Re: DJ's Surgery

[Guest guest]

Hi Jackie, all fellow RSD'ers and the unopinionated one!

Just to reassure everyone about my upcoming surgery, I have explored all

other avenues of treatment, many different meds, acupuncture and massage

and nothing has helped short of taking so many meds I don't know who I am

or my own name. I have to proceed with the surgery as it is the only

option that actually addresses the physical problem at hand. The

peroneal nerve, which runs from the front outside of the knee along the

fibula basically straight down to the ankle, has an impingement at the

fibular head, the small bony protrusion at the outside front of your

knee. Every time I bend my leg it is like bumping your " funny " bone at

the elbow, burning, stinging, shooting pain. I am 5''10 " tall and weigh

116 pounds dripping wet. Not enough cushion for the nerve. I cannot

live with this like it is so I have to proceed.

My surgeon is a plastic surgeon who thrives on making people look better

so they feel better about themselves. He is also a specialist with the

peripheral nervous system and the best in the area for my kind of

problem. He is hesitant to do the surgery because I do have RSD but I

have a " mild " case of it and we have done all necessary precautions,

treatments that can be done with no success. That is the only reason he

has decided to go ahead with the surgery. At this point the only thing I

want is relief from the pain and I don't care what has to be done to

achieve that. I have thought about this surgery since March very, very

carefully. I have weighed all the risks (death, infection, worse pain,

possible partial paralysis) and have decided to go ahead with it. The

surgical procedure I am having has " never been done before " but it is a

simple mechanical procedure. He will lift the peroneal nerve, detach the

gastrocnemus (sp) muscle from the femur, lay the peroneal nerve under the

muscle and then reattach the muscle to the bone. There will be no

implants to deal with and he is not taking anything out unless he runs

into a problem. He is going to have me on a constant epidural for pain

control so the RSD won't kick in. The way it works is it is inserted

into the spinal column where the nerves transmit pain signals to the

brain thereby interrupting the pain signal transmission, kind of like

cutting an electrical wire to stop it from transmitting. I have had this

before and it does work much better than a morphine pump for me which

makes me very ill. I have had 3 surgeries since October 1999, 2 on the

RSD leg, and I have not had a major flare-up because my doctors have all

taken the necessary precautions. The pain is at it's highest, about 12+

without the meds and with the meds it comes down to about a 6. My doctor

has approval for overnight but he is going to keep me for 3 days for the

epidural for pain control. He is very compassionate and he wants to help

me feel better. He thinks this surgery will work, otherwise he would not

proceed. I have twisted his arm and talked him into it just like I did

with the vascular surgeon in March and the orthopedic surgeon in October

of last year. I can be very persuasive when I want to be.

My surgeon has consulted with colleagues across the country including

those in Bethesda, UCLA and Salt Lake City regarding my problem and the

proposed surgery. While this would be better tested on a patient without

RSD, I am his best candidate. He does have 2 other patients with the

same problem but they don't have RSD and are not open to the idea of an

" experimental " surgery. Every treatment I have had for the past 11 years

for RSD has been experimental and I am an old hand at surgery having had

16 surgical procedures in the past year. His other patients do not have

the drive I do or as much motivation. I have attacked this problem

aggressively and refuse to stop until it is taken care of. He is going

to do everything humanly possible to make sure this is successful. I

know the anesthesiologist who will be handling my pain control and he is

an excellent doctor as well. They know how hard I have fought my RSD and

how much I have had to work to control it. They want to help me with my

battle and want me to get better. I attack things head on and expect an

acceptable solution to any problem, no matter how difficult it is.

Thank you for caring Jackie and Deb and Jo and everyone, I deeply

appreciate each and every one of you. Please rest assured this is the

right thing for me to do. I have thought and thought and thought about

this and I keep coming back to the question " What else can I do to ease

the pain? " There is nothing else besides an implanted SCS or morphine

pump and they come with their own risks. I want to do this and I know it

will work. My doctor is the best and I trust him completely. I will be

in good hands and he is going to keep me in the hospital to make sure the

pain doesn't get out of control. I will also be in a leg brace that will

keep my knee straight until the muscle reattachment heals. He is going

to put me on a machine that will bend my knee to a certain degree each

night to prevent adhesions, called a CPM machine I think. I have already

had my monthly visitor so I won't have to worry about that!! This is the

best possible time this could be done and I am ready to get it over with.

My son will be away on vacation so I won't have to worry about him

either. All this has " fallen " into place and I know in my heart it is

right. Keep me in your thoughts and prayers and I will be remembering

each and every one of you. Take care, Debbie/DJ

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[Guest guest]

Hi Debbie/DJ,

I believe you when you say that you've thought this surgery out carefully and

thoroughly. We've talked about it several times. I'm of the same opinion as

you somewhat, that if you can just remove the pain/injury, or lessen the

pain, the RSD will ease a little. I, too, was on an epidural when I had my

last knee surgery (which was 3 years ago already!!!). My RSD did not

escalate from the surgery, as far as I could see, it simply reverted to it's

prior stage. I am going back to my knee surgeon on the 24th to discuss the

option of cleaning up the knee a little and rid myself of some of that pain.

I won't do it unless he can guarantee some kind of pain relief that's

somewhat long lasting.

I am hoping with your attitude, and with the power of positive thinking (and

some prayers from your friends) that this will lessen your pain enough to

allow you to get to a level where you can live life again. I truly hate to

hear you say that you will sink into a deep depression if this doesn't work.

Please, give it an ample amount of time before deciding it hasn't worked.

And, if you start to get depressed, YOU CALL ME. As a matter of fact, if you

would, send me the name and/or telephone # of the hospital where you will be

at (FELICE, PLEASE DO THE SAME). I'm a mother hen and must make sure my

" peeps " are ok. My daughter Krisi calls of her loved ones her " peeps " -

short for people.

Trust in your Doctor, and remember the power of prayer and friends. We're

all here for you, we're all hoping as hard as you that this is successful.

God knows if we have to make you an honorary RSD'er because you're in

remission, we'd all be happy to do it.

You're in my thoughts, and I'm here if you need to talk.

Hugs,

Jo