommend surgery.” I had the second Hidascan done on
the 19th of July as well as another Botox injection because my
pain had gotten worse. This time the test was very quick. The
last one took about 45 minutes. This one took half that. At the
end of the test I asked the technician why it was so quick and
weren’t they going to do the other half of the test, the
ejection part? She just said “you’re all done” and that was
that. We called The Mayo Clinic three days after returning home
as I was feeling very ill and hadn’t heard any results from my
test. My doctor, the head of gastroenterology called back and
spoke with my wife. He told her that the Hidascan was “perfect”
and he conclusively ruled out any gallbladder disease. My wife
said that seemed odd since I was in bed doubled over in pain.
The same pancreatic pain I’d had before. She asked what the
numbers were and he reluctantly looked through his notes and
said they “were fine, all normal.” When she asked specifically
about the ejection part of the test he said “I’m very sorry, but
we didn’t do that part of the test” Somehow it was left off the
orders and not done. He said that we could come back up and have
that test done again if we wanted “free of charge” but he didn’t
think it would make a difference as the gallbladder looked “ok.”
He also told us that the only reason he continued to look at my
case was because “we kept asking so many questions”
Unfortunately, the next day I was in the emergency room of our
local hospital and admitted for a “small bowel obstruction”
possibly pancreatitis. The nurse practitioner who works with the
gastroenterology doctor at the Mayo did finally call back on our
cell phone to state “the gallbladder is perfect and we’ve put to
bed the idea of gallbladder disease.” I got this message while
in the hospital. Again, a ton of tests were done and no reason
for this diagnosis. I made the trip to Jacksonville again and
had a full work-up from my Mayo Clinic doctors as well. They
came up with the same conclusions. Because they could find no
cause I was sent home and told to wait for another gallbladder
or pancreatitis episode and contact them at that point so they
could do more tests.
Though all of my gastrointestinal
doctors assured me that my gallbladder was fine my family doctor
sent me to a surgeon who had heard of the exact symptoms I was
having and suggested I have surgery to remove my gallbladder. I
agreed and in August had my gallbladder removed. It was diseased
inside and out, but the surgeon wasn’t sure it was bad enough to
cause pancreatitis. I had another botox injection in October
2003. I had some stomach illness, but not serious enough to
warrant a hospital visit. The botox injection afforded me a
slight bit of pain relief this time but nothing close to what
the initial injections had done.
Since December of 2002 I had
started to increase my pain medication and I continued to need
narcotic medication to get any pain relief. It was at this
time that my doctor at The Mayo Clinic that had been overseeing
my pain management left the clinic to pursue his profession in
another state. I was assigned to another pain doctor who I met
in November 2003. From the onset, it was obvious he had a
different philosophy on how to treat patients with pain. I heard
words like “detox” and “we have to get you off the pain meds”
etc. over and over. Of course, I had already been off all pain
meds prior to the pancreatitis attack and heading towards a more
normal life.
My father, recognizing that I
needed another opinion told me of a doctor in Boston he’d read
about in Reader’s Digest of all places. I went to see him in
January 04’ and after an extensive visit, he determined there
was nerve damage done secondary to sarcoidosis.
Basically, he thought the granuloma
in my chest cavity was so large at one time that it pinched a
pulmonary artery probably for months before I went to the
hospital in May of 1996. And that it was this prolonged pinching
that caused the nerve damage. He likened it to someone who
pinches their finger with a pair of pliers. If the finger was
pinched for a few seconds you could let go and your finger would
probably be fine, but, if you were to hold the same finger
pinched for say a year you are probably going to do some serious
nerve damage. He recommended a nerve block, several anti-seizure
medications I hadn’t tried for nerve damage, and a five day
epidural infusion.
