--=====================_762363309==_ Content-Type: text/plain; charset="us-ascii" 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. --=====================_762363309==_ Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable Content-Disposition: attachment; filename="PALLID~1.TXT" 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 --=====================_762363309==_--