It is always good to see new epilepsy medications being developed. This article from eMaxHealth describes Eslicarbazepine (ESL).
A new study appearing in the latest issue of Epilepsia shows that a new drug called Eslicarbazepine (ESL) shows promise as a treatment for epilepsy patients whose symptoms remain uncontrolled with existing medications. A once-daily dose was shown to be most effective, offering patients added convenience as current treatments can involve several doses per day.
The trial was conducted across 19 locations in five European countries: Croatia, The Czech Republic, Germany, Lithuania and Poland. Patients with at least four partial-onset seizures per month, in spite of treatment with other medications, were administered Eslicarbazepine doses ranging between 400mg and 1,200mg. The study demonstrates that ESL is well tolerated and effective when used as adjunct therapy for adult patients with partial epilepsy, fully eliminating seizures in 24 percent of tested patients. The occurrence of side effects was also low compared to other current treatment methods.
No age- or gender-related differences were found in the effectiveness of the treatment. "Our study shows that ESL was safe and well tolerated," says Patrício Soares-da-Silva, co-author of the study. "We believe that Eslicarbazepine may have the potential to become an important new central nervous system drug not only for the treatment of epilepsy, but also for patients suffering from bipolar disorder and neuropathic pain."
Tuesday, April 24, 2007
Thursday, April 19, 2007
Recovery from a Seizure
How long does it take to recover from a tonic-clonic (gran mal) seizure?
I believe the time varies by person, but in my case, it has changed with medicines, VNS treatment, and age. I first started having seizures when I was 12, I think that first tonic-clonic seizure was strong enough that I slept the entire day... maybe part of the next one as well. As one typically falls down when having a tonic-clonic seizure, recovery time depends a lot on what you hit and where. Those times when I have banged my head up very badly, it took longer to recover - if only because the physical wounds have to heal. Of course, if you fall hard enough on your head, you can get a concussion and that can increase the recovery time as well.
Further complicating things is the intensity of the seizure. Before I got my VNS, tonic-clonic seizures always caused me to stop breathing for as much as 4 minutes. After about a half-year of VNS treatment, when I have had a tonic-clonic seizure, I don't stop breathing. I think this has reduced my recovery time dramatically. So, I think I would have to put recovery time into 4 different categories:
Pre VNS Tonic-Clonic with head injury:
A few hours just to regain coherent speech & though. Time at hospital or with icepack on bruises. At least a full day of sleep and maybe another couple to rest.
Pre VNS Tonic-Clonic without head injury:
A couple hours to regain coherent speech & thought. A day of sleep.
Post VNS Tonic-Clonic with head injury but no cessation of breathing:
A half hour to regain coherent speech & thought. Time at hospital or with icepack on bruises. Extra sleep needed - at least a few hours of sleep after the seizure.
Post VNS Tonic-Clonic without head injury or cessation of breathing:
A half hour to regain coherent speech & thought. Extra sleep needed - at least a few hours of sleep after the seizure.
Now, as a side-note. A few months ago, I had a tonic-clonic seizure and hit my head, but not too bad as I was sitting at a table and did not have far to fall. I did not stop breathing and was able to stand up after perhaps 20 minutes. I did not feel too bad, but I took a nap for a few hours and then got up and was active for the rest of the day. But, the next morning I had another tonic-clonic seizure - I believe because I did not rest enough after the one from the previous day. So, last week, I had a tonic-clonic seizure and I made sure that I slept much more and rested for the next 2 days.
As a further side note, I will probably have to revise the post after my family reads it and tells me the times are wrong. See, that is the other thing, I remember very little from the days when I have tonic-clonic seizures.
I believe the time varies by person, but in my case, it has changed with medicines, VNS treatment, and age. I first started having seizures when I was 12, I think that first tonic-clonic seizure was strong enough that I slept the entire day... maybe part of the next one as well. As one typically falls down when having a tonic-clonic seizure, recovery time depends a lot on what you hit and where. Those times when I have banged my head up very badly, it took longer to recover - if only because the physical wounds have to heal. Of course, if you fall hard enough on your head, you can get a concussion and that can increase the recovery time as well.
