I hope this letter will bring you up to date on my Arachnoiditis.
Five years ago, I was given a morphine pump. Over the four years it
has been increased from 3.00 mgs per 24 hrs. to the max of 29 mgs.
This was done to compensate for the increased pain and progression of
the Arachnoiditis.
For the last 18 months, I have been existing hour after hour in bed
or a few hours in a chair. I can not walk because of my unsteady
legs, my back and leg pain and also shortness of breath. My legs feel
like they are asleep and have a thousand needles sticking in them.
I was using the maximum of 29 mgs of morphine per day and had to go
to Jacksonville to have the pump refilled every three weeks. The trip
was so traumatic that I would have to stay in bed for a day or two
afterwards waiting for the pain to subside. In July of this year, I
had an MRI in Jacksonville that documented the progression of the
Arachnoiditis. On August 4th my pump was replaced with a pump that
has a larger volume capacity and was filled with dilaudid and
marcaine. This enables me to go longer periods in between refills. I
now go back every three months for refills. The new pump is set at
5.5 mgs. dilaudid and marcaine. Last week I had to have it moved up
14 mgs. to compensate for the increase in pain. I don't know what
adjustment I will have to have as the Arachnoiditis progresses.
The fact of the matter is that the morphine and other opioids
required to deal with the severe pain of this rare disease are
extremely detrimental to my COPD as you can see that I was in MICU 3
times for respiratory failure from over sedation from narcotics.
The pain continues to be so severe that I seem to be going up to a
higher dose with each office visit. Every time I have a increase in
dilaudid my breathing is getting worse. IS SOME ONE OUT THERE WITH A
PUMP AND ALSO ON OXYGEN???????? DOES THE DIDAUDID BY PUMP HAVE ANY
EFFECT ON MY LUNGS, AND BREATHING AT NIGHT. I HAVE COPD AND RETAIN
CO2 SO I KEEP MY SPO2 AT 91 WHEN I SHEEP IT GOES DOWN TO SPO2 85.
THEN MY WIFE TURN UP THE OXYGEN 1/4. AT THE END OF THE NIGHT I AM AT
4.5 L. I STARTED OFF AT 1.1/2 L. PLEASE HELP HELP