Post car accident - inflammation and extreme back pain Posted: 11-07-07 21:13pm
Sorry guys, this is a long one! Have
suffered with pain in my back and left leg
intermittently for 30 odd years (I'm 47).
After a very bad car accident in 94 and
following much cynicism from many docs I
was finally diagnosed with a prolapsed
disc at L5/S1 and had spinal fusion and a
nerve decompression in 97 which worked for
a while until boney overgrowth dug into my
sciatic nerve again. I subsequently had a
second decompression in 98 which was
unsuccessful. The pain was exacerbated to
the point that I was in constant daily
agony, getting about in a wheelchair
having to rely on others for the simplest
of tasks. After many nerve blocks, facet
joint injections, osteopathy, acupuncture,
an intensive pain management programme and
a host of other stuff I still have bad
days where I'm completely immobile or
better days when I walk with a crutch. The
pain varies from unbelievable to bearable,
it's always there in my back and in my
leg. I've been told there's nothing else
that can be done for me except for pain
management so I've been left taking daily:
gabapentin, mexilitine, baclofen,
meptazinol, diclofenac, tramadol and when
it's worse add methadone, diazepam and
dihydrocodeine into the mix. I do
stretches and pilates when its better
which seem to help. I'm going thru a
really, really bad relapse which has
lasted 5 weeks so far and the pain's
breaking through. I've been seeing a
great osteopath (after many unsuccessful
attempts) for 8 yrs but he's recently left
england. The guy he recommended took one
look and said he couldn't do anything with
that much inflammation around the damaged
area and he couldn't understand why I
wasn't having further investigations being
in that much pain... hmmm me too!!!!
I'm seeing my GP tomorrow can anyone offer
me any advice as to what else is out
there... treatment wise or new meds...
that I can talk to her about because I do
believe there's got to be something more
to help me out of this pit. Would really
love to hear from someone soon.
Noelle
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RichT
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Posted: 11-08-07 11:42am
Hello Noelle,
It hurts to just know and understand in a
small way the pain you are in. My
thoughts and prayers are with you Noelle.
Noelle, you certainly have tried many ways
to overcome the pain you are in.
Obviously some thing of things are not
right that need to be made right or at
least greatly improved.
Do I understand correctly that you live in
the UK? Have you had an MRI recently, and
if so did the images give an indication as
to what is wrong? Lastly, have you
received "second" opinions from several
spinal surgeons? Sorry for the questions,
I'm just trying to better understand
things.
Take care.
RichT
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Noelle
New User, Becoming EHEALTHy
Joined: 07 Nov 2007 Posts: 12
Noelle Posted: 11-09-07 03:34am
Hi there,
Thanks so much for your reply, sorry it
was such a rant, I'll try and answer the
best I can, bec of all the meds don't
remember much of the last 10 yrs.
Firstly yes I'm actually living in London.
Over the years I've seen many surgeons
under diff disciplines, had many CT and
MRIs, and have heard many varying
opinions....one doc actually told me 'I
should put some lipstick on, a pretty
dress and pull myself together and try to
get out of bed'.... great!!!! Finally I
was lucky and sent to a wonderful
orthepedic surgeon who stated 'of course
there's something wrong wth you, let's
find out what it is'. My last MRI, just
bef 1st op (where to my best
understanding) they discovered the disc
had split and the fluid inside had leaked
out causeing damage to the nerve, a lot of
scar tissue was also djscovered. After my
2nd op was unsuccessful he was a bit
stumped. Things got worse so I was then
referred on to various pain clinics where
they played about with my meds, tried diff
types of nerve blocks but not much long
term help there so finally sent me to the
iput programme. There I was taught
techniques such as pacing, relaxation,
positive thinking, setting goals and how
to approach 'set-backs and relapses'. I've
found ways of fitting these into my daily
life, not very well if I'm really
truthful. But nothing seems to help during
my really bad relapses, esp this one.
