The surgery is 9 days away (DBS - Deep Brain Stimulation). As it gets closer and closer, I get more nervous and more excited at the same time. This morning, for some reason, I feel the nervousness more than the excitement. Sometimes I wonder if I can really do this - I'm just not that brave. But I came across something that I wrote earlier this month, something that I did not intend to share with anyone, because it was more of a venting exercise - I just needed to write without thinking it through too much. But it reminded me of why I'm doing this, and I guess it shows what a bad day with PD is like -
Tonight, I am tired of Parkinson's Disease. Tonight, I am tired of feeling this way. Tonight, I am tired. Sometimes I wish I could just let it all out - just list every single thing that I am feeling and dealing with, without complaining, or whining. Most of the time, I just deal with it - but tonight, I am tired of dealing with it.
I don't even think I could list everything - it's so complicated, and there's so much going on. The medications aren't working right now, and it's been a long day, with a good bit of activity (for me anyway) - so I'm extremely stiff, very sore, there is pain with every movement, and I am so tired that it hurts.
Most of the time, I am aware that I have PD, I have accepted it, it is just a part of my life now - but tonight, it is making it's presence known so strongly, that it is a little scary. I don't want to have PD. I want to feel normal again. I want to be normal again for my kids. I want to be healthy and strong and energetic - and normal.
DBS will not make the disease go away, and it will not make me healthy or normal - but I am hoping that it will push me a good bit back in that direction.
Here is my very limited, very "unmedical", and possibly just plain incorrect, understanding of what will happen next week, but it will be something like this:
Tuesday, August 4th: Admitted to Suburban Hospital, in Bethesda, MD. Probably one of the first orders of business will be physically painless, although it may hurt my pride - they'll shave my head. Then, using local anesthetic, they will put 5 or 6 bone screws in my head. Sounds awful, but it's actually part of the "frameless" technique that Dr. Levine uses - and it's better than the alternative. The old way used a big frame that bolted to your head, and was then bolted to the operating table, and you had to remain completely still during the surgery. I don't completely understand the frameless technique, but somehow these bone screws, along with the scans that are done while the bone screws are in place, orient the head in space - and it is not necessary to be "pinned down" to the table. Once the bone screws are in place, a 3-dimensional MRI and a CAT scan are done. That night, I will stop taking all of my PD meds, so that in the morning, I will not have any of them in my system - for the first time in around 4 years. I don't know how bad I am without any medication - this should be interesting.
Wednesday, August 5th: DBS Lead Placement, the "Big Surgery" - 7:30 am. First, I get to meet everybody - Dr. Levine (the surgeon), the anesthesiologist and an anesthesia team, nurses, and an electrophysiologist (what exactly is an "electrophysiologist" anyway? I don't know, but it sounds impressive!) I will not be put under general anesthesia for this surgery - I will be awake for most of it - but they will use some light sedation for some parts of it. (A nurse friend of ours told us it would most likely be the medicine that Michael Jackson was using - I didn't need to hear that. He went on to explain that it would be used the correct way in the hospital!) From what I understand, it sounds like they will let me sleep through all of the uncomfortable parts - particularly, when they are drilling a hole in my skull - and I appreciate that so very much!
The next step is to find the "target" - the tiny part of the brain where the lead needs to go. They actually listen to the sound of the cells firing in the brain to guide them - different cells make different sounds. Dr. Levine told Kenny and I at our consultation with him, that some cells sound like a bowl of rice krispies - "snap, crackle, pop"; some sound like rain on a tin roof; and some are supposed to sound a certain way, but in PD patients, they sound chaotic. I had no idea, and I am amazed at the complexity and the beauty of the human body - but not surprised. Awesome Creator - awesome creation.
