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| Mark Niessner | profile | all galleries >> Galleries >> another_hole_in_my_head | tree view | thumbnails | slideshow |
Some helpful sites
Michael J. Fox Foundation for Parkinson Research
I have had ET (Essential Tremor) from an early age, at least since first grade, and have had to deal with it throughout my life. Some of the issues I have dealt with was attending a school where neatness of hand writing was very important led to a major problem. Try as I might I could not get nice flowing curves and would be punished and made to try again. The harder I tried the worse it would get so I finally decided why try (some say I would get bullheaded or stubborn). This writing issue would continue throughout my school days. Another one of the problems came while in the Navy. While trying to get through electronics training I was unable to properly solder the test board for part of the course. This led to removal from the electronics field and again my bullheadedness led me into more trouble. I also had to give up law enforcement as qualifying with the hand gun became to difficult and in the field the tremor emboldened to many of the hoofties we dealt with. Several of the tasks I currently do are impacted also. I need to use the ergonomic keyboard for two reasons, one is the angle that a normal keyboard requires aggregates my condition and the other is the spacing on the ergonomic keyboard is wider so I get less mis-strikes and double keys. When running heavy equipment, trying to smoothly run the new more responsive controls, becomes quite a challenge and is physically exhausting by the end of a day. Many of my hobbies have been affected also, hunting (tough to shoot straight), fishing (can't tie the flies and lures on), photography (even using tripods, adjusting the camera shakes it to much), flute playing (lack of finger control), and flint knapping (hard to strike moving targets). Even eating and drinking can get to be tough. I read one persons account of not being able to eat peas with a fork, heck I have a hard time with a spoon who would use a darn fork? Buffets and serve yourself parties are particularly hard for me.
But it is not all bad, there are some benefits to this condition. I don't have to keep stirring my hot chocolate, I get a free milk shake every time I pick up a glass of milk, my wife got a zig zag sewing machine when she married me, and how many people do you know are custom made for specialty welding? Look welders can be found almost everywhere but I was custom designed to be the guy that can fill the large gaps when welding.
While I have had to put up with a lot of harassment throughout my life I have also received a lot of support. My family has always been there and from an early age my parents were trying to find answers and solutions to my condition. Recently I went back to school and with the support of the people in the geography department, particularly
Roger Downs,
David DiBiase, Jerry Shue, and Mark Wherley,
and office of disabilities I was able to earn my degree (2003) and a new self respect. So when my wife saw some information about DBS, and my lack of successful drug treatments, I decided to pursue this treatment. Below is an ongoing summary of the process.
Hey All,
I want to write this letter like I need another hole in my head, oh wait I do need another hole so here's the letter.
As you all know (at least I think you all know, if not you will by the end of this note)
I am off to Harrisburg for my first surgery.
I know that there is a misconception that I am having this procedure done to help with my nerve condition, but the truth of the matter is there are two other reasons for having this done. One is I am tired of wondering if I am dangerous! I have heard it said "he would be dangerous if he had a brain" so when I come back I will be able to say without a doubt whether I am dangerous or not. The other reason is I have been told I am a bit of a hot head so we are just having the doctor put a few steam vents up there so I can let of some steam now and again:)
Actually, it is because of a condition that affects my brain. The tremor that I have is caused by a part of the brain, called the thalamus, which is sending out signals to my body which causes the tremor. This is a progressive problem (Katherine Hepburn suffered from it, for those of you who have seen her later movies it is predicted that within several years that is where my condition will be if left untreated), and at this point the signals being sent out have been causing "mini brain seizures", and no that does not mean I have a mini brain that is having seizures just that my brain is having small seizures, I know cause I asked:)We have tried several medications and they did not noticeably improved the condition and many had nasty side affects. Then we started discussing some of the other options which really boiled down to surgery. I was very hesitant to go this route till they told me not only would this help my nerves but it would also take care of my receding hair line . Well as soon as I heard that, I said I HAVE to go through with it.
Boy did I misunderstand what they meant by take care of my receding hairline.
