 SunE1's Story
I'm beginning this story at the point where my
pain became so overwhemling I just couldn't stand it any longer. I've had health
problems from Lupus for many years before I was disabled in 1998, however, this documents
what has transpired to bring me to my current condition.
I started off 1998 feeling great and was busy
working as an Assistant Director of technology projects for a large financial
firm. In February of 1998. The start of the downward slide into chronic
pain began with a broken bone in my foot. Although this
is a minor part of the story, it's what precipitated the onset
of Avascular Necrosis. It took many weeks for my doctors
to come to this final diagnosis. They founmd Avascular Necrosis (AVN) in both the right and left femoral heads (ball of the
hip). This condition is due to the break down of the blood supply to the
affected bone. At this point my left hip was in stage 1+ and had no pain and my
right hip was in stage 2+ (on a 4 point scale).
AVN (also known as Osteo Necrosis) can be caused
by several diseases and/or drugs. Two of which are Lupus and Prednisone. Since I
have Lupus and have had several serious flares, I have been on as much as 2
grams of metho-prednisolone a day. Therefore, it is unknown which is the cause
of my AVN. For more information about AVN, check out the National Osteonecrosis Foundation web
site. Although I've experienced pain since I was first diagnosed with Lupus, AVN has brought a
more intense pain than any I've experienced to date. I only hope that medical science
will soon find a cure for this condition. My surgeon recommended immediate treatment of both
hips through surgery. The recommended procedure is called a core decompression
and was recommended to be performed on both femoral heads at the same time (what
was I thinking to agree to this?). In this procedure the surgeon drills into the
bone and removes a core of bone about the width of a thumb from mid thigh up
into the femoral head. He also removed a large amount of bone marrow. The
removal of bone marrow is to reduce the level of pain. As the bone dies, it
increases the pressure of the bone marrow and thus increases the level of pain.
The removal of the core of bone is to potentially get the bone to
"revascularize". The revascularization would help the necrosis of the bone from
spreading so rapidly.
I had my core decompression on July 7, 1998. After
the surgery I was unable to bear weight at all for six weeks. This was the most
depressing time of the whole process. Not only was I in a great deal of pain
from the surgery but I had to live in our family room in a hospital bed since I
could not go up the stairs. I also could not shower and had to take sponge
baths. By having to put all my weight into my arms and shoulders in order to
transfer from the hospital bed into a wheelchair, I tore my rotater cuff in one
shoulder and tore tendons in the other. OUCH! Like I needed that. At this point
I got an electric scooter because I could no longer wheel myself in the
wheelchair. Eventually I was able to bear weight and the long process of
rebuilding the muscles in my legs began and trying to teach my legs to walk
again.
The core decompression was declared a success in
the Fall of 1998. On a repeat MRI in early Fall, it appeared that the
progression of the disease had slowed down. However since then, I think I've
come to believe that if you survive the pain of a Core Decompression, then the
doctors declare it a success. The cold affects my level of pain as does activity
and some positions. I am never without pain, however, I have found ways to keep
busy so that the pain is not the focus of my life. This web site is one of those
distractions.
Through the winter months of 1999 my pain had
increased considerably, with times of pain that was indescribable. My general
practitioner, Dr. Sarah Fletcher, modified my pain management meds to include
the Fentanyl Duragesic Pain Patch. The patch uses the same medical technology of
the nicotine patch and is used for chronic pain. Break through meds are needed
for acute pain. My doctor prescribed Vicodin for minor breakthorugh pain and
dilaudid for the times when the pain is uncontrolled. I use the dilauded rarely
since I do my best to control the pain ... instead of chasing it.
My presribed pain control regimine kept severe
pain at bay for about two months. But in March 1999, the pain once again peaked.
This time my doctor not only increased dosages, but sent me to my orthopedic
surgeon. My surgeon took x-rays and was able to see that my right hip had
advanced to stage 3 and my left was at stage 2. I was not a happy camper. To
make matters worse my surgeon told me I needed a total hip replacement (THR) on
my right hip> He also stated that he didn't feel comfortable performing my
THR due to my complex medical history. At first I felt very abandoned. Howevery,
looking back I believe he gave me good advice and I admire him for being so
honest about his comfort level in dealing with my complex health issues.
In finding a new surgeon, I felt it very important
that I selected the best and the right surgeon for me. I also wanted someone who
had other patients with AVN. I made a lot of inquireies and evenually selected
George Town University as that's also where my Reumatoligist and Neurologist
are. Also, the doctor I chose was selected as the best Orthopedist for joint
replacements in the Washington, DC, metropolitan area. My husband took me to my
first appointment and we took a notebook with tons of questions. I asked the
surgeon questions about how many THRs he'd performed, I told him about all my
health issues and asked what he would do to reduce complications during the
surgery and post-op. I asked about how many THR's he'd performed on AVN patients
and the success rate. He was very experienced with both THR's and with AVN
patients. He had a very good success rate with only one THR complication out of
31 AVN patients. I felt confident I'd found the right surgeon for me. He is Dr.
Brian Evans, and it did turn out that he was indeed the best choice. If you're
facing any surgery, be prepared with questions, take someone along... and don't
be afraid to ask tough questions about the surgeon's experience. Wouldn't you do
that if it were your car? Why not for your body?