Once the target is found, they will test the stimulation - this could be the incredibly cool part. If it's in the right spot, and if it's going to work at all - it will work when they turn it on. This is why I will not have any medications in my system - they want to see my symptoms full-on, so they can see if the stimulation is going to have any effect. So, I suspect I will be shaking a good bit at this point - probably pretty stiff and sore, as well. They will probably ask me to manipulate the fingers of my right hand, and without medication, that will be slow and sluggish. Then they'll turn it on. It is possible that the tremor will just disappear and my right hand and arm (and perhaps my leg as well, at that point) will become still. It is possible that the resistance in my movements, like trying to move quickly underwater, will be gone, and I will be able to move my right hand and arm freely. It is possible that the stiffness will simply melt away. It is possible. And that's why I'm doing it.
Once the lead is implanted, they'll put me back to sleep, close everything up, take out the bone screws and send me to the recovery room. The next day, they'll do another CAT scan - if everything looks normal (except for the new hardware in my head!) - I'll go home that day, Thursday, August 6th.
But I'll be back on the following Wednesday, August 12th, for the placement of the extension wires and the battery pack, or IPG (Implantable Pulse Generator). This is an outpatient procedure, but they don't need me at all for this - so it's done under general anesthesia. Everything is put under the skin, and the IPG is placed below the collarbone. However, it is not turned on, yet. There is usually some swelling in the brain from the lead implantation, and that needs to go down before everything is turned on and the fine-tuning process begins. So, I'll have to wait a few weeks or so for that. Even then, it is a process, and it may take several months before the right IPG settings in combination with the right medications are found. Programming the IPG is a complicated process, and I've got a lot of learning to do to really understand it - but I know that there are many different factors involved in the programming. The lead in the brain has four tiny electrodes on it - and they can be turned off and on, independently of each other. I may be completely wrong on this, but I believe they're trying to find the one that is in the best position to give the best results. Then, there are three different things that can be adusted - frequency, pulse width, and voltage. I think I remember one of the doctors at the Movement Disorder Clinic where I go saying that there are over 60,000 possible combinations of settings in this tiny little battery-operated neurostimulator. Amazing. But it's going to take time to find the right one for each patient. "Patient" - what an appropriate term for the one being "programmed" - because it's going to take a lot of patience, and determination to stick with it, and not get frustrated and, well...impatient.
I found an article from February, 2004, in Washington Hospital Center's "Physician" magazine about DBS and specifically, about Dr. Levine, who will be performing my DBS surgery. It was a great encouragement. Here are a few quotes:
Outcomes (of DBS surgery) have been excellent, Levine says. Patients are able to reduce the amount of medication needed by 40-50 percent and some no longer need medication. Parkinson's patients experience a 70 percent increase in effective time without symptoms.
"It's one of the most satisfying operations I do," Levine says. "The patient feels the results right away on the table."
"The target is 5 mm in length and you have to hit it in the right axis," Levine explains. "You have to spear it exactly." The exact location depends on the patient and the condition being treated. Levine threads a microelectode into the brain and measures activity to find where there is a precise fit.
"It is a wild experience. You implant the stimulator leads and watch the tremor or rigidity disappear. It blows the patient away."
There are no guarantees - but it is possible, in fact, I would say that is very likely, that this surgery is going to do me a whole lot of good. There are risks, and although they are small, they still must be considered. But the bottom line is this - I am safe in God's hands, and He is in complete control. I cannot quote anything from the Bible that specifically directs me to have this surgery done, of course, but I feel in my heart that this is the path He wants me to take.
Your ears will hear a word behind you, "This is the way, walk in it," whenever you turn to the right or to the left. (Isaiah 30:21)
In fact, at this point, I think the only thing that would keep my from the surgery - is fear. And that is just not an option.
For God has not given us a spirit of fear, but of power and of love and of a sound mind. (2 Timothy 1:7)
The verse that God first put in my heart at the beginning of this journey, is the verse that I will cling to during the days to come -
Do not fear, for I am with you;
Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you,
Surely I will uphold you with My righteous right hand.
(Isaiah 41:10)
It is possible...that better days are ahead.
"...for all things are possible with God." (Mark 10:27b)
"...all things are possible to him who believes." (Mark 9:23b)
I can do all things through Him who strengthens me. (Philippians 4:17)
Monday, July 27, 2009
It is possible...
Labels:
DBS,
Deep Brain Stimulation,
direction,
fear,
Parkinson's Disease,
path,
possible
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment