I started a facebook page for support of those of us with rare headache disorders!
The address is: http://www.facebook.com/RareHeadacheDisordersSupportGroup
I am in the process of writing a book about my experience with all of the pain these headaches cause in every area of life and how now my life is a shadow of what it once was. I would love to tell a lie right here and say everything is fine,but it isn't fine and I am not a liar. I am not good at it! So: My neurostimulator is no longer working at full capacity and I am currently disabled and penniless. I know that if given the chance the DBS would work again and I could get my life back but without insurance and with the way the economy is, no one seems interested in helping me at all. So I thought I would start a support group and at least help some folks on there.
If you are suffering, go to the facebook page and check it out. It is pretty good if I do say so myself and you can find out a lot of info and perhaps be a bit better prepared to see your doctor. I suggest looking at the links on the left of the page and clicking on it to find the various headache diaries you can download and use to help your doctor help you.
Thanks,
Kris
21 September 2011
30 March 2008
DBS surgery, what did they do? What it was like from my perspective...
I originally wrote this for a person who suffers from cluster headaches and wanted to know what it is like to go through the surgery, recovery time, etcetera... (*I am not anything resembling an authority on headaches or surgery -- this post is reflective of my understanding and my experience only.)
First a description of the equipment (from online): "The deep brain stimulation system consists of three components: the implanted pulse generator (IPG), the lead, and the extension. The IPG is a battery-powered neurostimulator encased in a titanium housing, which sends electrical pulses to the brain to interfere with neural activity at the target site. The lead is a coiled wire insulated in polyurethane with four platinum iridium electrodes and is placed in one of three areas of the brain. (In my case it is implanted in the ipsilateral posterior hypothalamus, I don't know the exact coordinates) The lead is connected to the IPG by the extension, an insulated wire that runs from the head, down the side of the neck, behind the ear to the IPG, which is placed subcutaneously below the clavicle... The IPG can be calibrated by a neurologist, nurse or trained technician to optimize symptom suppression and control side effects..."
That's the technical stuff, now, in my words:
Okay, there are a few things about the surgery itself: First, yes, they have to drill a hole into the head to implant the electrodes. It is a small hole and it is covered by a 'burr hole cover' after the lead is in place. It is very secure and sturdy and there is no way it will move or become unattached since it is engineered to not move. I have actually smacked it a couple of times by accident and it was fine. It kind of sticks out a little, so no plans for a Mohawk!
Basically the tip of the lead (with 4 tiny electrodes on it) is implanted in the brain and then the wire goes up out of the skull and is buried under the scalp, passing along the skull to the back of the head where it connects kind of like an extension cord and 'plugs in' to a cord that runs down the back of the head and side of my neck and then it is tunneled over my right shoulder and and sits more or less under the collar bone.
The neurostimulator part, or battery as the neurosurgeon calls it, is held securely in a little pocket under the skin on the outer wall of my chest. The extension-like plug on the back of the head is so that the battery part can be replaced without going back into the brain. The battery should last from three to six years, or so I have been told.
This may bring up a horrific picture to you, but actually, there is no way anyone can tell that I have such a system implanted in my head, or my chest and I don't think about it. I just have to be careful sometimes if I go to hug someone, and I have some pain on the back of my head where the connector is, and the cord. It is from scar tissue I think and it is kind of irritating, I need to get it checked out.
If you have the surgery, just know that you will end up with one half of your head shaved and the other will be shaved in several places so they can put some guides on your scalp for the computer mapping of your brain, which they do through MRI, (so no, they don't just dive in there without a clue.) Temporarily losing one's hair is not a steep price to pay for pain relief... Still, I am exceedingly vain about my hair so it's a good thing I was sedated/asleep when they cranked on the hair clippers -- I would have been outta there so fast... ;-) I have to say that I was a little shocked when the resident took the bandages off the day after surgery and left the room without mentioning what I might see when I looked in the mirror; I was not told my head was going to be half shaved. I really should have realised that for myself, but, oh well! It grew back and I have more hair than I need... (Can you tell I am all about my hair? Lol!) But I digress... (I've always wanted to say that...)
