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At 04:26 9-06-96 -0400, you wrote:
>Im not sure who wrote re this subject but this operation is being done in St
>Vincents hospital in (Darlinghurst?)Sydney Australia.  It involves
>implanting an electrode (powered by a pacemaker battery) implanted in the
>brain. It can be switched off (why?)at will by the user. These operations
>have been successful. I'm sorry that I dont have any more to offer, but
>contact the hospital direct for more info.]
>Regards
>Philip
>__________________________________________________________
>Firstname Lastname                      [log in to unmask]
>Telephone number and any other information you wish to add
>---
>
>Hi,

Included on this E-mail you'll find an attached file.  It's concerning the
pallidal stimulation that I've ondergone on the 26th of januar of this year.

If you have further questions, please send me your remarks.

Greetings from Belgium.

Geert Arien
(38 years old, PD since my 17 th)

E-mail : [log in to unmask]

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TESTIMONY OF A PATI=CBNT....

"TO HELL WITH PARKINSON'S DISEASE"

 PREFACE

This text was written by Geert Ari=EBn, the first (young) Parkinson patient=
 (38 years old), in Belgium who received a pallidal-stimulation. By the=
 operation Geert was delivered from his rigidity, slowness, tremor and=
 involuntary movements. At the same time Geert could reduce his Parkinson=
 medication to the half ... A new life can begin !


"By this way I want to express my profound gratitude to Prof. Dr. Jacques=
 Caemaert, neurosurgeon , Dr.Chris Van der Linden, neurologist and Dirk=
 Caestecker (Medronic-Belgium) for their total dedication and their valuable=
 advices during my stay in the University Hospital in Gent.
At the same time I want to thank all the people of the departments=
 Polyclinic Neurology and Admission Neurosurgery for the love and the=
 friendship that I could experience.

My second message of thanks goes to Jean Clement. Jean is Parkie and helps=
 me by the translation of great parts of this article. Thanks,  Jean.

To all Parkies who are going to walk the same way, I want to say this : We=
 all know the suffering which we have to experience day by day. Parkinson's=
 disease is a sickness that ties us more or less to this earthly life ...=
 But, as is often the case in many things which are concerned with living=
 and suffering, sunshine comes after rain.  Admission to the hospital means=
 a bit of suffering. But I am convinced that this little bit of suffering=
 (rain) is worth while in view of what comes next, namely Sunshine ...=
 Merely this tought keeps you upright during your stay in the hospital ...=
 Be sure of one thing: if we all go together hand-in-hand on the way, we=
 will win the fight against Parkinson's Disease  in the near future...


My war-cry remains meanwhile:

        "TO HELL WITH PARKINSON "


Tuesday, the 6th of February 1996

Geert Ari=EBn
Kapelsesteenweg 135
B-2180  Ekeren
(Tel . : 003236440250)







1. What is Parkinson's Disease ?

Parkinson is a disease which finds its cause in the brain and is sometimes=
 also called shake-paralysis.
It is not known how one gets Parkinson. Parkinson is not hereditary, mortal=
 or infectious.
There are three major symptoms of the disease : shake (tremor) stiffness of=
 the muscles (rigidity),slowness of movements (bradykinesia).
Fatigue is often the result of these manifestations because each movement=
 becomes slower and more difficult. Very often you have to think about the=
 way in which you will perform a movement and sometimes you feel as if you=
 were carrying a block of lead. Besides, due to the tremor, the muscles are=
 permanently active. The shaking gets worse under stress conditions  or when=
 attention is attracted to it.
Most parkinsonians walk with short steps while bending forward. This may be=
 due to the stiffness of the muscles. Many Parkies have problems with their=
 handwriting that is often wriggly. The greatest problem is that at one=
 moment you can do a lot of things and at the next moment none. People in=
 general do not understand this and find you a poseur.


There are still another number of symptoms, although there are as many=
 manifestations as there are patients. Some are very slow, others are hyper=
 mobile. Many patients have a fixed facial expression which gives the=
 impression that they are always angry, infatuated or depressif. There may=
 be complaints about swallowing, constipation, slow piddling, excessive=
 perspiration and excessive saliva.


All these symptoms are caused by the loss of certain cells in the brain,=
 with as consequence an insufficient production of the chemical dopamine.=
 The progression of the disease goes along with the decrease of the dopamine=
 production.
Dopamine is produced in that part of the brain called the substantia nigra=
 (black substance).=20

Dopamine is a link in the chain of neurons:  brain-spiral=
 marrow-nerves-muscles.
The activity of dopamine has an indirect effect on the nerve pathways which=
 go to the spiral marrow and the muscles. If there is only a little=
 activity, then the activity to the spiral marrow will also be disturbed.=
 Neurons and muscles are not in direct contact with each other; they need a=
 (neuro)transmitter substance such as dopamine. In case that there is not=
 enough production of transmitter, other substances, such as acetylcholine,=
 will have the upper hand, causing a disturbance of the balance followed by=
 the appearance of symptoms as in Parkinson's Disease.

