I had that experience earlier this week. I have struggled with explaining that there is no cure for arachnoiditis for years now. I am never going to “get better”. I shrug and say I’m Fine, because if I told you the truth of the pain I live with daily, you would run away from me.

I know, because so many of my so called” friends” did.
Louise, the author is a co-member of an on line support group for arachnoiditis ARACH_FRIENDS at yahoogroups.com.

She was writing in response to a member, whose wife suffers from
Arachnoiditis, and was considering yet another surgery, for relief.

Louise wrote the following;

“The truth of the matter is that doctors are in the dark with these pathologies. There is very little research being done. So, the real reason why people get worse is because we are used as guinea pigs. Surgeons cut! Surgeons will try to remedy the situation, trying ‘’something, anything” to reduce the pain, a shot in the dark.

The truth of the matter is that more interventions will aggravate arachnoiditis THAT has been proven. Also, once a person starts on invasive interventions then more damages are done and more interventions must be done.

Can I prove it? Yep! From the myriad of arach sufferers who believed doctors and promises of getting better if they would undergo, yet, another surgery. Your doctors do not know what these disorders are about because they want her to do physiotherapy. Arach sufferers will tell you that physio exacerbates arach and increases the pain. But doctors do not know that because they don’t bother asking the arach sufferers. Each person on this board could teach the doctors in medical school on how to recognize arach, how to manage it.

Am I being blunt? You bet! I am so tired of reading about the results of surgeons crippling honest and trusting people who simply HOPE for a miracle and believe what the doctors promise. That is, what we all did and look at us now, in pain, for the rest of our lives, some of us worse than others.

Quality of life! Taken away from us because the surgeons were fool enough to think that they could do miracles when all they had to do is to admit they had no idea or clues what to do. Your wife acquired arach,. So the best thing to do is to find a doctor who has treated and been exposed to these disorders to start with.

And for your wife’s sake, don’t just ask them if they have the knowledge, investigate their experience. You might be surprised to find out that they know very little and are using your wife as a guinea pig to learn more about these disorders.

Louise Carbonneau Vermeiren is the owner of arachnoiditiscanada.com
Louise, my sincere thanks!

The good news is that the suppression antibiotics seem to be working.
My CRP and ESR were down from last month.

Having a bone infection (Osteomyelitis) in your spine is no fun on
any given day, some days when coupled with arachnoiditis it becomes unbearable.

I was sharing some of my pre study anxiety with SonnyBob this morning.

This was his response.

Isn’t it great to have sympathy?

Click photo for full sized image.

Life isn’t always a box of fresh litter……………
Right now it’s icky. My blood levels are very high
for infection markers, I’m running a fever again,with chills and
The pain level has gone through the roof.

After 2 days at Shands U. of Fl. hosp last week, it has been decided to have another bone biopsy, this one with me asleep.

It’s looking like the infection in the vertebrae and disks has flared again.

Tigger is thinking of ways to perk me up.. Isn’t he the most
wonderful friend?

The issue is I have hardware in my back, called an inter-body cage, and is the source (they think) of this infection that has in two years resisted 8 surgeries, 5 of which were to drain abscesses off of my spine. Eighteen months of antibiotics, most of which were IV, and a six month long c-diff infection (that’s an infection in your colon, extremely dangerous and painful.) Most times a person in this situation is given suppression antibiotics, is monitored and life goes on.
There is a surgery that opens both your abdomen, and back
to reveal both sides of your spine, scrapes the infections out , refuses the spine,
nope not going there.

Now a year later, the infection is still there and I cannot have suppression antibiotics, (needed so the osteomyalitis and diskitis infection does not flare back up) because of the c-diff.

I did however come down with a nasty case of strep throat and bronchitis, following the visit to Shands infectious disease dept.

Yes I did wear a mask, no it did not help.

So last week, I saw my local infectious disease doctor, who proscribed 5 days of levaquin antibiotic and shuddered.
He asked me if I still had any oral vancomycin left, and I just nodded.

Today, I still have a very sore throat and the c-diff is back.

And just for fun, TheMasterOfTheUniverse is in bed for the second day in a row, with some kinda flu.
Damned if you see the doc and damned if you don’t.

It’s been a hot summer in Florida, no real news there, except it has also been very, very dry…The roses are flourishing this summer, responding to care and feeding, what a blessing to look out and see the rainbow of colors in the front rose bed!

TheMasterOfTheUniverse’s mother had a bad car accident a couple of weeks ago, hit the accelerator instead of the breaks, and went through the wall of her doctor’s office.
Thankfully she was not seriously injured (she is however in a rehab center due to knee and foot injuries.) and no one else was in the office.
We thank God no one else was injured.

Click photo for full sized image.

My health continues to be up and down. We have decided that I will not undergo any further surgery. My body is now reacting to antibiotics like they are a bad toxin…
I am completely at peace with this decision.
I continue to need morphine for pain control for the arachnoiditis
And spine damage and infection, and the doctors don’t believe that will change.

On a cheerier note, our grandson Smitch has been here for the summer.
As with all teenagers, it’s been a mixed blessing!
Johnny our son was laid off from sprint. So he’s dealing with some major depression over that.

LoliTheBigDog, and TheBengalBrats are in excellent health and
Full of get up and let’s play!
I hope all of our friends in the Blogosphere are well and I am going
To make a concerted effort to catch up!