Further complicating things is the intensity of the seizure. Before I got my VNS, tonic-clonic seizures always caused me to stop breathing for as much as 4 minutes. After about a half-year of VNS treatment, when I have had a tonic-clonic seizure, I don't stop breathing. I think this has reduced my recovery time dramatically. So, I think I would have to put recovery time into 4 different categories:
Pre VNS Tonic-Clonic with head injury:
A few hours just to regain coherent speech & though. Time at hospital or with icepack on bruises. At least a full day of sleep and maybe another couple to rest.
Pre VNS Tonic-Clonic without head injury:
A couple hours to regain coherent speech & thought. A day of sleep.
Post VNS Tonic-Clonic with head injury but no cessation of breathing:
A half hour to regain coherent speech & thought. Time at hospital or with icepack on bruises. Extra sleep needed - at least a few hours of sleep after the seizure.
Post VNS Tonic-Clonic without head injury or cessation of breathing:
A half hour to regain coherent speech & thought. Extra sleep needed - at least a few hours of sleep after the seizure.
Now, as a side-note. A few months ago, I had a tonic-clonic seizure and hit my head, but not too bad as I was sitting at a table and did not have far to fall. I did not stop breathing and was able to stand up after perhaps 20 minutes. I did not feel too bad, but I took a nap for a few hours and then got up and was active for the rest of the day. But, the next morning I had another tonic-clonic seizure - I believe because I did not rest enough after the one from the previous day. So, last week, I had a tonic-clonic seizure and I made sure that I slept much more and rested for the next 2 days.
As a further side note, I will probably have to revise the post after my family reads it and tells me the times are wrong. See, that is the other thing, I remember very little from the days when I have tonic-clonic seizures.
Monday, April 16, 2007
Recovered...
After a lot of TLC from my wife and rest, I have finally recovered from the tonic-clonic seizure I had last week. Nothing like a seizure to interrupt the perfectly good streak of blogging I had going from last week. Now I have to try to catch up on all three of my blogs...
Friday, April 13, 2007
Another Tonic Clonic
Scott had another tonic clonic seizure while in bed this morning at 1:00. I was awakened to find him seizing on top of me. Luckily, I was able to get out from under him and grab a magnet to manually active his VNS. He came out of the seizure shortly thereafter. He doesn't appear to have any bumps or bruises from the seizure. However, he did complain of a headache and nausea. He is resting now. I will post more tomorrow to let everyone know how Scott is doing.
Christa
Christa
Thursday, March 29, 2007
Pulsing light silences overactive neurons
This article sent to me in the comments (thx matt) is pretty interesting. MIT engineers have figured out ways to control neurons using light and modified genes. It looks like it has a long way to go before it can help with epilepsy, but I am hopeful! Check it out:
Scientists at the MIT Media Lab have invented a way to reversibly silence brain cells using pulses of yellow light, offering the prospect of controlling the haywire neuron activity that occurs in diseases such as epilepsy and Parkinson's disease.
Conversly, it reminds me of the novel, Snow Crash, by Neil Stephenson. A computer program flashes a pattern of lights into a programer's eyes which causes them to die. Great book - great author - always about 20 years ahead of his time.
Scientists at the MIT Media Lab have invented a way to reversibly silence brain cells using pulses of yellow light, offering the prospect of controlling the haywire neuron activity that occurs in diseases such as epilepsy and Parkinson's disease.
Conversly, it reminds me of the novel, Snow Crash, by Neil Stephenson. A computer program flashes a pattern of lights into a programer's eyes which causes them to die. Great book - great author - always about 20 years ahead of his time.
Wednesday, March 28, 2007
More Blogging...
Yet again I am starting another blog. I like to write about a variety of different issues, but I feel that the best blogs are those that focus on a specific topic. So I plan on continuing to blog about epilepsy here while starting a separate one on philosophy, physics, and religion. Stop by at emeriol.blogspot.com
Tuesday, March 27, 2007
MEG
Wake Forest Baptist Medical Center is getting a MEG device that scans the brain for activity and can map it on an MRI scan. It is pretty complicated, but essentially it makes a map of the brain that can identify the exact location for surgery. Below is the description from WFBMC.
MEG measures the magnetic fields created by electric currents generated by the brain’s neurons without the aid of injected radioisotopes or even attached electrodes. An array of 260 magnetic sensors surrounds the head, allowing induced brain magnetic potentials to be recorded from the entire head. These magnetic signals are then projected onto the patient’s own MRI scan, making it possible to localize a given function to a precise portion of the brain. MEG is used for the presurgical localization of critical brain regions (such as the location of language or motor function) and to help locate the site where epileptic seizures begin.
Nerve cells directly generate the magnetic signals detected by MEG, as opposed to other functional imaging tests such as positron emission tomography (PET), single photon emission tomography (SPECT) and MRI, which record secondary changes in blood flow or glucose utilization from which nerve cell activity must then be inferred. Therefore, MEG measures changes and activity not detectable by these other tests. Unlike electroencephalography (EEG), MEG is unaffected by intervening tissues such as the scalp and skull, so signals from deeper areas of the brain that are not detectable by EEG can be identified with MEG.
By identifying the precise locations within the brain that are responsible for the senses, language and other vital processes, doctors can ensure preservation of these functions by avoiding these important areas during surgery. The non-invasiveness of MEG permits it to be used for repeated follow-up measurements without adverse effects.
MEG measures the magnetic fields created by electric currents generated by the brain’s neurons without the aid of injected radioisotopes or even attached electrodes. An array of 260 magnetic sensors surrounds the head, allowing induced brain magnetic potentials to be recorded from the entire head. These magnetic signals are then projected onto the patient’s own MRI scan, making it possible to localize a given function to a precise portion of the brain. MEG is used for the presurgical localization of critical brain regions (such as the location of language or motor function) and to help locate the site where epileptic seizures begin.
Nerve cells directly generate the magnetic signals detected by MEG, as opposed to other functional imaging tests such as positron emission tomography (PET), single photon emission tomography (SPECT) and MRI, which record secondary changes in blood flow or glucose utilization from which nerve cell activity must then be inferred. Therefore, MEG measures changes and activity not detectable by these other tests. Unlike electroencephalography (EEG), MEG is unaffected by intervening tissues such as the scalp and skull, so signals from deeper areas of the brain that are not detectable by EEG can be identified with MEG.
By identifying the precise locations within the brain that are responsible for the senses, language and other vital processes, doctors can ensure preservation of these functions by avoiding these important areas during surgery. The non-invasiveness of MEG permits it to be used for repeated follow-up measurements without adverse effects.
Thursday, March 15, 2007
National Walk for Epilepsy
On March 31, the Epilepsy Foundation will be hosting the first-ever National Walk for Epilepsy. As many as 5,000 walkers, including Greg Grunberg, star of NBC’s “Heroes,” DJ Hapa, and the “New York Subway Hero,” Wesley Autrey, will convene at the National Mall in Washington, D.C., to celebrate one of the greatest events ever for the epilepsy community. The goal is to help eliminate the stigma associated with epilepsy and raise more than $1 million for research toward a cure. More information is available at www.walkforepilepsy.org.
Wednesday, March 14, 2007
No seizures
Not much to say this week except that I have not had any tonic-clonic seizures in like a month. Always happy about that.
I have been considering starting yet another blog... yes, I know it sounds crazy being that I already have 3 of my own and one upon which I guest-post. But I like to write ... I'll keep you posted. :)
I have been considering starting yet another blog... yes, I know it sounds crazy being that I already have 3 of my own and one upon which I guest-post. But I like to write ... I'll keep you posted. :)
Monday, March 12, 2007
Survivor’s Guide to VNS: Part 10 – Effective Settings
The Goal
The object of the settings is to cause your nerve to send signals to the brain. The electrical energy sent to the nerve from the generator has to be enough to cause the nerve to “fire”. Kind of like a spark plug. One key thing to understand is that not everyone’s nerve NEEDS the same amount of electricity in order to cause it to send a signal. This is why the settings need to be adjusted for each person individually.
Unfortunately, there is no real clear chart that says that indicates what setting each person needs. Fortunately, there are some studies that rule out various settings.
Signal Frequency
Studies have been done that show that stimulation to the Vagus Nerve at frequencies of 10 Hz or less do not cause the nerve to send signals. So, your signal frequency should be around 20 to 30 Hz. I keep mine at 20.
Signal ON Time
The Signal On Time should be set to 30 seconds. Although I have seen a few studies that have set it to shorter On Times, the standard is 30. I would keep it at that.
Signal Off Time
I read about a lady who’s psych dr. set her off time to 3 hours! Because it went off so infrequently, she was completely stunned whenever it went off. Don’t let that happen to you. This setting should be between 5 minutes and 1.1 minutes. In addition, the Signal Off Time should not be less than the Signal On Time. I have mine set to 1.1 minutes off.