Before the procedure, they screw a metal frame to the forehead and back of the skull and this holds your head still as well as being part of the computer imaging system that guides the surgeon through the brain. (They put a helmet on with plates on it before you go in to MRI and it is all very science fiction.)
During the surgery I was awake part of the time from what I was told, but I only remember the few moments around when they turned on the device. I remember hearing someone ask me if I felt anything and when I said no they discussed moving the lead another millimeter, or something like that, and then when it was turned on again it was like magic because I felt the pain go away immediately and completely. I don't remember anything after that until I was in the recovery room talking with someone.
As far as recovery time, I was in the hospital for three days, including the day of surgery. I was in neurology ICU for the first 24 hours and I remember being so happy that I wasn't in pain, I was talking my head off to anyone who would listen and I didn't care about much else and I don't know what the heck I was saying, but no one said anything about it or told me to shut it, and they were occasionally laughing, so it couldn't have been too bad. (One of the residents was so sweet. She told me I was the 'queen of the ICU' for that night! Nice to be queen of something - my one and only chance!)
The pain from the surgery was not bad at all when it came to my head and neck, the worst part was where the battery was installed. Tender area, that part of the chest. All in all it was not all that bad and I was walking around within hours of getting out of ICU.
When I returned home from the hospital, I had a friend stay with me for three days and she basically told me there were no problems that she noticed. I had a couple of episodes of dizziness and weakness, but that could have been partially because of the medications. Also my memory sucked for a couple of weeks and I reported it, but I don't know if that was from the surgery itself. I was fine within a few weeks and have had no problem with memory since.
I was off all pain medicine within seven days from surgery, and then I went to my followup, driven by a friend, picked up my car and drove myself home from Loyola to Rockford in the pouring rain. (That is a 90 minute drive in good weather) It was 9 days after surgery... Pretty amazing.
I have not had any trouble talking, walking or doing anything having to do with motor skills at all since a few weeks after the surgery. It is amazing to feel so physically unaffected... I work full time, I have no limitations, and I have only noticed a strange effect after going through a certain type of security device at the library. I have a card that takes me through airport security without standing in line, which is cool and fine with me... Who would have thought there would be a perk to having this surgery?
After surgery, I strongly recommend having a caring, involved family, significant other, or support system for at least the first six months after surgery since it is just emotionally necessary. I don't suggest traveling across country like I did (another story for another time,) and I don't suggest making any major decisions. It should be a time to heal and to adjust and you will need to be followed closely by neurology.
Regarding the adjustments to the dbs system, it is kind of cool how it feels when they are adjusting it. I can feel everything they do and I know instantly if the device is on or off. Also, while the settings are being changed, I can feel the pain either retracting back into my brain immediately when the proper setting is reached, or the familiar excruciating, searing pain racing out from the center of my brain when it isn't set right. There seems to be a fine line and I can tell them accurately if the settings work because I know it immediately. This should tell you that without the neurostimulator, the pain returns...
The only side effects during the adjustments are visual, (diplopia, which is double vision), and also I can 'see' the room spinning or moving weirdly because part of the visual nucleus gets irritated, for lack of a better way to put it, and has to stabilize. It is kind of like falling off a tall building, it is totally disorienting and I am terrified of heights, so this is very uncomfortable for me. (If the settings are returned to what I walked in with my vision clears up immediately.) This has taken hours to resolve itself at times. I was told that it shouldn't do that, and even that it couldn't have that effect on me for that long, but I don't care about what anyone tells me since I am on this side of it, I know what I know, and I have been paying close attention to my brain for long enough to know when I am right, even if I can't explain how I know.