The doctor told me things would go much easier if I had half a brain (boy have I heard that before:), but since I don't things will be more complicated. This first surgery will determine what procedures will follow . Monday they will drill a hole (14mm) in my head and insert a metal wire. By sending signals through this wire they hope to cancel the bad signals my brain sends. If this works then a second wire will be placed about a month later. If the stimulator fails, then the only thing left is the destruction of the bad signal processor ( a process where they burn the defective parts of the brain, known as thalamotomy). This is the treatment Michel J. Fox went through to treat his Parkinson disease. We are hoping the stimulator works because if it does then adjustments can be made as the disease progresses. It also leaves the option, if they find a cure, for the probes to be removed and my condition can be treated, whereas they can not un-destroy what has been burned.
The schedule as it stands now is I go in and have the first surgery on Monday the 23 (at 5:45 am, hope the damn surgeon is awake that early) . Time in the hospital is dependent on how I am doing (1 to several nights). I have my post-op appointment on groundhog day (the doctor says if my implant sees its shadow I will need to rest for another 6 weeks if no shadow , then work is right around the corner:) so I am not supposed to plan on doing anything but resting before that. I will find out then when I can return to work and other normal activities. Then about a month later I get to do it all again.
I will send out an email letting you all know when I arrive home from the hospital. I have heard some talk of flowers, please don't send any to me as I am allergic and I would hate to sneeze and blow my brain out the new hole in my head:) ( I think Sue is hiding all my toys now so I can't misbehave so I will accept any cameras, fly rods, kayaks , bikes and such you may want to contribute to help me recover:) I do appreciate the thought behind the flowers and if you wanted to send your wishes and flowers anyway, Sue would love getting them at work:
Sue Niessner
304 Old Main
University Park, PA 16802
Sue will be spending the first week with me so don't plan on sending them before the 30th. Remember I may be putting up with some pain but she will be putting up with a big pain that is in pain:) Our son Justin is also coming along the first day or so to support his mother and me so thanks to all of you that have offered to come along and stay with her (I did notice nobody offered to sit in for me though) but she won't need the help.
Thanks for all your support and prayers
Mark
PS If I come back and seem to have a Holier Than Thou attitude it is because I will be:)
I have returned home from surgery. Things went well but boy do I have a splitting headache.
The surgery went well and the prognoses is good for the DBS. I know the incision seems larger than expected but the doctor said he had a hard time finding the brain. Actually it is for all the bad jokes I told him while working on me.
Things went well at the docs today. After the first surgery I came to the conclusion the worst part was having the HALO brace put on. I asked Dr. Pahapill if this was common and could we do anything about it. His reply was "stop telling all those stupid jokes and then I will consider using some more local anisthic", I told him OK so the jokes may have to wait till after things are all done:) The staples have been removed and the incision is looking good. My probes did not see their shadow so I will be returning to work Monday the 6 th of February (oops this was not a joke). My second surgery has been scheduled for the 2-22-2006 so I will be out again at that time. Probably for about a month as there is a third surgery scheduled for March 3, 2006.
Well I have run into a few minor problems. I ended up with an infection that seems to be under control after concentrated treatments of antibiotics. I have also learned that the body is an amazingly adaptable unit. We all know that the body grows hair to help protect itself from heat loss and other forces of nature much like a thatched roof on a house. Well I of course decided to take the thatched roof off the rafters and I got an infection. The body being the incredible thing it is decided that if I did not want a thatched roof maybe I would be happier with shingles instead:) Unfortunately my body is as poor a carpenter as I am and it did not put the shingles on the roof so I wish they would just go away. If you have not had chicken pox stay away as I am contagious.
Well today was the big day as far as future plans go. Doc says things look good and surgery will stay on schedule. I think this is good as I want to be done with this as soon as possible, but on the other hand I don't think I really want to go through with the HALO again. I have determined that Doc is not the one responsible for the pain, but the Big Guy upstairs was telling me that I ain't no-where near ready to wear a HALO yet so straighten up or else!!!!!!!!!!!!