Output Current & Pulse Width
The two settings that seem to have the most direct impact on side effects and efficacy are the Output Current (OC) and the Pulse Width (PW). One study I have read shows a direct correlation between the two settings and age.
A typical setting that doctors use will be 500 PW and then increase the OC in .25 mA intervals until it gets to 1 or 1.5 mA… regardless of the person or what side effects it causes. Don’t let them adjust your settings this way! Each person is different and needs different settings.
Start with a 130 PW and .25 OC. This is as low as it goes. If you can’t feel it, bump up the PW or the OC one notch until it gets a bit aggravating. Don’t let them put you on a setting where it physically hurts or it causes you to choke. When you get it adjusted up, the VNS should be annoying, not painful.
Efficacy
Remember that the goal is to get your nerve to activate and send a signal to the brain. Start by slowly increasing your settings. Each time, increase them only to the point where the side effect is annoying, not painful or choking to the point of not breathing during activation. Over time, the annoyance will reduce and hopefully within a few days, you will barely notice it.
It will take a while before you start to get any results… if it works for you. You may even have to wait a whole year. Slowly increase your settings over the first few months. Make note of how many seizures you have. The VNS can cause some people to have more seizures. I found that at a higher pulse width and current, I had more seizures. When I lowered it, I had less.
Greater Efficacy over Time
The VNS has somewhat reduced the number of seizures I have, but has definitely reduced the intensity of my seizures. For example, I had a Tonic-Clonic seizure last month, and for the first time, I did not stop breathing. My recovery time after the seizure was immensely reduced. Instead of days or hours of recovery time, I was able to function after only an hour of rest. Amazing.
The object of the settings is to cause your nerve to send signals to the brain. The electrical energy sent to the nerve from the generator has to be enough to cause the nerve to “fire”. Kind of like a spark plug. One key thing to understand is that not everyone’s nerve NEEDS the same amount of electricity in order to cause it to send a signal. This is why the settings need to be adjusted for each person individually.
Unfortunately, there is no real clear chart that says that indicates what setting each person needs. Fortunately, there are some studies that rule out various settings.
Signal Frequency
Studies have been done that show that stimulation to the Vagus Nerve at frequencies of 10 Hz or less do not cause the nerve to send signals. So, your signal frequency should be around 20 to 30 Hz. I keep mine at 20.
Signal ON Time
The Signal On Time should be set to 30 seconds. Although I have seen a few studies that have set it to shorter On Times, the standard is 30. I would keep it at that.
Signal Off Time
I read about a lady who’s psych dr. set her off time to 3 hours! Because it went off so infrequently, she was completely stunned whenever it went off. Don’t let that happen to you. This setting should be between 5 minutes and 1.1 minutes. In addition, the Signal Off Time should not be less than the Signal On Time. I have mine set to 1.1 minutes off.
Output Current & Pulse Width
The two settings that seem to have the most direct impact on side effects and efficacy are the Output Current (OC) and the Pulse Width (PW). One study I have read shows a direct correlation between the two settings and age.
A typical setting that doctors use will be 500 PW and then increase the OC in .25 mA intervals until it gets to 1 or 1.5 mA… regardless of the person or what side effects it causes. Don’t let them adjust your settings this way! Each person is different and needs different settings.
Start with a 130 PW and .25 OC. This is as low as it goes. If you can’t feel it, bump up the PW or the OC one notch until it gets a bit aggravating. Don’t let them put you on a setting where it physically hurts or it causes you to choke. When you get it adjusted up, the VNS should be annoying, not painful.
Efficacy
Remember that the goal is to get your nerve to activate and send a signal to the brain. Start by slowly increasing your settings. Each time, increase them only to the point where the side effect is annoying, not painful or choking to the point of not breathing during activation. Over time, the annoyance will reduce and hopefully within a few days, you will barely notice it.
It will take a while before you start to get any results… if it works for you. You may even have to wait a whole year. Slowly increase your settings over the first few months. Make note of how many seizures you have. The VNS can cause some people to have more seizures. I found that at a higher pulse width and current, I had more seizures. When I lowered it, I had less.
Greater Efficacy over Time
The VNS has somewhat reduced the number of seizures I have, but has definitely reduced the intensity of my seizures. For example, I had a Tonic-Clonic seizure last month, and for the first time, I did not stop breathing. My recovery time after the seizure was immensely reduced. Instead of days or hours of recovery time, I was able to function after only an hour of rest. Amazing.