The point is that if I had simply believed what I was told, I would not have pushed it to see if my vision would resolve and the whole thing would have been a failure. It would not have worked for pain relief at the settings that were 'comfortable' for me. Thank God I trust myself and thank God that the medical professionals involved listened and were willing to keep trying. I certainly couldn't have done it without them. Optimal results are worth fighting for...
Anyway, it finally worked and I got out of that hospital as soon as I could. Now that the settings are stable, I probably won't have to go through that ever again. This was last July, over 8 months ago and the pain is no longer running my life, which is how it is supposed to be.
Okay, so any questions or comments let me know...
First a description of the equipment (from online): "The deep brain stimulation system consists of three components: the implanted pulse generator (IPG), the lead, and the extension. The IPG is a battery-powered neurostimulator encased in a titanium housing, which sends electrical pulses to the brain to interfere with neural activity at the target site. The lead is a coiled wire insulated in polyurethane with four platinum iridium electrodes and is placed in one of three areas of the brain. (In my case it is implanted in the ipsilateral posterior hypothalamus, I don't know the exact coordinates) The lead is connected to the IPG by the extension, an insulated wire that runs from the head, down the side of the neck, behind the ear to the IPG, which is placed subcutaneously below the clavicle... The IPG can be calibrated by a neurologist, nurse or trained technician to optimize symptom suppression and control side effects..."
That's the technical stuff, now, in my words:
Okay, there are a few things about the surgery itself: First, yes, they have to drill a hole into the head to implant the electrodes. It is a small hole and it is covered by a 'burr hole cover' after the lead is in place. It is very secure and sturdy and there is no way it will move or become unattached since it is engineered to not move. I have actually smacked it a couple of times by accident and it was fine. It kind of sticks out a little, so no plans for a Mohawk!
Basically the tip of the lead (with 4 tiny electrodes on it) is implanted in the brain and then the wire goes up out of the skull and is buried under the scalp, passing along the skull to the back of the head where it connects kind of like an extension cord and 'plugs in' to a cord that runs down the back of the head and side of my neck and then it is tunneled over my right shoulder and and sits more or less under the collar bone.
The neurostimulator part, or battery as the neurosurgeon calls it, is held securely in a little pocket under the skin on the outer wall of my chest. The extension-like plug on the back of the head is so that the battery part can be replaced without going back into the brain. The battery should last from three to six years, or so I have been told.
This may bring up a horrific picture to you, but actually, there is no way anyone can tell that I have such a system implanted in my head, or my chest and I don't think about it. I just have to be careful sometimes if I go to hug someone, and I have some pain on the back of my head where the connector is, and the cord. It is from scar tissue I think and it is kind of irritating, I need to get it checked out.
If you have the surgery, just know that you will end up with one half of your head shaved and the other will be shaved in several places so they can put some guides on your scalp for the computer mapping of your brain, which they do through MRI, (so no, they don't just dive in there without a clue.) Temporarily losing one's hair is not a steep price to pay for pain relief... Still, I am exceedingly vain about my hair so it's a good thing I was sedated/asleep when they cranked on the hair clippers -- I would have been outta there so fast... ;-) I have to say that I was a little shocked when the resident took the bandages off the day after surgery and left the room without mentioning what I might see when I looked in the mirror; I was not told my head was going to be half shaved. I really should have realised that for myself, but, oh well! It grew back and I have more hair than I need... (Can you tell I am all about my hair? Lol!) But I digress... (I've always wanted to say that...)
Before the procedure, they screw a metal frame to the forehead and back of the skull and this holds your head still as well as being part of the computer imaging system that guides the surgeon through the brain. (They put a helmet on with plates on it before you go in to MRI and it is all very science fiction.)
During the surgery I was awake part of the time from what I was told, but I only remember the few moments around when they turned on the device. I remember hearing someone ask me if I felt anything and when I said no they discussed moving the lead another millimeter, or something like that, and then when it was turned on again it was like magic because I felt the pain go away immediately and completely. I don't remember anything after that until I was in the recovery room talking with someone.
