KAK@VAX5.CIT.CORNELL.EDU (Kim) (05/28/91)
Index Number: 15814 Hi -- this group is new to me, so im afraid im posting questions that have been asked of the regulars many times;... My doctor has suggested 'sympathetic nerve blocks' after almost 7 years of disabling chronic pain. Ive become terribly isolated since the onset of this situation (disease ? Illness ? Injury ?) and realize that i am very niave concerning this type of treatment. Of course, ive grilled my doc, and read some 'clinical' literature (propaganda?) but i havent been able to get in touch with anyone who has tried this. I know there are no guaruntees, but if this sort of treatment will improve my mobility, i have nothing to lose (do i?). (Ive tried every drug and form of therapy under the sun.. percocet didnt even touch it.. i was just drugged and in pain.. Have also tried steroids, accupuncture, kinesiology, chiropractic, healing diets, TENS, homeopathy -currently, mega-vitamins.... Anyone out there tried this ? Doc suggests a 'pain clinic'. Any recommendations positive or not? Im not interested in learning to breathe and other new age stuff. I do those things to survive. FYI, my story (short version): I am 34 yr. old female who used to be obsessively active and athletic . With no warning, i developed *screaming, debilitating, disabling* sacro-illiac lower-back/hip pain. The pain does *not* radiate down my leg. Worse on weight bearing (walking) and in cars. It doesn't improve on rest, but definitely worsens on activity. Sometimes there are "explosions" of sharp, "take my breath away" pain, which, if occur too often put me right in bed. Usually these are on weight bearing, but on a bad day, may occur while at rest. Since the onset of this pain i havent been able to walk more than about 50 steps-- and this with GREAT difficuty. Wheelchairs dont help, since the bumps, vibrations, general activity increases the pain to *intolerable*. Initially they diagnosed Ankylosing Spondylitis, but after about 4 yrs with no radiographic changes (no fusing), no remissions and no help from NSAIDS, the doc's decided that this isnt AS. Basically, they just dont know. I hurt like hell. Use a cane/walker. I am essentially housebound -- the only place i go is to work occasionally (but once there have trouble dealing with ANY activity that requires leaving my desk.. bathroom trips, etc). Much of the time at home it hurts just to sit perfectly still and breathe. Ive taken every drug under the sun and tried every form of traditional and non-traditional therapy.....(including lots of cortisone injections). No relief. For the last year I also have a host of systemic symptoms, that, unlike the pain are intermittent-- cold sweats at night, lowgrade fever, swollen glands, nausea, acheyness, etc.. i'm not convinced that they're related to the SI/hip/lowerback pain. I believe THESE symptoms are so-called fibromyalgia, but that there MUST be something mechanical going on with the SI situation. Ive progressed from an active, outgoing woman to a recluse -- ive learned that to make it to work as often as possible, i need to spend my time not at work resting. Ive almost accepted the fact that i may never be athletic again, but i sure would like to be able to go to the grocery store, or a concert, or cook a meal.. or, even just not have to worry about how many steps is it from here to there and do they have handicapped parking and how BIG is that building (hospitals are a joke) and i wonder how far the bathroom is.... so, folks in netland.. whats the scoop on these pain blocks ?? Any stories you care to share ? oh -- am about to try muscular injections of Magnesium.. any advice there? Thanks for reading. All comments/ideas/insights welcome. kim kak@crux1.cit.cornell.edu
wtm@bunker.shel.isc-br.com (05/28/91)
Index Number: 15815 > My doctor has suggested 'sympathetic nerve blocks' after almost 7 > years of disabling chronic pain. I've been in pain almost 12 years now from a car accident. At one point, it was bad enough that I was up to 8 percocet a day. Right now, I survive on a Spartan diet of 2 Vicodin and 2 Darvocet a day. I've been to two pain clinics (as well as to the usual assortment of chiropractors, orthopedic doctors, neurologist, neurosurgeons, physical therapists, acupuncturists, etc, etc). The first pain clinic was at Yale where they decided to try a Sphenopalatine Ganglion Nerve Block. I had this procedure done before by the doctor who started it, Doctor Milton Reder in NYC. The Sphenopalatine Ganglion is at the rear of the nasal