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Before being diagnosed with Stiff Person Syndrome (SPS) in April, 2010, it was believed that I had Idiopathic Generalized Torsion Dystonia. My Neurologist in early 2008 told me he would consider Deep Brain Stimulation (DBS) to treat it, but I needed to see a Pain Management Specialist for the spasticity in my legs and lower back before he could warrant such a highly intrusive surgery. I did not tel him at the time, but there is no way on Earth I would allow anyone to drill a hole deep into my skull! It took 8 months to get the referral from my insurance company to see a Pain Management Specialist, because they did not have one in-Network who dealt with Movement Disorders. In September of that same year, I did see Dr. Daniel Kim. He ordered two trials of Intrathecal Baclofen. The first time they injected 50 micrograms, then, during the second trial they put 100 micrograms into my spine. This procedure consisted first of an evaluation of my spasticity and rigidity. They manipulated my hands, arms, feet, legs, and trunk and took extensive notes and measurements. Then I went into the procedure room. Here, the doctor hurt me. Sorry. It is very similar to a spinal tap. They inject the Baclofen directly into the spinal column. The injection is very quick, and the pain is very brief. My problem was staying still. I was not accustomed to laying stil on a hard table, and you MUST remain stil for the injection. I wish I could have taken a couple of Valium or Ativan before this, but I did not want to influence the outcome of the trials. Then I returned to the big room, where I waited, and waited. After the Baclofen has had a chance to flow through the cerebrospinal fluid, which is two to three hours if I recall correctly, then they do the spasticity and rigidity test exactly as before. During this process, there was a representative from Medtronic present to assist the nurses, and assure an accurate assessment. My representative had to come from Salt Lake City, Utah. The 100 microgram trial was done approximately two weeks later. During the first trial, they remarked that I responded well in some areas, but very little in others. During the second trial al were impressed. Including me. Thiswas sent to my Primary Care Physician. I was referred to Dr. Daniel Lee, an Orthopedic Surgeon, to implant the Medtronic SynchroMed II Baclofen Pump for Intrathecal Baclofen Therapy (ITB).
I was admitted into the hospital early in the day, was cautioned about things that can go
wrong, as with any surgery, even minor. I was nervous. I was very spastic. I was given IV
Valium even before the anesthesia. We discussed the location of the pump, etc.
Then I was wheeled into the surgery prep room and was put under general anesthesia.
When I awoke 2 hours later, it was al over. I was only sore. Not in much pain. But I had to
take it easy for a couple of weeks as the pump is actually sutured to the wall of the abdomen.
And the hole in the spine where the catheter entered needed to heal. Again, there was a
representative from Medtronic present for the entire procedure.
Pain associated with trials and surgery was a spinal headache. Extremely painful! I was
given many medications for the pain, and the surgeon suggested a blood patch be done by
my Pain Management doctor, which he did not do. Instead, he gave me Morphine, Tramadol,
steroids, Percocet, and Dilaudid! None of them helped. I will tell you how to get rid of a
spinal headache (which is even a small leak of CSF). Lay flat on your back for about an
entire day, taking care not to put too much pressure on the location of the lumbar puncture. It
will go away. Caffeine also helps.
My catheter goes higher than usual up my spine because the surgeon witnessed one of my
seizures, and feared I may dislodge the catheter.
Approximately one month after the surgery, the first of the Baclofen was inserted into the
pump. These are cal ed "fills"; duh. A syringe is used to withdraw any remaining inside the
pump, and then a different one is used to fill it. All the Baclofen you are to receive (likely
40ml) is in one syringe. Keep in mind that the pump is under your skin, so there will be a
prick when they do the fills. It is not bad at al , especially if you remain still, and have a good
doctor. He has to locate the tiny hole where the needle goes, on the surface of the pump.
The pump fil s in about 30 seconds. It goes into a self-sealing bladder inside the metal
After the pump is filled a hand-held computer is used to program the flow of the pump. I was
started out slow, and had to go back frequently as they did what is cal ed a titration. Fancy
way of saying slowly increase until they find the right dose for you. Titration is made a little
more difficult if anything more than Baclofen is put into the pump, i.e. Morphine, Dilaudid,
I will not allow ANYTHING in my pump except Baclofen. There are virtually no side effects
from ITB Therapy, unless they start adding pain medicine, etc. Each time they increased the
pump I had rubbery legs briefly. But only briefly.
You need to be cautioned that there are risks with the surgery as well as having the pump at
al . The primary thing to remember is that when your pump needs to be filled you MUST get it
filled. You will receive an "alarm date" and schedule your next fill each time you get the pump
filled or adjusted. Keep these appointments, and it is a good idea to have a doctor who
maintains your pump nearby. ER's can not do anything if your pump malfunctions. They are
simply not equipped with the proper tools. All they can really do is give you oral Baclofen,
But withdrawals from ITB CAN BE fatal. Keep in mind that although you may be receiving
only micrograms of Baclofen Intrathecal, that amounts to hundreds of MILLIGRAMS if you
were receiving the same dose orally. Be sure you know the symptoms of Baclofen
It could save your life.
Having said all that scary stuff, please be aware that they have come a long way since these
pumps were first used more than a decade ago, and they are now a regular procedure done
quite frequently. Many people get these pumps for pain medication, etc. The battery life of the pump you receive will have a life of about 5 years. Yes, that does mean another surgery every five years. NOW. WHAT HAS THE PUMP DONE FOR ME?First of al , I can bend my legs, etc. to get in and out of our van. I no longer have nearly daily seizures. That is probably the best part. The seizures would occur without notice, and anywhere, including the bank, while waiting in line! Embarrassing! These seizures, which were originally thought to be "Dystonia Storms" could last up to an hour. They were exhausting and very painful. Would take Ativan and Valium, and, if available, O2, because I would stop breathing from the spasms. These seizures are down to once a month or so, and are a LOT less severe. Usually 1mg Ativan, and breathing into a paper bag for 10 minutes, and it is over. Still exhausting, and painful, but not nearly as bad as they were before the pump. With the pump increased recently, and four 5-day infusions of IVIg I am actual y starting Physical Therapy next week. Very excited because the doctor that maintains my pump suggested it, and said I could be walking, at least some, by the end of the month! After more than two years in a wheelchair, that is thril ing. I would not be at this point without the pump; of that I am certain. Just a point I need to make here. There is risk in nearly everything we do. Whether it is getting in the car to get milk, or having surgery that may help with a horrible disease. But would you like to eat the cereal dry, or would like the milk with it? Maybe a sil y metaphor, but it works for me.
Medtronic ID Card to carry with you always.
You may find thismore informative than anything I wrote here although you will see no reference to Stiff Person Syndrome. My E-Mail:if you have questions.
THIS IS MY EXPERIENCE ONLY
. THERE ARE RISKS, INCLUDING INFECTION, AND
POSSIBLY FATAL SEPSIS.
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