As far as recovery time, I was in the hospital for three days, including the day of surgery. I was in neurology ICU for the first 24 hours and I remember being so happy that I wasn't in pain, I was talking my head off to anyone who would listen and I didn't care about much else and I don't know what the heck I was saying, but no one said anything about it or told me to shut it, and they were occasionally laughing, so it couldn't have been too bad. (One of the residents was so sweet. She told me I was the 'queen of the ICU' for that night! Nice to be queen of something - my one and only chance!)
The pain from the surgery was not bad at all when it came to my head and neck, the worst part was where the battery was installed. Tender area, that part of the chest. All in all it was not all that bad and I was walking around within hours of getting out of ICU.
When I returned home from the hospital, I had a friend stay with me for three days and she basically told me there were no problems that she noticed. I had a couple of episodes of dizziness and weakness, but that could have been partially because of the medications. Also my memory sucked for a couple of weeks and I reported it, but I don't know if that was from the surgery itself. I was fine within a few weeks and have had no problem with memory since.
I was off all pain medicine within seven days from surgery, and then I went to my followup, driven by a friend, picked up my car and drove myself home from Loyola to Rockford in the pouring rain. (That is a 90 minute drive in good weather) It was 9 days after surgery... Pretty amazing.
I have not had any trouble talking, walking or doing anything having to do with motor skills at all since a few weeks after the surgery. It is amazing to feel so physically unaffected... I work full time, I have no limitations, and I have only noticed a strange effect after going through a certain type of security device at the library. I have a card that takes me through airport security without standing in line, which is cool and fine with me... Who would have thought there would be a perk to having this surgery?
After surgery, I strongly recommend having a caring, involved family, significant other, or support system for at least the first six months after surgery since it is just emotionally necessary. I don't suggest traveling across country like I did (another story for another time,) and I don't suggest making any major decisions. It should be a time to heal and to adjust and you will need to be followed closely by neurology.
Regarding the adjustments to the dbs system, it is kind of cool how it feels when they are adjusting it. I can feel everything they do and I know instantly if the device is on or off. Also, while the settings are being changed, I can feel the pain either retracting back into my brain immediately when the proper setting is reached, or the familiar excruciating, searing pain racing out from the center of my brain when it isn't set right. There seems to be a fine line and I can tell them accurately if the settings work because I know it immediately. This should tell you that without the neurostimulator, the pain returns...
The only side effects during the adjustments are visual, (diplopia, which is double vision), and also I can 'see' the room spinning or moving weirdly because part of the visual nucleus gets irritated, for lack of a better way to put it, and has to stabilize. It is kind of like falling off a tall building, it is totally disorienting and I am terrified of heights, so this is very uncomfortable for me. (If the settings are returned to what I walked in with my vision clears up immediately.) This has taken hours to resolve itself at times. I was told that it shouldn't do that, and even that it couldn't have that effect on me for that long, but I don't care about what anyone tells me since I am on this side of it, I know what I know, and I have been paying close attention to my brain for long enough to know when I am right, even if I can't explain how I know.
The point is that if I had simply believed what I was told, I would not have pushed it to see if my vision would resolve and the whole thing would have been a failure. It would not have worked for pain relief at the settings that were 'comfortable' for me. Thank God I trust myself and thank God that the medical professionals involved listened and were willing to keep trying. I certainly couldn't have done it without them. Optimal results are worth fighting for...
Anyway, it finally worked and I got out of that hospital as soon as I could. Now that the settings are stable, I probably won't have to go through that ever again. This was last July, over 8 months ago and the pain is no longer running my life, which is how it is supposed to be.
Okay, so any questions or comments let me know...
09 June 2007
DBS surgery for CH/CPH headache
I am writing about Chronic Paroxysmal Hemicrania, the headache disorder I have, and about the surgery that I had last year that stopped the pain. I have spoken to some people who suffer with headaches that are the same or have the same origin or mechanism of action in the brain and these people have requested that I tell them about my experience, so this is my way of doing so for now.
