My SCS trial is not exactly what I expected. Imagine having your entire back covered in Saran Wrap, with just enough blood under the plastic to keep it wet and sticky. I cannot wait to have the trial device removed.
Plus the lead migrated to a different spot after less than 24 hours, so it has not been covering the areas I need.
Despite all this, I am pretty sure that I want a permanent SCS. While the lead was in its original position, it really did help.
But I am not looking forward to having that procedure again... probably worse, since they will suture the lead into place. And it will probably be two leads, to get bilateral coverage. I assume that I would be asleep while they place the generator/battery unit in my flank. I want to ask about that tomorrow.
Sunday, February 24, 2013
Wednesday, February 20, 2013
SCS Trial
Today I had a spinal cord stimulator trial device placed. It provides electrical stimulation to my spine, and the hope is that it will block the pain signals.
This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak with the attending spinal headache and had to have a blood patch.
The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.
And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.
Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.
The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.
The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...
I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.
Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.
Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.
I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.
This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak with the attending spinal headache and had to have a blood patch.
The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.
And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.
Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.
The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.
The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...
I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.
Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.
Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.
I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.
1/14/13
Still experiencing frequent MS flare ups. Currently:
·
Right side weakness (mild)
·
Burning pain—legs (above knees), hips, pelvis,
trunk
·
Difficulty sleeping
o Fall
asleep fine at night
o Awaken
5-10 times each night, fall asleep quickly each time
o Daytime
sleepiness, occasionally falling asleep during the day
·
Fatigue
MS Clinic – Dr. Rick at
·
11/9/12
Discontinued study medication (probably Avonex) due to lack of efficacy
·
Continuing in the study with lab work, exams,
MRIs, etc.
·
12/7/12
Began Aubagio 14 mg daily
Sleep Clinic – Dr. Goola at
·
9/22/12 Difficulty
sleeping began at the same time as a flare up
·
9/25/12-11/15/12
Dr. Rick prescribed Ambien CR 12.5 mg, slept 5-6 hours straight
·
11/14/12
First appointment with Dr. Goola
·
11/25/12
Sleep study
o No
apnea
o Identified
disordered sleep architecture – frequent awakenings, high percentage levels 1
and 3, low percentage REM.
·
1/4/13
Appointment, received lab results from 11/17/13
o Anemia
and fatigue dx
o Thyroid
and CBC normal
o Referred
to sleep behavioral health program at Bayview
o Recommended
start taking iron
·
4/26/13
Next appointment
Pain Clinic – Dr. Chris at
·
12/27/12 Recommended
spinal cord stimulator from Medtronics
·
1/8/13
Received psych clearance from Dr. Sally
·
In process of scheduling appointment for trial
of SCS
Oral Surgery – Dr. Ned in
·
12/21/12
Post and crown fell out
·
1/7/13
Recommended implant, sinuses and bone look healthy
·
1/16/13
Appointment for implant
Psychology – Ruth in
·
Continuing to see her every 2-3 weeks for
counseling
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