Mog reminded us that it’s out turn to host The Carnival Of The Cats this coming Sunday!
We are all pretty excited about that!
For all the mews that is news…
Visit
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Some days I have Nada zip for energy.. and other days..
Its one step up from that.

The bone biopsy told us nothing.. so a terrible trauma on
a chance, that we would learn something.

Nothing has changed with my spine, of course
the arachanoiditis, will be there for ever.
Hopefully thought the infection has gone dormant.

We know it’s still there but…

On another note, the c-diff returned again.
I am off all oral suppression antibiotics now, except the oral
vancomycin. I also take 2 probiotics twice daily.
So perhaps now my body will have a chance to heal from this colitis.

The boys are all about napping these days.. to hot to run and play..
SonnyBob posed for TheMasterOfTheUniverse yesterday
while I was at the infectious disease docs.
He is such a photo ham!!!

Click photo for full sized image.

]]> http://www.petsgardenblog.com/2009/06/09/just-tuesday/feed/ 0 http://www.petsgardenblog.com/2009/04/20/sir-woodys-eyes-and-a-update/ http://www.petsgardenblog.com/2009/04/20/sir-woodys-eyes-and-a-update/#comments Mon, 20 Apr 2009 13:11:51 +0000 pet http://www.petsgardenblog.com/?p=1534 How can you resist those eyes????

We saw the infectious disease team at U.of Fl. Shands Hospital last Wednesday.
The 3 part guillium bone scan was inconclusive, while the MRI showed
ongoing diskitis, and osteomyelitis at the L-4, L5, S1 level. As well as nerve roots completely
encapsulated at those levels. That is arachnoiditis. Here is a site that shows what arachnoiditis does to your nerves and spinal cord.

Their recommendation is to biopsy bone from the disks and from the vertebrae.This will be done guided by CT scan.
Sounds like fun huh?

If the infection is “acute” then more surgery will be done, if it has become simply chronic, then a suppression antibiotic will be given.
MRI’S and CT scans every eight weeks.

The problem child is that the bones are so badly eaten away from the infection, that their is nothing to fuse to.
They strongly suspect that the cage left in my spine at L-5
is what is holding the infection in the bone.

Once again, damned if ya do, and damned if you dont.

So well.. thats what we know right now.

The Price of Pain:

The cost of prescriptions, medical treatments and devices, surgeries,
worker’s comp insurance, disability payments, physical therapy,
psychological therapy and such. Yes, you can add all those things up
and get a total cost, but that is not the price of pain. The price of
pain is more…

The price of pain is the loss of self-respect when you can no longer
complete personal grooming, cook meals or take care of your family the way you want to…

The price of pain is the loss of rewarding employment when you cannot
perform the tasks to do the job you love…

The price of pain is the loss of quality of life when you can’t go
hiking with your children or dancing with your spouse…

The price of pain is the loss of relationships with friends and family
when the pain and medication makes it impossible to even have a
conversation or attend important events…

The price of pain is no longer being independent when you cannot drive or shop for groceries alone…

The price of pain is the depression and mental anguish the pain brings
with it…

The price of pain is the loss of sleep and the resulting problems sleep
deprivation causes…

The price of pain is the side effects of the medications taken in an
attempt to survive the day…

The price of pain is when you lose who you are in the pain. These
things and more are the price of pain. It is the living every minute
of every day around what your pain level is or when you can take the
next dose of medication, praying it will bring more pain relief than
the last dose. When happiness is 3-4 hours of pain-free sleep or a day with only 75% of the usual pain…

The price of pain is paid by the person in pain as well as those who
love them…

The price of pain is watching someone you love suffer day after day,
night after night and you are helpless to ease their pain…

The price of pain is when your child asks “Can you play with me, if
you are feeling Ok?”

The price of pain is beyond money, the price of pain is beyond words,
the price of pain is all encompassing. The price of pain seems endless…

The price of pain is there until the day that person is free of their
damaged body…

The price of pain is all these things and more. But the pain is not me
and I am not the pain…

The pain is part of my life, but the pain will Not be my life. I will
fight, fight, fight. And though the pain fills my life, it will Not take
my life. Each day I live, I fight and show the pain who I am. Even
though the pain may take much of my life it will Not consume me.
I will Not allow the price to be that high…

The price of pain is all this, but I am more…!!!

Click photo for full sized image.

DR. Lowell shared the results of the CT scan.
He see’s no changes.

NONE

Which means, the infection is still eating my spine.
He again offered the surgery as a possibilty.

I again refused it. So the plan is to continue the IV antibiotics. Repeat MRI and CT scan in 3 months.

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I waited sed, hissed and snarled)
at my surgeon when he called last night.
He spoke to TheMasterOfTheUniverse first..
Probably a good thing….

I didn’t sleep much. Well 2 hours isn’t much.

I kept thinking.. if nothing has changed ..
Then why do I feel so much better?
Why is that dang infection still showing up..
WHY WHY WHY????????????????????????
I have no answers.. The nerve clumping is
still there without contrast, so the arachnoiditis is
also unchanged.

The miracle antibiotic aztreonam arrived on Wednesday.
It’s in a gravity fed canister. Instead of IV push every 8 hours..
Now its just hook up every 8 hours…
Dr. L. wants a CT scan in 6 weeks, after I finish this round of IV
Zyvox, and the aztreonam every 8 hours for the next 14 days..

So… Please keep purring and praying….