Thursday, March 08, 2007
Blogging is Hard Work
I started this blog because I enjoy writing and I felt that I could provide some insight into epilepsy that isn’t found anywhere else. I think that I have achieved my goal, but unfortunately, epilepsy is a very small topic upon which I have posted over 250 entries. It has been over a year now, and keeping the topic fresh and interesting is quite challenging… and at times tedious. Ug. Woe is me!
Well, enough of that. Thanks to anyone who took the time to listen to me whine and moan. I’m sure I will come up with something more interesting tomorrow.
Cheers!
Well, enough of that. Thanks to anyone who took the time to listen to me whine and moan. I’m sure I will come up with something more interesting tomorrow.
Cheers!
Friday, March 02, 2007
Medication Sheets at Epilepsy.Com
Epilepsy.Com has posted a few medication sheets on common AEDs that are more helpful than the stuff handed out by the parmacy or drug companies. I checked out the one for Lamictal (one of the AEDs that I take) and it had some info of which I was unaware.
Epilepsy.Com has a lot of great info and seems to do a better job promoting awareness through their webiste than does the Epilepsy Foundation.
Epilepsy.Com has a lot of great info and seems to do a better job promoting awareness through their webiste than does the Epilepsy Foundation.
Tuesday, February 27, 2007
Guilt by Paula Apodaca
Paula has elequently penned another great post concerning the guilt many of those with epilepsy feel with regards to how their condition affects those around them. I tried to select a favoite part, but the whole post was super awesome. Here are the first two paragraphs to whet your appetite...
Guilt connects deep inside of us at that vague junction between an action taken and an action withheld. A core understanding of E. is the recognition that as persons with it, we cannot control the actions of our seizures with certainty. Epileptics and their families learn how to keep silent about the condition, preferring not to speak too loudly about it because to do so might engender more problems than support. In that silence we quietly learn to devalue ourselves. We learn to be guilty.
There is little social history we can lean on to make us feel more comfortable. We can become fixed on our own relationship to epilepsy and can spend huge amounts of time and energy on it. Rarely have any of us seen ourselves seize, but many of us have experienced the aftermath of a seizure’s power and the residual effect it can have on those around us.
Guilt connects deep inside of us at that vague junction between an action taken and an action withheld. A core understanding of E. is the recognition that as persons with it, we cannot control the actions of our seizures with certainty. Epileptics and their families learn how to keep silent about the condition, preferring not to speak too loudly about it because to do so might engender more problems than support. In that silence we quietly learn to devalue ourselves. We learn to be guilty.
There is little social history we can lean on to make us feel more comfortable. We can become fixed on our own relationship to epilepsy and can spend huge amounts of time and energy on it. Rarely have any of us seen ourselves seize, but many of us have experienced the aftermath of a seizure’s power and the residual effect it can have on those around us.
Monday, February 26, 2007
Heros and Self Loathers
Paula Apodaca wrote an excellent post on her blog E. is for Epilepsy about her personal reflections about famous people affected by seizure disorders. Here is a snippet, but read the whole thing...
For my own part, I can't say I feel better about myself knowing there have been famous or historical persons with E., but I do find reading about them as interesting as their works.
Of the ancients, Julius Caesar and Socrates are presented most frequently. Napoleon Bonaparte is often pointed out, but unfortunately, the only lesson I took away from Napoleon's story was that his E. betrayed him in the end, at Waterloo.
I liked writers with E. much better. Fyodor Dostoevsky filled my adolescent hours with great drama; Edgar Allen Poe, entertained me with horror stories; Count Leo Tolstoy made me cry.
For my own part, I can't say I feel better about myself knowing there have been famous or historical persons with E., but I do find reading about them as interesting as their works.
Of the ancients, Julius Caesar and Socrates are presented most frequently. Napoleon Bonaparte is often pointed out, but unfortunately, the only lesson I took away from Napoleon's story was that his E. betrayed him in the end, at Waterloo.
I liked writers with E. much better. Fyodor Dostoevsky filled my adolescent hours with great drama; Edgar Allen Poe, entertained me with horror stories; Count Leo Tolstoy made me cry.
Wednesday, February 21, 2007
VNS Settings Changed
As I had 2 Tonic-Clonic seizures last weekend, I decided to get my VNS settings adjusted. Dr. Dean suggested reducing the off time from 1.8 to 1.1. She thinks that the more rapid cycle of the VNS will improve the effacacy. Nurse Cindy made the change last night... hopefully this will help.