Made it through the next step. As the completion of my surgery approaches I am now facing a new dilemma, what to do about my nickname. In the past I have been known as shaky but in the hopes that all is going to work well I must come up with something new, and I have decided on speedy. I know why speedy well when looking at the scar from the first surgery and envisioning what it will look like with the second one healed it reminds me of racing stripes on the hood of a car therefore Speedy. I know that it is sort of like putting racing stripes on a model T but lets all be nice and just go with it.
This time around the halo went much better till removal at which point I sprouted a gusher which had to be stitched shut. I now have a string hanging down my back of my head that looks like the pull string on one of the talking dolls. So please don't pull it as it will make me speak but not anything that folks want to hear. This time around I was much more alert, I think they were trying to save money by using less drugs, so I was aware un they tested the units ability to stop the tremors. The results were very impressive and leads me to believe I should see good results, upwards of 90% reduction in tremor. I am having some problems with my eye swelling shut but I have been told this is normal when your wife smacks you for getting fresh, I mean typical after this surgery. Now that both sides have been explored there are a few things I can say for certain:
No bats in the belfry
I am not an air head (blue eyes don't confirm a person is an air head)
No shit for brains (although the first surgery did heal so fast they think some fertilizer may have been present)
Not a few bricks shy of a load
Have a whole brain not half (therefore I must not be dangerous)
Also I am not a hot head (they monitored if often and my temp is well within the normal range)
No mater what Sue says she can not see what I am thinking (it is well hidden in the dark cave of mine)
Final (I hope) surgery
Things are going somewhat better, but the right arm is still pretty useless.
Why couldn't they all be like the small one behind my ear?
Notice the slight box shape below the stapled area. That is the control unit.
I did get cleaned up today and did an inventory of parts and supplies.
6 incisions totaling 14 inches
50 staples
101 Dalmatians I mean stitches (these are under the staples left to dissolve)
2 electrical probes (not to be used as grounding rods)
2 feet of wire (not high tensile but can be used for emergency repairs to fences)
1 battery pack/dual transmitter
one sore head, stiff neck, and immobile shoulder
Also about 30 extra pounds due to lack of activity.
I am feeling well enough that the sitting around is starting to kill me so I may try for a short walk this afternoon.
Today was my post op check up and I am now staple free:) I was somewhat concerned that the implant was have a side affect that I was not aware of because all day yesterday the girls were asking if I was turned on, thought I was missing something, then I realized they meant they neurostimulator. I also realized that instead of telling folks I went to the doctors today and he turned me on, I should say he turned on the control unit or the neurostimulator. I learned a few more things about the doctor this visit, he had to have been one of those kids that always pulled wings off of flys, harassed the little kittens, tried to get fellow students to hold the spark plug wire while he pulled the starter cord, and tried to get the younger kids to pee on the electric fences! The unit has been turned on and now I have about a month of fine tuning to go through. It was really interesting to go through the first round of adjustments and I have learned several new things about the brain. The first thing I learned is that the part of the brain that senses tingling, like when you whack your funny bone or your hand falls asleep, is right next to the part that controls the tremors. This is how I found 9out about the Doctors tendencies as a child. There are four electrodes on each of the probes they inserted and they try to pick the one that has the most impact on the tremor and the least amount on nearby portions of the brain. So using his neat little control panel the Doctor would select an electrode and send some voltage through it. Then he would ask me how it was (this is where I screwed up), to which I said not bad, so the ***&))*%$#@ would up the voltage and try again till I finally told him it was very uncomfortable so he would back it off a bit and then run through some motor skill tests. After about the third time through this Doc made an adjustment and asked how it felt and being the smart person (notice I said smart not intelligent:) that I am I smiled and said "I am not going to tell you cause every time I do you just increase till it hurts", he just smiled and cranked the knob till it made my body jerk and said there are many ways to tell when it to high. It really was not that bad but it is very similar to getting a jolt from an electric fence.
Now for the big question, Did it Work? Well first I have a test for you to try- hold you hand out straight and bring either you middle finger or ring finger in and try to hold it about half an inch away from your palm. Ok how did you do? Remember I have only started the unit up and there is still fine tuning to do but (be patiaent as the files are large but it is the best I can do with what I have) check this out . Here is another example. More video to come later but WOW I THINK IT HAS WORKED GREAT ALREADY