At 05:44 11-01-97 -0500, you wrote:
>Happy '97 everyone. It's been awhile since i posted.
>
>I am on the list at the Kansas Univ. Med Cntr to have the procedure done as
>soon as they receive federal approval to continue. I seem to recall that
>there was a gentleman on the list who had the STIM surgery in Grenobal
>France back in the summer of '94. I remember he lived in Berkley, Ca. I
>would like to reconnect with him and see if we could meet next Wedensday
>(Jan 15) in San San Francisco. I will be seeing my Neurologist at the
>Parkinson's Institute in Sunnyvale, Ca on the 15th.
>
>Thanks
>
>j.r. [log in to unmask]
>
>http://www.west.net/~mythhawk/index.html
>
>Parkinson's E-Journal / Poetry / Thoughts / Science Fiction - Fantasy
>
>"Remember: no matter where you go--there you are"-Buckaroo Bonzi
>
Hi J.R., Hi listmembers,
Last year in january I had this surgery in Belgium. At this moment they have
done 25 PD's all with succes. I include a text on this email that I have
wrote during my stage in the hospital.
Greetings from Belgium,
Geert.
PALLIDAL STIMULATION FOR PARKINSON'S DISEASE
PREFACE
This text was written by Geert Arien, 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 Arien, Kapelsesteenweg 135, B-2180 Ekeren (Tel.:03.644.02.50)
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).
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.
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 (Sweden) 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.
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...
5. Operation Procedure
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).
The 25 pallidal stimulations performed by Prof.Dr.J.Caemaert (neurosurgeon)
and Dr.C.Van der Linden (neurologist) since January 1996 showed the dramatic
reductions in tremor, rigidity, bradykinesia and dyskinesias in patients who
had been treated by this surgical method.
All patients could reduce their medication (Some to the half).
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.
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.
