Dear Kees,
I am in the process of whether or not to have an STN done at Rush MEdical
center in Chicago, by the same Dr.who did Charlie Meyer's surgery.
You mentioned in your story that you had some articles you would share. I
would very much appreciate it if you would send them my way. I am leaning
toward doing it - they did not offer me a Pallidotomy but I want to be sure
this is right for me. I am 59 and have PD 12 years at least - on medication
for 9 years and am having bad dyskenisia and many off times that are getting
worse. I want my life back. I have a new grand baby
coming in August and the way I am now I couldn't even hold her.
Thanks for sharing your story, I hope to share mine as well.
Marty Rose
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-----Original Message-----
From: Kees Paap <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Sunday, June 27, 1999 12:16 PM
Subject: Surgery STN-DBS or Pallodotomy
>
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