Once the loss of cells in the substantia nigra begins, there is no recovery=
 possible. The brain is not becoming "better". However the loss of cells can=
 be slower by one patient then by another.

Treatment with drugs remains symptomatic. Many patients show side effects=
 due to the use of drugs. Others complain that the drugs are ineffective or=
 nearly so.

There has been done some work to find solutions to reduce the breakdown in=
 the brain.
Many years ago operation techniques which brought some relief were already=
 available. As far back as the 1940's stereotactic thalamotomy (tomy means=
 cut trough) was being performed as a treatment for tremor. Stiffness and=
 slow movements were not affected by this operation. Some 25 years ago this=
 operation technique was abandoned in favour of the introduction of the=
 wonderdrug L-DOPA (levodopa). This drug opened indeed new perspectives for=
 many Parkies. Treatment with levodopa relieved all the symptoms of the=
 disease and doctors thought that the disease was cured. Unfortunately, time=
 has revealed that this is not the case. Patients only get good relief of=
 symptoms for five to ten years. Then the patients become extremely=
 sensitive to the drug so that after they take it the patients get abnormal,=
 extra movements called dyskinesias. =20
These dyskinesias can be by themselves disablend. When the activity of the=
 drug wears off, the patients get symptoms of Parkinson's Disease that are=
 worse than if they had taken no medicine at all.


2. History of pallidotomy for Parkinson's disease

Pallidotomy was introduced in 1952 by Dr. Lars Leksell and was successful in=
 relieving many Parkinsonian symptoms in patients. At the same time,many=
 surgeons were performing surgery on the thalamus and for a variety reasons,=
 thalamotomy became widely accepted, replacing pallidotomy as the surgical=
 treatment of choice for Parkinson's Disease. Thalamotomy,which has an=
 excellent  effect on the tremor, was not quite as effective at reducing=
 rigidity. In addition, bradykinesia was often aggravated by the procedure.=
=20

In 1985, Dr.Lauri Laitinen, who had worked with Leksell, re-introduced the=
 pallidotomy, as a treatment for patients who had previously undergone=
 thalamotomy but remained symptomatic. Many of his patients suffered from=
 severe bradykinesia, rigidity, tremor and other unusual involuntary=
 movements.These patients had long standing, severe Parkinson's Disease that=
 had been treated with medications for many years and exhibited what is=
 known as drug-induced dyskinesias. He reported his first pallidotomy series=
 of 38 patients in January of 1992 and found that 80-90% of patients had a=
 long lasting relief of symptoms. This encouraging experience prompted other=
 specialists to re-examine the role of pallidotomy.

Science evolves from day to day. Today we have made so much progress that we=
 can start with pallidal stimulation. Pallidal stimulation is in contrast=
 with pallidotomy a reversible operation. This means that -in the hope that=
 Parkinson's Disease will be cured in the near future- the stimulator and=
 the probe which is on the target in the pallidum can be removed by a rather=
 simple operation.

3. What are the effects of pallidal stimulation ?

It is the aim of pallidal stimulation to reduce or keep under control the=
 Parkinson's symptoms, as there are rigidity (stifness), tremor (shake),=
 bradykinesia (slowness) and dyskinesias (involuntary movements caused by=
 Levodopa). At the same time pallidal stimulation makes it possible to=
 reduce in a large measure the anti-Parkinson medication.


4. Who is a candidate ?

-The method is probably most beneficial for the Parkinson patient who had in=
 the beginning a good response from L-dopa therapy, but who later on=
 developed "ON-OFF" fluctuations
that were difficult to manage with medication. (if you say "I am ON",this=
 means that you feel allright thanks to the Parkinson medication ; being OFF=
 means that your medication is no more active. In such a situation you feel=
 muscles becoming rigid, movements becoming slower and tremor developing).

-It is not a reasonable alternative for patients who can keep their symptoms=
 fairly well under control with the usual anti-Parkinson drugs.
-It is not indicated for patients  who suffer from loss of memory, =
 confusion or lack of orientation.
-Parkies who want to undergo a pallidal stimulation should stay realistic.=
 At its best the operation cannot cure Parkinson's Disease. Even patients=
 with a serious reduction of their symptoms, still need an anti-Parkinson=
 medication.

