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Hi all,
 
Thanks a lot for the many questions I received about my pallidal stimulation.
 
Included you find an attached file (written in english) about my pallidal
stimulation....
 
Greetings from Belgium...
Geert.
 
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PALLIDAL STIMULATION FOR PARKINSON'S DISEASE
 
 
 
 
 
 
 
 
 
TESTIMONY OF A PATI=CBNT....
 
"TO HELL WITH PARKINSON'S DISEASE"
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
PALLIDAL STIMULATION FOR PARKINSON'S DISEASE=20
 
 
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.:03.644.02.50)
 
 
 
 
 
 
PALLIDAL STIMULATION FOR PARKINSON'S DISEASE
 
 
Prof.Dr.J.CAEMAERT (neurosurgeon Univ.Hosp. Gent), Tel.:.09.240.32.56
Dr.C.VAN DER LINDEN (neurologist Univ.Hosp. Gent),
Tel.: 09.240.45.29
Dirk CACAESTECKER (Medronic-Belgium)
Tel.: 02.460.20.55
 
 
 
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.
 
 
On simple demand a video of  the operation can be obtained by Dr.C.Van der=
 Linden (neurologist at the University Hospital in Gent)
                                    =20
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 2 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 patients=
 (one of 38 years and one of 61 years) who had been treated by this surgical=
 method.
Both patients could reduce their medication 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
 
 
 
 
 
 
 
 
 
 
 
 
 
 
??
 
 
 
=20
 
=20
 
 
 
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