The right hip replacement was more painful than I
expected. However after a lot of physical therapy and about 6 weeks for
recooperation I was feeling well enough to take a road trip in our motorhome to
our family reunion in Texas (we live in Virginia). I was amazed, by the time I
returned to Virginia I was getting around pretty well. Now I'm not saying that
the right leg was 100% at the 6 or even 8 week period... I still had problems
with pain in the thigh area for some time. My surgeon tells me that the pain is
the healing process and it sometimes happens to patients who have a non-cemented
procedure. The pain is due to the bone needing to grow through the prosthesis
while it is healing, it is apparently a slow process. This thigh pain isn't an
everyday occurence. It happens usually when I've overdone it. So I just need to
pace myself. There is some good news. My left hip hasn't advanced to a stage
where I need a THR. I'm praying I can wait for another year.
But wait.... there's more. I've been in a Lupus
flare since April of 1998. My symptoms have been primarily neurological. I have
problems with my legs not functioning and have seizures. I have been undergoing
tests to determine the right meds for my latest seizures that began in March. At
times things get better then worse again. As of this update (Jan 1999) my
neuroligist has put me on Neurotin for seizures and also to help with other
neurological problems. Since then I'm having less problems with the weakness in
my legs and has helped tremendously to get the seizures better controlled.
Unfortuneatly, the results of tests for cognitive problems revealed a good deal
of limitaion that was focused in one area of my brain. My neurologist wants to
do more testing. (updated 7/2000)
In March, 2000, I began to have severe pain in my
knees. It began in the right and then the left. At first I thought it was due to
increased activity since my husband and I were traveling in our motorhome to San
Diego. We stopped for 4 days in Arizona. I didn't move out of our recliner
unless absolutely necessary. We went on to San Diego to our son's wedding and
the pain persisted. By mid April the pain in my knees was much better.. so I
thought I had been correct about increased activity. But the pain resumed by the
middle of May.
When I saw my ortopedic surgeon in June 2000, I
got quite a shock. I thought he'd be telling me to set the date for my left hip
to be replaced. Instead I found out that both my knees are in very advanced
stages of AVN. The bottom of my left femur is completely effused with
AVN.(determined by MRI). The surgeon recommended a total knee replacement (TKR)
prior to my left hip because a total knee replacement requires more viable bone
than a hip replacement. I had the TKR August 8, 2000. I was quite surprised at
how much smother the TKR went in comparison to my right THR (total hip
replacemnt). I was able to be back walking fairly well within 4 weeks. It does
take a lot of hard work to get back to 'normal'. I had an MRI of my ankles and
was diagnosed with AVN in those bones as well. My surgeon said he's never seen a
case that has spread to so many areas of the body. Although I've not yet had the
MRIs of my shoulders, he presumes that AVN is in the shoulders as well. Since my
appointment just last week, my wrists are now in great pain. When I saw my
surgeon and asked him what I could expect, he said a life of pain and surgery.
It was most discouraging. Additionally he will not recommend me for ankle
replacements since they are still so new and have a high failure rate. I will
eventually need to have both ankles fused. The next surgery will be to replace
my right knee. He's leaving it up to me as far the level of pain I can
tolerate... as long as the bone necrosis does not advance to a point where
there's not enough bone to permit the knee replacement.
In the winter of 2001, I was disagnosed with Thymoma. This
is cancer of the Thymus. Usually the Thymus glad disappears
prior to puberty. However, in some mixed connective tissues
diseases (myastenia gravis, MCTD, Lupus, etc), the Thymus remains
in tact. In my case, a mass has developed within the Thymus.
So far the tumor has not spread outside the glad and hopefully
it won't. We watch it with MRIs once ever 3 months.
As of this month, October 2003, I'm going through chemo therapy
for MCTD (Mixed Connective Tissues Disease) which I was diagnosed
with earlier this year. Right now it' sout of control
and causing almost constant fevers, chills, muscle and bone
pain, as wella s extreme fatigue. Hopefully the chemo
will do the trick and get me back on track. Right now
most of my days are spent in bed or in a recliner. I rarely
have enough energy to go out, even to church. Mostly I
try to save up any energy I have for my family (especially the
grandkids). My family is a wonderful source of joy!
Even though I've been through many health problems, my faith
in God and my belief that I am blessed is not shaken. Oh
yes there are times when I've had a pity party or two. But
with the help of friends, family and my faith, I believe my
life is quite full. I'm sure that must sound strange,
but I gues I have to say, it's as full as it can be. After
all we are more than our diseases and pain. I love the
crafts I do and love spending time with friends and family.
If you've read this whole page, then probably you
are in pain yourself.. and I'd like to thank you for taking the time to read it,
and invite you to visit the Chronic Pain Support Group's forum on
Delphi. We have a message board there where you can post your story and also
read other's stories as well. We also have chat rooms where we take our minds
off the pain, share information, vent and cry when we need to. Last Update: October 17, 2003
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