cavity so the block is done with a 8 inch cotton swab with a 15% cocaine solution (yes, it is perfectly legal but has been highly controversial due to the use of cocaine). Yale uses lidocaine instead of cocaine. After several treatments with no significant results, I found out that I had such a deviated septum that they could not touch the ganglion. So I had surgery to fix my deviated septum. By the time my nose had healed enough to tolerate another nose block, the doctor at Yale who had done it was no longer there and the next doctor wanted to try some other procedures. I then learned that Doctor Josef Wang, the doctor who had started the pain clinic at the Mayo Clinic and later started or ran the pain clinic at Yale and who had been nominated for a Nobel Prize in Medicine for his work in Pain Management now had his own pain clinic about 30 miles away so I started seeing him earlier this year. He tried three epidural nerve blocks where he injected steroids and a synthetic morphine along the spinal column. Each helped but only for a period of several hours to overnight. The next step is to implant a permament catheter in my back where I can administer morphine every several hours. Every two months or so, I'll stop the injections for a day or so to see if the pain cycle is broken. This will be within the next few weeks so I will keep you informed. If you are interested, give Dr. Wang a call and get his booklet on pain management: Pain Management of New England 2440 Whitney Avenue Hamden, CT 06518 (203) 248-1134 I am tired of just surviving life -- I would like to begin living life again. You said something about injections of Magnesium -- I thought that I had tried just about everything but this is new to me. Any more information? Bill McGarry (203) 337-1518 UUCP: {oliveb, philabs, decvax, yale}!bunker!wtm INTERNET: wtm@bunker.shel.isc-br.com BITNET: l-hcap@ndsuvm1.bitnet (300/1200/2400 baud, 24 hours) Compuserve: 73170,1064 Fidonet: The Handicap News BBS (141/420) 1-203-337-1607
Gary.Bewell@f424.n104.z1.fidonet.org (Gary Bewell) (06/14/91)
Index Number: 16047
[This is from the Chronic Pain Conference]
K> From: KAK@VAX5.CIT.CORNELL.EDU (Kim)
K> Index Number: 15814
K> My doctor has suggested 'sympathetic nerve blocks' after
K> almost 7 years of disabling chronic pain.
I had a nerve cut in my right foot. 6 months later the shooting
pain had worsened. I had a temporary nerve block. The doctor said
the benefits would last 2 - 4 hours. If it worked, surgery would
be done on my foot again. I jumped at the opportunity to stop the
pain.
The nerve block lasted less than 20 minutes. Based on that he
still felt an exploratory surgery of the area would be beneficial.
13 or 14 years have passed and I still have intense shooting pain
along with numbness in 2 of my toes. It really wasn't worth it. I
was blacklisted because I continued to complain about the pain.
The attitude was that I should be well even though they discovered
that the original cut nerve had not healed and the bare nerve
ending was rubbing against scar tissue from the operation.
K> I know there are no guaruntees, but if this sort of
K> treatment will improve my mobility, i have nothing to lose
K> (do i?).
I wouldn't bet on it.
I met an amputee who had a nerve block in his spine. It didn't
work so he had his first amputation. He developed phantom limb
pain.
A year later he was given a second nerve block. This one was for
the other leg. He shortly after this had to have this leg
removed.
He told me that he now had phantom limb pain in both legs plus the
effects of the nerve block. He had to use a catheter because he
couldn't control his bladder.
When I met him, he was in for a colostomy because he couldn't
control his bowels either.
I would avoid surgery. There are just too many problems that can
develop.
K> Anyone out there tried this ? Doc suggests a 'pain clinic'.
K> Any recommendations positive or not? Im not interested in
Definitely try the pain clinic before even considering a nerve block.
K> Since the onset of this pain i havent been able to walk more
K> than about 50 steps-- and this with GREAT difficuty.
Force yourself to walk no matter how much pain you are in. Muscle
tissue starts to deteriorate within a couple of days. Once you lose
the ability to walk it can take years to gain it back. (Mine took
3 years. Now I can walk (in pain) a couple of miles on soft
surfaces. Malls and sidewalks still kill me off quickly.)
K> Basically, they just dont know.
That sums up my opinion of knowledge on pain and pain control.