Now that this new technique is available, we wonder whether  we should=
 indeed wait untill the last moment  to perform the operation !!!=
 Particularly young patients can become useful and may function quasi=
 normally in society...                                            =20

5. Operation  Procedure=20

The patient is under sedation, but a general anesthesia is not needed by=
 this method. This makes feedback possible during the operation so that the=
 chance of complications is reduced.
The new technique, which has become available only in the last=
 years,provides in a local stimulation in the pallidum internum from a=
 device similar to a "pacemaker". A thin wire probe is inserted permanently=
 into the pallidum internum in a stereotactic manipulation similar to that=
 for pallidotomy. The (sophisticated) battery (with a life of 3 to 5 years,=
 dependend of the stimulation frequency) is placed under the skin of the=
 patient's chest. The electrical signals can be switched on and off with a=
 small magnet held close to the device. If the Parkinson symptoms fluctuate=
 in the course of the day, then the stimulus can be adjusted. The battery is=
 replaced through a simple skin incision.
Probes can be implanted on both sides of the brain, and the side effects are=
 far fewer than those caused by pallidotomy. The long-term effects are not=
 yet known. (with thalamic stimulation there are 4 years of experience).=20
The 6 pallidal stimulations performed by Prof.Dr.J.Caemaert (neurosurgeon)=
 and Dr.C.Van der Linden (neurologist) in January 1996 showed the dramatic=
 reductions in tremor, rigidity, bradykinesia and dyskinesias in the=
 patients who had been treated by this surgical method.
All the patients could reduce their medication (some to the half).       =20

6. Is pallidal stimulation dangerous ?

Stereotactic pallidal stimulation is not without certain risks altough major=
 morbidity (post-operative harmful consequences) and mortality (death as=
 consequence of surgery )is less than 1% (available statistics about=
 thalamic stimulation).
One side effect has been a contra-lateral visual field defect. This defect=
 of the visual field, named scotoma, creates a blind spot in the lower=
 visual field. If this occurs on the left side it is generally well=
 tolerated, but on the right side it may disturb reading.=20
The incidence of this side effect and other potential side effects are=
 minimized by intraoperative physiologic testing during the procedure.=
 Stereotactic pallidal stimulation is not painful. The surgical target=
 within the pallidum is defined by a CT and/or MRI scan carried out with a=
 special stereotactic frame (Leksell frame )attached to the head. Once the=
 appropriate target coordinates have been selected on a computer station,=
 the patient is taken back to the operating room for the surgical procedure=
 itself. The headhair is shaved and the surgery is carried out under=
 intravenous sedation. A 3 cm skin incision is made in the scalp after=
 infiltration with local anesthesia. Next a hole of about 1 cm is drilled=
 through the skull (a handbore is less frustating than an electrical one).
A 1.8 mm insulated stimulating electrode is then introduced under impedance=
 monitoring into the postero-ventro-lateral globus pallidus. The target area=
 is stimulated with very small electrical impulses which may give rise to a=
 variety of different reactions. The purpose of the stimulation is to make=
 sure that the probe lies in the correct area of the pallidum. With=
 electrical stimulation, tremor and rigidity can be reduced almost=
 immediately in the operating room and this confirms accurate placement of=
 the electrode tip. Electrical stimulation may also give rise to visual,=
 motor, sensory or other untoward symptoms and this would indicate that the=
 probe may need repositioning. If symptoms occur even after repositioning,=
 there is a risk that the surgery cannot be performed safely and that the=
 test probe  has to be removed  without possibility of placing the=
 definitive electrode. When the intraoperative stimulation indicates that=
 the tip of the test electrode lies in the optimal location, then the=
 neurologist (who knows his patient very well) can begin with a detailed=
 intraoperative testing to insure that no neurologic deficit  will be=
 incurred when placing the definitive electrode. It also will allow for=
 assessment of beneficial effect on tremor (shake), rigidity (stiffnes), and=
 bradykinesia (slow movements). If all of this conditions are met, then a=
 permanent electrode  is inserted at the chosen location. During the=
 insertion of the final electrode, the patient will be given a variety of=
 motor, visual and psychological tests to check that no adverse effects=
 develop.If unexpected reactions are observed further inserting of the=
 definitive electrode is stopped immediately. It  should be noted  that=
 neither the test stimulation, nor the implanting of the definitive=
 electrode are painful. Post-operatively the patient is observed in the=
 recovery room for approximately one hour and then returned to his hospital=
 room. He may eat and drink immediately after the surgery and is often able=
 to leave the hospital in a few weeks. The hypokinesia, rigidity and=
 dyskinesia generally improve immediately. Sometimes the tremor does not=
 disappear immediately but gradually diminishes over several days to=
 weeks.If the surgery is successful without side effects, no special=
 post-operative care or training is required. Stitches can be removed one=
 week after surgery. Headache in the post-operative phase is minimal and can=
 be kept under control.

7. The protocol

The appropriate selection of Parkinson's patients for surgical treatment=
 implies a thorough presurgical evaluation by the operation team=
 (neurosurgeon and neurologist). The protocol includes a detailed history=
 and physical examination as well as videotaping of the patient's=
 preoperative condition. A Uniform Parkinson's Disease Rating Scale is also=
 administered  along with a variety of other rating scales. =
 Neuropsychological testing and neuro-imaging is carried out as needed=
 (MRI,PET scanning). This preoperative evaluation is important to ensure tha=
 the patient is a good candidate for surgical intervention. Many of these=
 scales and tests will be performed post-operatively, to assess the results=
 of surgery in an objective fashion.=20
=20
















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Geert Arien (38 years old)
7 years diagnosed
PD since my 17th.
E-mail : [log in to unmask]
Tel. and fax : 003236440250

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