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Feb 16, 2015 03:32PM
Feb 16, 2015 05:17PM
First, I want to say it is a pleasure to meet everyone; I have waited a long time to speak with anyone diagnosed with RIBP. It looks like there have not been too many males posting but I will join the crowd. Here is my story.
July 2009 I had a melanoma removed
from my scalp with no lymph node involvement.
The melanoma metastasized to a lymph node in my neck November of 2009. Due to insurance hassles and scheduling, I
did not have surgery until the end of January 2010. I had 39 lymph nodes removed along with the sternocleidomastoid
muscle. The surgery and recovery went
great. Because so much time passed, the
node got to 2 cm which meant radiation.
I got high dose for 5 days and it went well. A couple weeks later I started interferon for
one year and completed in March 2011.
I was doing great until May 2011
which was 15 months after radiation. I
woke up in the middle of the night with a knife searing pain in the bicep of my
dominant arm. Over the next 6 months I
began to lose the function of my arm.
Each day was better than the next.
In November 2011, I was finally diagnosed with RIBP; the Dr.’s never
said how bad it really was. They seemed
satisfied that the diagnosis was not due to cancer and sent me on my way. By Christmas, I could not move my arm at all but
my hand could still function.
As distressing as it was, it came as
a relief that I finally knew what I had.
Knowing the cause of my paralysis, I took to scouring the Internet for
answers. I knew that there were specialists out there who could stitch together
nerves. But I wasn’t sure what I was looking for. I found the name of a
specialist, and during a consultation, I learned that the treatment for my condition
was a nerve transfer surgery. Nerves
control muscles and there are specialists out there that can take a fully functioning
nerve, by pass the bad nerve, and attach it to the muscle that is not
functioning. The difficult part is re
training your brain to now control a different muscle. I found a surgeon who specialized in the
procedure and went for another consultation. During this appointment, the
specialist told me he didn’t think an EMG was necessary as part of his
evaluation. Something stuck in my mind about that, I had a bad feeling and decided
against this surgeon and continued my search. I returned to the Internet and found
the name of a specialist in New York City, Scott W. Wolfe, M.D., director of
the Center for Brachial Plexus and Traumatic Nerve Injury at Hospital for
Special Surgery. I called the office,
faxed them 30 pages of records and within a week, they’d scheduled an
appointment. When I met with Dr. Wolfe,
his approach was more thorough. For instance, I underwent EMG testing as part
of my initial evaluation and another EMG test the night before the surgery. He
listened to me, took his time explaining things. He also informed me of the 200 + nerve
transfer surgeries he performed, none were for radiation damage but he was
fully confident my surgery would be successful.
The nerve transfer surgery that Dr. Wolfe described was different from
the one the earlier surgeon had recommended.
Dr. Wolfe told me that the nerve transfer surgery would take eight hours
rather than four, because he would do a double nerve transfer to the bicep not
a single one, which would improve my chances of recovering movement. Also, the
other surgeon I had considered said that my ability to shrug my shoulder would
be lost, but Dr. Wolfe said, no, that wouldn’t happen. The surgery involved numerous nerve transfers
including transferring nerves from the forearm to the bicep muscle and one of
the triceps nerves went to the deltoid muscle.
They harvested pieces of healthy, expendable nerves from one location
and used them to reconnect the ends of the damaged nerves to help restore my ability
to move my elbow and perform lifting. I was
fortunate to have identified the problem and pursued finding a treatment in the
earliest stages. Studies show that if
nerve reconstruction surgery is done within six months after a nerve is damaged,
patients do far better. I stayed
overnight at the hospital and then kept my arm in a sling for six weeks while I
recovered at home. Soon after the procedure, I began physical therapy with a
hand specialist. Three months post-surgery, I felt a flicker in my arm where I hadn’t
felt anything for months. This flicker is usually the first sign that the
surgery has worked. Since then, my brain has been learning to reconnect to the
nerves that have been transferred, and more and more of my mobility has
returned, including my ability to lift a glass, turn a key and open a door,
button my shirt and, yes, shrug my shoulders.
While I still have many limitations, I am very grateful for what I
found. All I can think about is how
people told me that nothing could be done, while every day my arm got worse. Now, I have movement where there had been
I encourage you to watch some you
tube videos and lectures on the web from these two Dr.’s. While they may not have a solution for you, they
are the best in their field and may provide some insight or hope to a diagnosis
that you are suffering from.
Dr . Scott Wolfe, Hospital for
Special Surgery, New York City.
Dr. Susan Mackinnon, Washington
University School of Medicine, St. Louis, MO