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]
******************************************************************************************