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 |
