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KEES, A good story for the hole in the head gang. Congratulations and keep up the progress. I'll race you to recovery with my STN stimulators, You are ahead now but I plan to catch up and pass you but only after you get so well you can even forget for a time that you have PD- so we both win:-) . Congrats and best of luck. Charlie Kees Paap wrote: > May 10, 1999 > > Hi listfriends, > > The last few months my PD got worse and I am ready for the surgery. I have > been very over reactive with wild days with very much dyskenesia. Between > those wild periods I went off real bad and sometimes so fast that it seemed > as if a switch was turned. After 10 years of Sinemet the side-effects are > worse than the disease. My right arm sways in all directions and my leg > starts joining the party. It took me several months to get used to the idea > of becoming a member of the "hole in the head club" . That is longer than > the time I needed for the acceptation me having PD at an age of 39. That > took me less than a day. From that moment on I tried to cope as well as > possible. My quality of life has been good till the beginning of this year. > It became worse and finally it got bad enough to go for a surgery. I lost > most of my energy, because I used my energy so fast that I run out of it, > before I even realized that I was using any. > > That is not fun! To have a brain and a body that have conflicting ideas > about what to do with this collection of muscles. Something has to change > radically. Change my muscles? by training them? I tried that and I am in a > very good shape for an almost 50'er. I am strong and tough. I bowled on > April 9 and 10, for 24 hours and wasn't even exhausted. So my muscles are > okay and my brains are the target for a change. > > Faye and I did some searching on the Internet (an understatement) and I had > gathered quite some information about the possible surgeries. We came to > the conclusion that the Sub Thalamus Nuclear Deep Brain Stimulation the > best possible surgery was for me. Of course I discussed this with my local > Neurologist, who came to the same conclusion and recommended Dr. Weiner > from Dallas to do this surgery. So the first step was made. > > The next step was having the surgery paid for by our Insurance. Faye and I > are in the Scott & White health plan (Faye is a general surgeon, working > for Scott & White) . They have in Temple a neuro-surgeon who does the > Stereotactical Procedures. With help from some friends and my neurologist > we wrote a request to have this surgery done in Dallas. We were invited > for a meeting with the Neurologist in temple and just after I left for > Holland, we got the green light. So Faye made an appointment for May 26 and > June 4 was claimed for the surgery. > > I am writing this in the airplane from Amsterdam to Houston. What I am > thinking of this surgery? People have asked me that many times. I rather > NOT think about it. I know that what will happen and I know the risks, but > I am "ready" for it. Faye answers at that same question that she is scared, > but she also knows I am "ready" for it. So we are thinking a lot about it. > We have talked a lot about it and we both know how the surgery is done. I > hope that Faye can be with me in the OR so she can support me and help me > when my English is failing on me because of the tension or other causes. I > would like her to be with me as my wife and not as a surgeon, although she > probably will see it from both sides. She really wants to be there as my > wife and care giver. She knows as no other how I react on things and what > my physical possibilities and shortcomings are. > > I will know Wednesday if I will get the surgery I (we) want. I will keep > you informed about my experiences. If you have any questions or if you want > a copy of one or more of the articles we have collected please let me know. > > May 26, 1999 > > The Wednesday came and we went full optimism to Dallas where we were late > because of roadworks. We learned this afternoon that an appointment doesn't > me am that you will be helped at the time you had an appointment. You will > be helped at the time that you arrived and put your signature. In that > order you will be helped, which can take a long time if people get in > early.. After two hours waiting we were on. When I came in I was very off, > when it was my turn I was very good. But fortunately I got dyskenetic > before I was through. Fortunately I say because I was afraid I was not > going to be treated at all. Dr. Weiner and later on Dr Dessaloms, > independent from each other made the conclusion that I was a > parkinsonpatient who was a very good candidate for a pallodotomy. I didn't > know what I heard, a pallodotomy? For a moment I was knocked out. I felt so > disappointed. A pallodotomy ? me? > > Yes a pallodotomy and well because of the following reasons : > > 1. I am a young patient > 2. I am healthy > 3. I am mentally healthy > 4. I have parkinson on one side > 5. I am not having tremors > 6. I don't have blockades > 7. I have a good respons on sinemet > > So 7 good reasons why I should go for the pallodotomy. I was not quite > sure yet, so we talked a little about the disadvantages. I was always > thinking that I wanted a stimulation because it was reversible. The > Pallodotomy is irreversible, but there are still possibilities for a DBS. > So after some talking I was convinced that this was the best for me. > Certainly after a few details were more explained. The most important one > was the way how they wanted to do it. They have physiologist who makes the > calculations with the help of very fine computer equipment. This method is > called : "Micro electrode recording ". I don't know exactly how it works > but it is a method with sounds, a probe, a computer and a three experts. So > I said YES. > > Tuesday, June 1, 1999 > > Our biggest concern was that I had to go to Temple where they do the > pallodotomy for Scott & White. They have done 9-10 in the past few years > and in Dallas they did 200. Besides that the calculation method is much > better. So it were a few frustrating