My new Mayo Clinic pain doctor
started me one of the new anti- seizure drugs and did a nerve
block that didn’t provide much pain relief. In fact, it caused a
lot of pain in my back, which he attributed to narcotic
medication causing me to be hyper-sensitive to pain. I did get
relief but only for about 3 hours. I was very disappointed. And
the anti-seizure meds actually caused pretty major convulsions
lasting for about 15-20 seconds. I would shake so badly that our
mattress would actually move off the box spring during the worst
seizures. Plus, I had the worst depressing gloom and doom mood I
can ever remember.
I’m currently on another
anti-seizure medication which is working better. I still have
convulsions problems and muscle clenching which I found out from
one of my new doctors is called Myoclonal. The new Mayo
Clinic doctor refused to try the five day epidural infusion as
he doesn’t think it will provide any more relief than the
“unsuccessful” nerve block. He continues to want me to get off
my pain medication, even though my pain has not lessened. He
continues to press me to have a Medtronic internal stimulator
unit surgically placed in my abdomen and spine for pain relief.
He gave me a pamphlet about the stimulator to read. This, I was
told, would answer all my questions about the device. If I need
more information he told me to look it up myself on the
Internet. I asked if I could go back to work with the device.
His answer, “probably not.” This should have been my first clue
that this wasn’t for me. Now, I know Jerry Lewis has received
significant pain relief from this type of device, but after much
research I found this unit to be tenuous for me at best. You
have to give up the idea of exercising, working, especially with
power tools or a welder and the unit can set off alarms in
stores or worse the unit itself can be reset or shut itself
down. Plus, I’d have to go in every so often to have the unit
batteries replaced meaning taking the unit out, replacing the
batteries and re-inserting it back under the skin. Also, the
incisions are in the upper spinal area and also in the abdomen.
I’m not a fan of surgery with sarcoidosis for obvious reasons as
I tend to “over heal”. Since this doctor gave me no other
options, we had to continue our research into this unit and any
other less invasive procedures for pain relief.
In an attempt to research the
internal stimulator unit, I located my previous pain doctor who
had left the Mayo Clinic some months earlier and will visit with
him later this month for a second opinion, as well as a
follow-up visit with the pain doctor in Boston. Last week I
called my pulmonary doctor at The Mayo Clinic looking for more
help and was informed that he has also left the Mayo and the
state of Florida to join a practice elsewhere. We have tracked
him down also and have made an appointment with him at the end
of this month (May) for another opinion.
I had a botox injection about 6
weeks ago, and even though my pain continues to increase either
the anti-seizure medication or the Botox or both seem to be
providing some degree of pain relief. At this time I'm pretty
much limited to staying at home, most of the time in bed. I have
also been practicing self-hypnosis and natural-pathic pain
relief methods to varying degrees of success. I will post
another update after my next series of trials.
We went up to Boston to visit the
pain doctor at Tuft’s Medical Center. On the way we stopped
in South Carolina to see my pain doctor and North Carolina to
see my pulmonary doctor. I wasn’t sure what advice the pain
doctor at Tuft’s Medical Center would give since my Mayo Clinic
doctor wasn’t willing to try anything further than the internal
stimulator. To my pleasant surprise and relief, he saw things
completely different than I or anyone else to this point had
seen things. He was actually encouraged that the nerve block
only worked for 3-4 hours. He said as long as I had some result
from the procedure he could build on this and I might be able to
get long term pain relief. He said he had researched the nerves
that were affected by the sarcoid granuloma pressing on the
pulmonary artery and said he now believes with 99.9% accuracy
why I have pain. The pinched nerve. He said the nerve that was
damaged is shaped like the letter “Y” and that based on how the
nerve block was performed, it would only affect the nerve in
front of the chest but not the nerve in the back. In fact, the
block could cause even more pain after the nerve block if it
didn’t reach that nerve. He also said that I could try another
medication for pain relief, a cream, that is applied to the
wrist and absorbed through the skin. I’ve also been using this
since the visit with some positive results.