Tuesday, February 20, 2007
Symptoms of fear of antique furniture
This is absolutely crazy. If you type in a Google search for symptoms of fear of antique furniture, Living With Epilepsy is the first hit. Crazy....
Tuesday, February 13, 2007
Survivor’s Guide to VNS: Part 9 – Device Settings
You need to know about your device settings before your Dr. turns it on. Not all physicians, nurses, or technicians know their device settings well. In fact, you may be their first patient… Or you may be the 10th patient that they have mis-programed in a row… Errors in device settings could be completely accidental… maybe the doctor forgot to bring his reading glasses that day and confused a 0.2 with a 2 and confused a Signal Frequency with a Signal OFF time.
So understand the settings, and make sure that you check them out before they activate or change settings on the device. Take responsibility for your own device settings. It’s your life. It’s your device. It’s in your body.
What are the settings?
The settings you need to be concerned about are: Output Current, Signal Frequency, Pulse Width, Signal ON Time, and Signal OFF Time. Doesn’t make much sense, right? Here is the layman’s description of what each is:
Output Current
This is one measurement of the amount of electrical energy that is sent to your Vagus nerve. It is measured in milli-Amps (mA). If you think of electricity as waves crashing against a beach, this would measure the height of the wave.
Signal Frequency
This measures how many times per second that those waves of energy are sent to the nerve. The frequency is measured in Hertz (Hz). Imagine again those waves crashing against the beach – how many waves per second is the frequency.
Pulse Width
This measures the width of the electrical signal. It is measured in uSec… which is a number hard to comprehend, but it is another indication of how much electrical energy is sent to your nerve. Just imagine the water waves again and think about how much water comes with each wave. This measures the part that you would have to dive through to get to the other side of the wave.
Signal ON Time
How long the pulse generator sends electrical energy to the nerve. Using the water analogy again, the waves might wash against the beach for 30 seconds and then stop for a while.
Signal OFF Time
This is a measure of how long the VNS waits between sending signals again. No electrical energy is sent during this time.
So understand the settings, and make sure that you check them out before they activate or change settings on the device. Take responsibility for your own device settings. It’s your life. It’s your device. It’s in your body.
What are the settings?
The settings you need to be concerned about are: Output Current, Signal Frequency, Pulse Width, Signal ON Time, and Signal OFF Time. Doesn’t make much sense, right? Here is the layman’s description of what each is:
Output Current
This is one measurement of the amount of electrical energy that is sent to your Vagus nerve. It is measured in milli-Amps (mA). If you think of electricity as waves crashing against a beach, this would measure the height of the wave.
Signal Frequency
This measures how many times per second that those waves of energy are sent to the nerve. The frequency is measured in Hertz (Hz). Imagine again those waves crashing against the beach – how many waves per second is the frequency.
Pulse Width
This measures the width of the electrical signal. It is measured in uSec… which is a number hard to comprehend, but it is another indication of how much electrical energy is sent to your nerve. Just imagine the water waves again and think about how much water comes with each wave. This measures the part that you would have to dive through to get to the other side of the wave.
Signal ON Time
How long the pulse generator sends electrical energy to the nerve. Using the water analogy again, the waves might wash against the beach for 30 seconds and then stop for a while.
Signal OFF Time
This is a measure of how long the VNS waits between sending signals again. No electrical energy is sent during this time.
Sunday, February 11, 2007
Good Weekend... Not So Much!
Scott had two gran mal seizures over the weekend. Two in a 20 hour period, one on Saturday afternoon and another this morning. Both came as he was eating here at home. I am grateful that Scott was not injured too badly. Other than a few bruises, no one would ever know that Scott had had a seizure... or two. Scott seemed to recover quite quickly after the seizure on Saturday but less quickly this morning after the second seizure. There does not seem to be a clear pattern as to why these seizures occurred. Scott has been taking his medication regularly and has not missed any doses. Perhaps he is still not able to get the rest his body needs. Dr. Dean has stated before that his seizure activity increases when sleep spindles form during his EEG. Scott has turned in early this evening in hopes of getting a good night's rest. Hopefully, tomorrow will be a seizure free day!