days. Getting the doctors in Dallas > to send a fax to the Scott & White clinic. On the other hand trying to get > S&W give me permission for having it done on Dallas. Finally, Friday > afternoon we got the fax from dallas, but unfortunately it was a Holiday > the monday after it. But we got permission to go on today !!!!!. So now we > are going trough a lot of thoughts. > > Friday, June 5, 1999 > > I didn't sleep. I stayed awake all night. Faye slept an hour. We left the > house at 3.00 am and arrived a little for 5.00 am in the Presbyterian > Hospital in Dallas. X-rays and bloodtests were already done in Waco. We > went through the process of administration and were at 7.15 ready to place > the "crown" . The "crown" is screwed in the head with 4 screws. This hurts > a little but I was willing to accept a whole lot more pain to get rid of my > symptoms of PD. I was rolled through a few long gangways to the OR. I felt > like a robotman that can think but not move yet. I was at that moment very > off and about the only thing I could move were my eyes, looking through the > bars of the "crown". An MRI was made with the "crown". > > I was so lucky to have the newest operation table which is very > comfortable for the back. I was introduced to everyone in the OR. They > gave me the choice to have a catheter of use a bottle. I have complete > control over my bladder so I went for the bottle. The lamps were warm. > First my head (the crown) was fixed on the special connecter. I was wrapped > in several layers of plastic and sheets and was not supposed to see > anything. I relaxed as good as possible and chatted a little with the head > nurse. Everyone was very nice and friendly. I appreciated that they > explained everything they did. Then the drilling of the hole started. This, > and the breaking of the skull was the worst thing, but by far not that bad > as I anticipated. > > The probe was brought in very carefully. The MER was started and .....it > wouldn't work !! Many options were tried and I made some suggestions from > the table. I started to feel a little worried. At last they decided to > switch off all the electronic devices, amongst them the devices that > checked my function. One by one the devices were connected again and I was > very pleased when final ly all the devices worked a . So the procedure > started. The probe went a little deeper. They kept on trying it and when > they were both (the neurologist and the technician for the MER method) > satisfied. Then they started sending pulses through it, activating the > probe as a stimulator. I started counting 1 - 20 and backwards. Nothing > happened. A little more activity. A slight tinseling in the fingers. Not a > good result. The Probe a little deeper. Counting till my voice start > trembling. A little more. My arm went straight up in a cramp. I could;B > speak!!! A very nasty experience. Of course they saw it very fast, because > they watched me carefully. The probe went all the way out and was injected > under a slight different angle. Amazing results!! I could tap my hand !! > make the birds beck open and close !!!. The probe was replaced by a device > that made the lesions. > Two lesions were made. At a little past noon I was parked in the recover > room. But I was way to good for that. Pretty soon I was he taken to another > room, where I finally could sleep for a while. In the evening the legs > out of the bed. And after a good nights rest I dressed myself and was > walking around a service isle waiting for the scan to be made. I was > planned at 8.00 am, but a few emergencies made it later. At last I was > scanned at 1.00 PM and I could go to house. Dr Weiner had called in the > morning already. > I went home as a new HUMAN being. You can believe me as I tell you that I > cried from happiness. It was such a difference!! > > Sunday, June 7, 1999 > > I feel great. Slept very well and I go to church to thank everyone for > their prayers. I am very well and I am not tired at all. My head is all > short hair and a shaved spot. I have ten "staples" in my head. My private > doctor will remove them. > > Tuesday, June 8 > > I played table tennis last night. I also went to the driving range. Tonight > I go bowling. > > Tuesday, June 15, 1999 > > Tomorrow our trip to New York starts. So today Faye removes the "staples". > The wound is closing very nice. My shaved head grows hair again. The rest > is trimmed again. > > Sunday, June 26, 1999 > > I feel as 7-8 years ago. I am still experimenting with medicines. I can > take less but a not sure how much less. I take 2x Tasmar 200mg (my liver > is perfect), 3-4 times half a tablet 100/25 sinemet regular and 3-4 times > a sinemet 100/25 R. 3-4 times a day 1 mg permax. I have no dyskenesia. I go > off very slow and never so far anymore. I am healthy !!! Well almost. I > hope it stays this way. My toes are cramping sometimes. I still have little > problems, but I am ready for the fight again. For you, I have another 7 > years to go. To fight for your case. In October I will do the bowling > marathon again. I invite you all to Waco to bowl with me. Or organize a > bowling marathon and if you don't have somebody to bowl 24 hours........I > will do it. > > I met a few of the people here yesterday. The meeting with Nina and Joe > Brown was emotional. I am a little afraid that a lot of meetings will be > emotional. But I am ready for it. I had breakfast this morning at seven, > made a walk through a part of Washington and finished this letter. Sorry > for the length and the many errors. Oh, I started this letter with : > > "my mailbox is almost empty, all who sent me mail got answer (I hope so) > and all urgent things have been taken care off" > > I have still a lot of messages to go 3.900 but I will not make it worse by > sending reactions to useless letters, and I promise that I will not send > useless reactions. > > I love you all, > > Kees -- ****************************************************************************************** Charles T. Meyer, M.D. Middleton (Madison), Wisconsin [log in to unmask] ******************************************************************************************