What are these headaches and what is the procedure I had? Regarding the treatment modalities and the targeted headache conditions, Dr Peter Goadsby states, (and I hope he won't mind my quoting him):
"Neurostimulation therapy involves the use of peripheral or central nerve electrical stimulation approaches for the treatment of medically intractable headache. Currently, for peripheral stimulation the main approach is that of occipital nerve stimulation, while for central stimulation deep-brain approaches with the target of the region of the posterior hypothalamic gray matter have been explored. Target conditions include migraine and the trigeminal autonomic cephalalgias: cluster headache, paroxysmal hemicrania and short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing/cranial autonomic features (SUNCT/SUNA), as well as hemicrania continua. The initial results are encouraging and given the very significant disability of medically intractable primary headaches, this is a very promising area for patients and physicians alike."
In my case, I have the 'central stimulation deep brain approach' implant. As for my opinion of what the headaches are, well, they are pure hell and torture to a degree I did not think possible. It hurts so intensely that there were times I thought the pain itself would kill me.
I am one of a few people in the world, to have this implant done for this particular headache condition... My intention is to inform others that are suffering about my experience with DBS, and perhaps to give hope. The neurological community is aware of the aforementioned headaches and they are working on treatment options.
For those of you who do not have this headache condition or the others mentioned by Dr. Goadsby, you cannot know how painful and debilitating it is. If you know someone who suffers from any of the above headaches, please treat them with dignity and understand that while there is actually not anything you can do to ease the pain during an attack, you can try to be okay with that and realize that you can help by giving your emotional support. It is a lonely condition and speaking for myself, what I most wanted and needed during the time I was having attacks was pretty much what anyone would want after being attacked and feeling helpless, vulnerable and invaded.
For me, the most difficult thing about explaining what it was like to have the headaches and why I had the DBS surgery is that, while there are indeed visible signs of the headache, how it looks from the outside is absolutely nothing compared to what it feels like from, literally, the inside. So I will attempt to give you a visual: It looks like some swelling of the face, a runny nose, a swollen, tearing eye, but to me it felt like the right side of my head had been blown off and the back of my head whacked by a two by four several times. Then there is the repeated stabbing through the eye deep into the head. I am talking about a stabbing that is exceedingly violent like overkill, when if it were an actual dull knife or stick stabbing me through the head, my eye, face and brain would have turned to thick, sticky sludge long before the attack was over, with nothing left to mutilate. The problem is that instead of the nerves being obliterated by a slicing and dicing attack, they remained intact to feel everything over and over and over and over again, ad infinitum. Imagine that and imagine these attacks happening over and over anytime during the day and night for years...
(These are attacks - it isn't constant. However, in my case the attacks lasted between two and five minutes with residual pain and tenderness, sometimes involving my right inner ear and my neck, and then the attack would begin again sometimes in as little as a couple of minutes, and at other times I just couldn't tell when an attack started or ended, it all seemed the same. My life slowed to a crawl and then to a stop.)
In an actual knife attack on the body the brain would release chemicals and whatnot that would either lessen the pain or prevent you from feeling it at all until the adrenaline wore off, but with these headache attacks there was nothing like that happening; my brain would just lie there, freaking out, and no medicine helped for very long, if at all, including nerve blocks and strong narcotics like Stadol. Several doctors tried every medicine in their pharmaceutical arsenal, but while there was improvement, there was nothing that truly released me from the pain.
There was difficulty getting help for the acute pain because I tried to cope with it and hid it until it was unbearable, patially because I was told it was stress or emotional - it wasn't. Even my instinct kept me quiet since I sensed that an outburst would make it worse, so trips to the ER when I couldn't bear it anymore had mixed results because apparently a person in intense pain is supposed to be freaking out, but like I said, something in my instincts made me try to stay calm. (I wonder now if that was an animalistic response to feeling so vulnerable, you know, like how you hear about how an animal doesn't show it is hurt and hides.)