My GP has presently put me on MST for a
week to see if that calms the pain down
and then will refer me to a neurosurgeon
but unfortunately that takes time over
here and I don't have the funds to go to a
private clinc. So begins again the waiting
game.
Thanks for your thoughts and prayers and
I'm truly grateful for any help and
understanding.
Regards. Noelle
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RichT
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Joined: 22 Jul 2007 Posts: 897
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Neurosurgeon Posted: 11-09-07 12:00pm
Hello Noelle,
Thanks much for answering my questions.
Much appreciate, as it helps me better
understand your "doc history", etc.
I was SOOOooo very glad to read that you
have an appointment to see a neurosurgeon.
That is the best person to see in my
opinion. May I ask when you will be able
to see the neurosurgeon? Hope they can
work you in the near future. Whoops, just
noticed I misread what you had written.
May I suggest that you call your GP on
Monday and have him make an appointment
for you as soon as possible. I certainly
don't think he should wait/waste a week to
see how the MST works for you.
Please do keep me/us updated.
May the good Lord give you some peace from
your pain.
RichT
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Noelle
New User, Becoming EHEALTHy
Joined: 07 Nov 2007 Posts: 12
Gps & Mris Posted: 11-12-07 23:31pm
Hi there,
Sorry hvn't been back... WOW.... MST sure
knocked me out for few days...Pain's eased
up bit except when I move so improvement
on how it was anyway. Trying to hurry
things along with GP, 'NHS' long slooow
process over here so keeping fingers
crossed. If anyone esle can make any
recommendations for some
great/understanding neurosurgeons over
here in London, sure would appreciate any
help.
Thanks again for yr kind thoughts RichT.
If you don't mind me asking and if I'm not
being too nosey how are you doing?
Regards, N.
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RichT
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Joined: 22 Jul 2007 Posts: 897
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Posted: 11-13-07 09:31am
Hello Noelle,
Glad your pain has eased up a bit with the
MST, but knocking you out for a few days
isn't a very good "side effect". I
remember when I was taking hydrocodone, I
literally slept the days away. After a
couple of weeks I decided I wan't going to
live in that "state", and slowly began
cutting down on the medication.
Is MST a narcotic medication?
Good for you in trying to hurry your
doctor along a bit regarding an
appointment with a neurosurgeon.
You asked if someone living in the London
area could make a recommendation to you
for a neurosurgeon. Noelle, may I suggest
that you start a 2nd thread and perhaps
title it "Help - London Neurosurgeon
Needed", or words to that effect. It
would hopefully catch the eye of those
from the London area who know of an expert
neurosurgeon.
How am I doing? On Thursday morning I
received my 2nd epidural injection. By
the afternoon the pain in my lower back
was disappearing. Friday, Saturday and
Sunday I felt great. Then about 5 am on
Monday the ole back was hurting. Did some
gardening, etc. on Monday and the back was
feeling much better. Then last night back
to the lower back pain. The pain is
mostly gone now after moving around a bit.
Must be my arthritis acting up with this
lousy cool damp rainy weather we are
having. No complaints though my ole back
is much better than it was the first part
of this year thanks to my pain management
doctor.
Hope your day goes well.
RichT
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Noelle
New User, Becoming EHEALTHy
Joined: 07 Nov 2007 Posts: 12
Mst Posted: 11-16-07 02:20am
Hi there,
MS Contin or Morphine Sulphate is a
controlled-release tablet containing
morphine, typically taken every 12
hours--only twice a day. (that's the
official blurb anyway), I know it's not so
good to be on these types of meds but it
sure feels good to get some sleep finally
and at least i've stopped being the
scary,shouting,weeping, madwoman to my
family for a few hrs!!!
Grt idea about 'thread'....nxt project
after nxt nap.
Glad to hear things are going well for
you....mostly.,,,and grt to hear you've
got yourself a helpful and understanding
p.m doc. Hope some better weather's on
its way soon.