I am now under the care of my old
Mayo Clinic pain doctor. He wants to try another nerve block,
actually two blocks, both in the same week three days apart.
Both he and the doctor in Boston said it’s difficult to reach
this nerve as it’s in a tight place between the lung wall and
the rib cage. There’s a greater chance of puncturing the lung
during the procedure. I’m willing to take that chance as if it
means pain relief for me without narcotic medications. If they
can interrupt the pain signals long enough it may provide the
elusive long term pain relief I’ve been seeking for the past 8
years.
So, with all my “ducks in a row”
I will continue to see my old Mayo Clinic pain doctor in
South Carolina, my old Mayo Clinic pulmonary doctor in North
Carolina, and my local G.P., all who are willing to work with
the Boston pain doctor toward as resolution. I feel lucky to
have connected with the pain doctor in Boston and also to have
reconnected with previous helpful doctors.
UPDATE: August, 2005
Wow! It's been over a year since
my last update. Time flies when you're.......engrossed in pain?
No. That doesn't sound right. But, it has been a long road to
this point. This update will be the condensed version. Believe
it or not.
Under the care of my pain control
doctor in South Carolina, we have set out on a course of
treatment the likes of which neither he nor I had ever heard of
until now. I hate being in uncharted territory.
The plan was "simple" The Dr.
would do a series of injections over a course of time. A series
of injections every-other-day, Monday, Wednesday and Friday for
three weeks. Then go home for three weeks. Then back to South
Carolina for three weeks. And so on for a total of six times.
With the time in between it would take about nine months.
The injections would go in my back
where the nerve exits from the spine. Called an intracostal
nerve block and is similar to an epidural nerve block. In my
case he would put an injection at the site where it exits then
four more. Two above and two below the first. All this is done
under a fluoroscope. It's like a "moving x-ray" which allows the
Dr. to position the injections.
The procedure starts by starting an
IV so they can put me far enough under so I don't have any
jerking motions while they are doing the injections. After
sedation the Dr. positions the fluoroscope and marks the
injection points. A local anesthesia is injected at each point I
guess to ease the discomfort after the sedation wears off. The
nerve blocks completed. After that I spend about an hour in
recovery then sent home. Five sites, ten shots, three times a
week for three weeks equals about ninety shots per series not
including IVs. But it all sounds a little worse than it is.
So, it's been about nine months.
With the first few series I went in with a very high pain level
and came home feeling better after I had time to recover a bit
from the trip. At the end of the nine months, specifically
the last series, I went in feeling a pretty low level of pain
and after coming home took a little longer to recuperate.
Once again in my life I was able to
reduce then totally get off of all narcotic pain meds. I have
done this before. It is not the easiest thing to do and takes
about three months of the most miserable withdrawal symptoms.
Fevers, nausea, the whole bit. The odd thing is you don't really
feel as great as you might think. It does feel good to know you
can do without them if the pain goes down. And to not have all
the side effects and your senses dulled. But you also don't wake
up one day at the end of a few months of withdrawals and
suddenly everything is fine. The side effects and withdrawals
just get less and less over the following months providing the
pain stays down as you try to combat the pain with things other
than narcotics.
I am home now and feeling much
better. The pain has gone way down and stays there as long
as I keep my activity level low activity. At least at first.
This was part of the original plan. I am trying to do more
activity as tolerated and trying to keep it restricted away from
my chest which was also part of the plan.
I will continue to see my pain
control Dr. as needed over the next year. I must say I am very
happy with the results. Considering all the other treatments I
have tried over the years that didn't work I am very glad I
stuck with the program.
As always, I encourage anyone who
has read this far to continue to research your illness. Continue
to search for competent doctors. And most of all, continue to
keep hope as new treatments are being discovered everyday. I
will post more information as the results of my trials are
found.
I wish good luck and good health to
us all!
If you would like to
contact Jay to discuss sarcoidosis or any other related topic
send an email to:
jaysjob@gmail.com |