Sometimes, albeit rarely, I would find myself on my knees, or lying on the floor losing my mind from pain after long hours at work, or sometimes after doing something as simple as going grocery shopping. But usually I would sit quietly alone, trying not to cry and utterly failing, rocking and holding my head with shaking hands during the worst of the unending attacks. Sometimes the agony was so great that tears would just pour down my face and I would beg God from the depths of my soul to make it stop. Apparently, he heard me...
It was 21 months of this violent pain for me until I had the surgery and on the OR table when they inserted the lead where it was supposed to go, somewhere around the center of my brain, and turned the neurostimulator on I had instant relief... (Yes, I was awake, but I do not remember much about the whole thing except for that moment) I have been asked why I would go through such a risky surgery and my answer is that I felt I did not have any other option. I certainly did not want to die, but I could not deal with the pain and did not know how to go on like that. As I have said, what looks like bravery on the surface, when unmasked, is simply desperation and the undeniable will to live.
Regardless of having the surgery, the isolation had taken its toll and I ended up losing a lot of 'stuff', my job, my home, my car, my possessions, but I also lost my dignity and my trust in people along the way. I was disgusted at how the self-righteous can be so incredibly obtuse, while I also felt humbled and amazed as I witnessed first hand how the actions of compassionate people can dramatically change and actually save a life. So I would have to say that ultimately I have regained my wonder and faith as well as finding strength and courage that I didn't know I had.
I currently am rebuilding my life, becoming involved in many activities I used to only imagine or dream of doing. Losing everything has allowed me to rebuild and redefine who I am and what I do. I am grateful beyond words that technology and compassionate medical professionals were there for me and that they continue to be available.
If you know anyone who has severe headaches or if you suffer from them yourself, or if you are a medical professional reading this, and if you have any questions for me, please ask, I will do what I can to help. jkrischicago@yahoo.com
Thanks for reading,
Ciao,
Kris
What are these headaches and what is the procedure I had? Regarding the treatment modalities and the targeted headache conditions, Dr Peter Goadsby states, (and I hope he won't mind my quoting him):
"Neurostimulation therapy involves the use of peripheral or central nerve electrical stimulation approaches for the treatment of medically intractable headache. Currently, for peripheral stimulation the main approach is that of occipital nerve stimulation, while for central stimulation deep-brain approaches with the target of the region of the posterior hypothalamic gray matter have been explored. Target conditions include migraine and the trigeminal autonomic cephalalgias: cluster headache, paroxysmal hemicrania and short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing/cranial autonomic features (SUNCT/SUNA), as well as hemicrania continua. The initial results are encouraging and given the very significant disability of medically intractable primary headaches, this is a very promising area for patients and physicians alike."
In my case, I have the 'central stimulation deep brain approach' implant. As for my opinion of what the headaches are, well, they are pure hell and torture to a degree I did not think possible. It hurts so intensely that there were times I thought the pain itself would kill me.
I am one of a few people in the world, to have this implant done for this particular headache condition... My intention is to inform others that are suffering about my experience with DBS, and perhaps to give hope. The neurological community is aware of the aforementioned headaches and they are working on treatment options.
For those of you who do not have this headache condition or the others mentioned by Dr. Goadsby, you cannot know how painful and debilitating it is. If you know someone who suffers from any of the above headaches, please treat them with dignity and understand that while there is actually not anything you can do to ease the pain during an attack, you can try to be okay with that and realize that you can help by giving your emotional support. It is a lonely condition and speaking for myself, what I most wanted and needed during the time I was having attacks was pretty much what anyone would want after being attacked and feeling helpless, vulnerable and invaded.