So where am I now? I have shooting pain from the foot (due to
botched surgeries), burning pain in the right leg and arm (due to
multiple sclerosis), and pain and muscle spasm pain in my neck (due
to a high speed whiplash accident).
Oh for an uncomplicated life!
Gary
# Origin: Time passes... , Calgary, AB (MetroNet 201:5500/198)
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!104!424!Gary.Bewell
Internet: Gary.Bewell@f424.n104.z1.fidonet.orgKeith.Jones@f3.n157.z1.fidonet.org (Keith Jones) (06/18/91)
Index Number: 16198
[This is from the Chronic Pain Conference]
-> I had a nerve cut in my right foot. 6 months later the shooting pain
-> had worsened. I had a temporary nerve block. The doctor said
The word is now out on having nerves cut. It does not work. In fact
many times,as in your case, the result is worse pain. I was offered a
rhizotomy (nerve cutting) a year ago and turned it down for the reason I
just mentioned.
-> was blacklisted because I continued to complain about the pain. The
-> attitude was that I should be well even though they discovered that
-> the original cut nerve had not healed and the
-> bare nerve ending was rubbing against scar tissue from the operation.
This is typical of the medical establishment. They go in and do their
handywork and, of course, it is perfect. How dare you question them! The
problem simply cannot be that they screwed up. If you complain, you are
a source of frustration to them. Their big egos cannot deal with you.
Therefore you are labeled a "head case" or a difficult patient.
-> I met an amputee who had a nerve block in his spine. It didn't work
-> so he had his first amputation. He developed phantom limb pain.
->
-> A year later he was given a second nerve block. This one was for the
-> other leg. He shortly after this had to have this leg removed.
-> He told me that he now had phantom limb pain in both legs plus the
-> effects of the nerve block. He had to use a catheter because
-> he couldn't control his bladder.
->
-> When I met him, he was in for a colostomy because he couldn't control
-> his bowels either.
This is a very strange scenario. I have to believe this man had other
problems he did not tell you about. I know some people who have had
nerve blocks and were greatly helped by them. I have had them myself
(though they did not help). They are relatively harmless as far as
medical procedures go (but nothing is guaranteed).
Really sorry to hear about all your complications. I also have
terrible pain due to a botched surgery. These surgeons are not the gods
they think they are as we both know.
-Keith_
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3!Keith.Jones
Internet: Keith.Jones@f3.n157.z1.fidonet.orgKeith.Jones@f3.n157.z1.fidonet.org (Keith Jones) (06/18/91)
Index Number: 16200
[This is from the Chronic Pain Conference]
I have had nerve blocks, both with cortisone and morphine. I got no
relief. I have a friend, however, with bad pain who has had nerve blocks
for years. He gets 5 months of little pain. When they wear off, he is
back in terrible pain. I would give them a try. They are relatively safe
as far as medical procedures go (though there are no guarantees in any
procedure).
I can relate to your story and frustration. I was also very athletic.
I suffered a spinal cord injury during routine surgery (at least that is
what I was told at the time). Anyway 5 years later, after graduating
form college, racing wheelchairs competitively, etc. I developed pain in
my back, right hip, and ball of right foot (not radiating).
-> steroids, accupuncture, kinesiology, chiropractic, healing diets,
-> TENS, homeopathy -currently, mega-vitamins....
I have tried all these also with the exception of accupuncture. What
is homeopathy and what megavitamins were you told to try?
I should point out that I have had every test imaginable done to get
a diagnosis for my pain and nothing can be found. I am ready to resort
to a pain management clinic. I have heard good and bad about them. I
think alot has to do with your mental attitude when you go to one. Also
go to a good one. There are several springing up all over the country
without very good credentials just looking to lure desperate individuals
like ourselves into their programs for our money.
I wish you lots of luck. I am 35 myself and I also would like to be
able to enjoy simple pleasures in life. We have too many years ahead of
us. I know it's not easy but hang in there. Try the technology available
today and hope that medical technology will soon find an answer to our
problems. They seem to make great strides in other areas. I am sure they
will with pain someday also.
-Keith-
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Internet: Keith.Jones@f3.n157.z1.fidonet.org