Wednesday, January 31, 2007
Survivor's Guide to VNS: Part 8 - Steri-Strips
When your VNS surgeon stitches up your neck and chest, he or she, may use Steri Stips to keep the wound closed. These actually turned out to be one of the most annyoinging parts of the surgery... There were not any decent instructions on how to remove the stupid things. I did as much research as I could, but never found anything that gave practical advice. So here is my best recomendation for dealing with Steri-strips:
Steri-Strips (Steristrips) are a nifty skin-closure product produced by the innovative 3M company. They have been commonly used to hold incisions together after surgery for many years now. Interestingly enough, there is not a lot of information on the web about the product. Evidently, the manufacturer and doctors assume that everyone knows exactly how to deal with the strips after surgery. Not quite so cut and dry. My surgeon, Dr. Brown, gave me a paper indicating that the strips should come off after about 7 days. That was it.
I went to pull them off after 7 days, but could not get them to pull away from my skin. I called the surgeon, but got useless instructions about them - "they can come off in 7 days". So I went searching on the internet... not much useful there either. So... I'm going to post my best recommendation, based on my experience, on how to deal with removing the strips:
1. Don't try to remove them until the time when your doctor says that you can, (3M recommends 7 - 14 days) and when you can get your wound wet.
2. Moisten the strips with warm water.
3. Pull very gently at the edges. Odds are, that you wont be able to pull very far.
4. Stop, take a scissor and cut off whatever part of the strips that are loose.
5. Wait till next day.
6. Repeat steps 2 through 5 until you have removed the strips entirely.
7. You will probably be left with some of the 3M glue stuff stuck to your skin. If so, you can remove the glue carefully with a cue-tip swab & rubbing alcohol.
8. The skin around the incision was still sore when I was trying to remove the glue, so I took several days to get it all off.
To anyone trying to remove Steri-Strips from their wound, take your time and don't let anyone try to pull them off for you!
When I did this post originally back in 2006, I got a few comments about other peoples experince with the SteriStrips. You can read them here.
Steri-Strips (Steristrips) are a nifty skin-closure product produced by the innovative 3M company. They have been commonly used to hold incisions together after surgery for many years now. Interestingly enough, there is not a lot of information on the web about the product. Evidently, the manufacturer and doctors assume that everyone knows exactly how to deal with the strips after surgery. Not quite so cut and dry. My surgeon, Dr. Brown, gave me a paper indicating that the strips should come off after about 7 days. That was it.
I went to pull them off after 7 days, but could not get them to pull away from my skin. I called the surgeon, but got useless instructions about them - "they can come off in 7 days". So I went searching on the internet... not much useful there either. So... I'm going to post my best recommendation, based on my experience, on how to deal with removing the strips:
1. Don't try to remove them until the time when your doctor says that you can, (3M recommends 7 - 14 days) and when you can get your wound wet.
2. Moisten the strips with warm water.
3. Pull very gently at the edges. Odds are, that you wont be able to pull very far.
4. Stop, take a scissor and cut off whatever part of the strips that are loose.
5. Wait till next day.
6. Repeat steps 2 through 5 until you have removed the strips entirely.
7. You will probably be left with some of the 3M glue stuff stuck to your skin. If so, you can remove the glue carefully with a cue-tip swab & rubbing alcohol.
8. The skin around the incision was still sore when I was trying to remove the glue, so I took several days to get it all off.
To anyone trying to remove Steri-Strips from their wound, take your time and don't let anyone try to pull them off for you!
When I did this post originally back in 2006, I got a few comments about other peoples experince with the SteriStrips. You can read them here.
Monday, January 29, 2007
Survivor’s Guide to VNS: Part 7 – Recovery
Recovering from the surgery depends on your overall health and age. Younger people heal a bit faster than older. People in poor health heal slower than those with good health. And of course, if there are complications with the surgery, that can increase the healing time as well.
Remember that Out-Patient surgery does not mean you are going to be feeling fine the next day. Your need to rest and take it easy. Four a few days you won’t want to turn your head to far – it feels like the wire-lead will be pulling on your neck… which it is, you just won’t be used to the feeling for a little while. Also, the area where the incisions are will be sore.
I had my surgery on a Thursday and planned to take five days to recover before going back to work. By the fifth day, I was feeling ok and thought I would be fine to work, but on day 6, I was feeling week again and decided to stay home. So on Wednesday I went to work. I managed to get through the day, but was exhausted. Although I had been able to get around and do just about everything, I had not been up and about for 11 hours straight… so by the end of the work day I was feeling not so good. I took the next day off and went back on Friday. I made it through O.K., but was still quite tired by the end of the day.