Stay in touch. Take care,
Regards. N
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Tyton
New User, Becoming EHEALTHy
Joined: 25 Sep 2007 Posts: 29 Location: ,
Posted: 11-16-07 10:19am
In response for your request for other
peoples input and suggestions, I’d like
to butt my nose in here for a moment and
say hi to both Noelle and RichT, I’d
also like to say that while I can’t add
much to what has already been said, so
much of your history resembles my own that
I do have some food for thought and a
couple of recommendations that might help.
You mentioned that you have obtained some
relief with exercise, pilates in
particular? The biggest tool in my box of
pain management toys and tools (and you
know the ones that I’m talking about),
is exercise, pilates in particular.
Exercise is secondary to my meds, which I
can’t move or function without, is the
greatest and best of all my tools.
Several years ago, I had the good fortune
of working with a UK trained (Ilive in the
USA) physical therapist who had crossed
trained as a fitness therapist. Our goal
and treatment objective was to make my
muscles stronger than my bones and
although the process exacerbated my
symptoms and there were periods when if I
wasn’t in therapy I was in bed, there
came a point where we started to gain
ground and the stronger that I got the
less severe the pain became. Although it
hasn’t eliminated my pain it has reduced
it and like you, I’ll take anything in
the form of improvement that I can get.
Since most people living with back pain
become physically degenerated as they
decrease their activities, most people,
especially those with back pain, can’t
tolerate the pilates for beginners
programs and will require the assistance
of a physical therapist, fitness trainer
or a certified personal trainer (one who
has obtained the necessary training to
prescribe for people with spinal issues)
to modify and ease them into a pilates
program. DO before you begin any exercise
program; obtain a full medical evaluation
and approval of any proposed exercise
program with your doctor.
Since you have obtained some relief during
your MST trial will or has your doctor
started you on a regimen of Oxycontin or
MS Morphine? If so, you might want to
talk with your doctor about any bothersome
side affects. Most people, including
myself, are bothered by “fuzzy”
headedness, mood swings and the feeling of
being fatigued and tired all the time
while taking MS morphine. The same
people, myself included, don’t usually
have any noticeable or bothersome side
affects from Oxycontin. Both are opiate
based, time released formulas, nearly
identical to one and other in terms of
pharmacological uses, they simply have
different side affects.
Sorry for the lengthiness of this, but
just one more thought for you to consider.
Once you do get to an ortho or
neurosurgeon, depending upon their
findings, you might consider asking
him/her about your candidacy for a
neurostimulation implant or pain pump
options.
Good luck and best wishes,
Tyton
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RichT
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Posted: 11-16-07 17:14pm
Hello Noelle,
Thanks for the info on your pain
medication, MST.
I truly hope that the medication is only a
stop gap measure until you can see a
neurosurgeon. MST is one powerful
narcotic medication and can become very
addictive very quickly. I am gald it
helps you get some sleep, however -----.
Good that you also know its not good to be
on such medications.
I'll look forward to your new thread, and
HOPE people in the London area respond.
RichT
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Noelle
New User, Becoming EHEALTHy
Joined: 07 Nov 2007 Posts: 12
to Tyton Posted: 11-20-07 08:09am
Sorry it's been an age before I've replied
to you.I've been trying to get another
thread going re a london based
neurosurgeon so that's taken over a bit.
Thank's for all the advise. I started
pilates thru a friend's recommendation,
she bought a machine from qvc (now don't
shudder) and I took the booklet along to
my trusted oesteo, who studied it from
cover to cover, thought it might help and
showed me what excercises not to go near.
I bought a machine (next model up infact)
and another friend who's a personal
trainer worked with me thru the dvd until
I got used to the exercises, after that I
was off ....I love it....and the weight
loss was a great added bonus.
Unfortunately MST pain relief wearing off,
so another chat with GP in order, will
mention the 'oxycontin' (tho we might not
hve it/or it's under diff name in uk). I
was recommended for internal nerve
stimulator many years ago but was on
wafarin at the time and the op was too
dangerous apparently. I've heard good/bad
things about these so I'm bit wary.
What's a pain pump?
Anyway hope this finds you having a 'good'
day. Take care and thanks again,
