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...
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