If I had to do it over again, I would leave at least 8 days to recover before going back to work full time. Although the cuts are small, they cut a lot of stuff under the skin and it takes a lot out of your body to heal.
Here are few questions I have seen on the VNS Message Board and elsewhere:
I’m having my VNS surgery on Friday. Will I be able to lead my Bible study class on Sunday?
No! Stay home on Sunday. Say a prayer the night before requesting a speedy recovery with no complications and sleep in on Sunday. Really, you won’t feel like talking for extended periods of time right after your surgery. Nor will you be feeling like going anywhere…especially with those stitches in your neck.
I’m having my VNS surgery on Friday. Will I be able to sing in the church choir on Sunday?
No. Stay home. You need your rest. As for the singing, get in as much as you can before your surgery and before they turn on the VNS. You aren’t going to be singing in the choir for much longer. Once your device is turned on, whenever it activates, your voice is going to be scratchy and you wont be able to sing, much less talk without “breaking up”. If singing is a major part of your life, you probably want to reconsider getting the VNS.
Can I go swimming the week after surgery.
No. You got to keep your incision site dry. The stitches will act like a wick and draw bacteria into the wound. Wait until the wound is healed and stitches are removed.
When can I start shaving my face again?
You can shave all around your face, just don’t get the incision site wet. Also, shaving on the left side of your neck is going to pull against the stitches and hurt for a few days.
How can I avoid having a scar on my chest and neck?
Some people recommend rubbing Vitamin E oil on the incision site – after the stitches or steri-strips have been removed. You can also get some anti-scaring stuff from your drug store as well. It is pretty expensive, but I have seen a few people that have used it and their scars are much less visible than mine… I didn’t use vitamin E or the anti-scaring stuff.
Remember that Out-Patient surgery does not mean you are going to be feeling fine the next day. Your need to rest and take it easy. Four a few days you won’t want to turn your head to far – it feels like the wire-lead will be pulling on your neck… which it is, you just won’t be used to the feeling for a little while. Also, the area where the incisions are will be sore.
I had my surgery on a Thursday and planned to take five days to recover before going back to work. By the fifth day, I was feeling ok and thought I would be fine to work, but on day 6, I was feeling week again and decided to stay home. So on Wednesday I went to work. I managed to get through the day, but was exhausted. Although I had been able to get around and do just about everything, I had not been up and about for 11 hours straight… so by the end of the work day I was feeling not so good. I took the next day off and went back on Friday. I made it through O.K., but was still quite tired by the end of the day.
If I had to do it over again, I would leave at least 8 days to recover before going back to work full time. Although the cuts are small, they cut a lot of stuff under the skin and it takes a lot out of your body to heal.
Here are few questions I have seen on the VNS Message Board and elsewhere:
I’m having my VNS surgery on Friday. Will I be able to lead my Bible study class on Sunday?
No! Stay home on Sunday. Say a prayer the night before requesting a speedy recovery with no complications and sleep in on Sunday. Really, you won’t feel like talking for extended periods of time right after your surgery. Nor will you be feeling like going anywhere…especially with those stitches in your neck.
I’m having my VNS surgery on Friday. Will I be able to sing in the church choir on Sunday?
No. Stay home. You need your rest. As for the singing, get in as much as you can before your surgery and before they turn on the VNS. You aren’t going to be singing in the choir for much longer. Once your device is turned on, whenever it activates, your voice is going to be scratchy and you wont be able to sing, much less talk without “breaking up”. If singing is a major part of your life, you probably want to reconsider getting the VNS.
Can I go swimming the week after surgery.
No. You got to keep your incision site dry. The stitches will act like a wick and draw bacteria into the wound. Wait until the wound is healed and stitches are removed.
When can I start shaving my face again?
You can shave all around your face, just don’t get the incision site wet. Also, shaving on the left side of your neck is going to pull against the stitches and hurt for a few days.
How can I avoid having a scar on my chest and neck?
Some people recommend rubbing Vitamin E oil on the incision site – after the stitches or steri-strips have been removed. You can also get some anti-scaring stuff from your drug store as well. It is pretty expensive, but I have seen a few people that have used it and their scars are much less visible than mine… I didn’t use vitamin E or the anti-scaring stuff.
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