For me, the most difficult thing about explaining what it was like to have the headaches and why I had the DBS surgery is that, while there are indeed visible signs of the headache, how it looks from the outside is absolutely nothing compared to what it feels like from, literally, the inside. So I will attempt to give you a visual: It looks like some swelling of the face, a runny nose, a swollen, tearing eye, but to me it felt like the right side of my head had been blown off and the back of my head whacked by a two by four several times. Then there is the repeated stabbing through the eye deep into the head. I am talking about a stabbing that is exceedingly violent like overkill, when if it were an actual dull knife or stick stabbing me through the head, my eye, face and brain would have turned to thick, sticky sludge long before the attack was over, with nothing left to mutilate. The problem is that instead of the nerves being obliterated by a slicing and dicing attack, they remained intact to feel everything over and over and over and over again, ad infinitum. Imagine that and imagine these attacks happening over and over anytime during the day and night for years...
(These are attacks - it isn't constant. However, in my case the attacks lasted between two and five minutes with residual pain and tenderness, sometimes involving my right inner ear and my neck, and then the attack would begin again sometimes in as little as a couple of minutes, and at other times I just couldn't tell when an attack started or ended, it all seemed the same. My life slowed to a crawl and then to a stop.)
In an actual knife attack on the body the brain would release chemicals and whatnot that would either lessen the pain or prevent you from feeling it at all until the adrenaline wore off, but with these headache attacks there was nothing like that happening; my brain would just lie there, freaking out, and no medicine helped for very long, if at all, including nerve blocks and strong narcotics like Stadol. Several doctors tried every medicine in their pharmaceutical arsenal, but while there was improvement, there was nothing that truly released me from the pain.
There was difficulty getting help for the acute pain because I tried to cope with it and hid it until it was unbearable, patially because I was told it was stress or emotional - it wasn't. Even my instinct kept me quiet since I sensed that an outburst would make it worse, so trips to the ER when I couldn't bear it anymore had mixed results because apparently a person in intense pain is supposed to be freaking out, but like I said, something in my instincts made me try to stay calm. (I wonder now if that was an animalistic response to feeling so vulnerable, you know, like how you hear about how an animal doesn't show it is hurt and hides.)
Sometimes, albeit rarely, I would find myself on my knees, or lying on the floor losing my mind from pain after long hours at work, or sometimes after doing something as simple as going grocery shopping. But usually I would sit quietly alone, trying not to cry and utterly failing, rocking and holding my head with shaking hands during the worst of the unending attacks. Sometimes the agony was so great that tears would just pour down my face and I would beg God from the depths of my soul to make it stop. Apparently, he heard me...
It was 21 months of this violent pain for me until I had the surgery and on the OR table when they inserted the lead where it was supposed to go, somewhere around the center of my brain, and turned the neurostimulator on I had instant relief... (Yes, I was awake, but I do not remember much about the whole thing except for that moment) I have been asked why I would go through such a risky surgery and my answer is that I felt I did not have any other option. I certainly did not want to die, but I could not deal with the pain and did not know how to go on like that. As I have said, what looks like bravery on the surface, when unmasked, is simply desperation and the undeniable will to live.
Regardless of having the surgery, the isolation had taken its toll and I ended up losing a lot of 'stuff', my job, my home, my car, my possessions, but I also lost my dignity and my trust in people along the way. I was disgusted at how the self-righteous can be so incredibly obtuse, while I also felt humbled and amazed as I witnessed first hand how the actions of compassionate people can dramatically change and actually save a life. So I would have to say that ultimately I have regained my wonder and faith as well as finding strength and courage that I didn't know I had.
I currently am rebuilding my life, becoming involved in many activities I used to only imagine or dream of doing. Losing everything has allowed me to rebuild and redefine who I am and what I do. I am grateful beyond words that technology and compassionate medical professionals were there for me and that they continue to be available.
If you know anyone who has severe headaches or if you suffer from them yourself, or if you are a medical professional reading this, and if you have any questions for me, please ask, I will do what I can to help. jkrischicago@yahoo.com
Thanks for reading,
Ciao,
Kris
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