Dear Joyce,
You were not wrong to hope for miracles or to want no pain. No matter what
everyone said about this surgery not being a cure, to hope you are the
exception, happens with all those experiencing the surgery. The is the first
and major disappointment. Once you accept this then a new hope emerges. I
am sure prior to having the surgery the neurosurgeon along with the
neurologist advised you on what to expect. (You may have forgotten this.)
The usual post-surgery recovery protocol might look like the following:
(1) Some neurosurgeons will give a booster shot of L-dopa right after
surgery
(2) Most will say to start taking your medications within 24 hours after
surgery. There has been a surgical shock, lets not have a medicine shock.
This should be the same drugs and levels as prior to the surgery and usually
no changes are made for three weeks. The drugs may seem to do nothing, but
they are working. Your brain is swollen and it will take from 6 weeks to 12
weeks to heal.. During this time the lesion will expand and contract until
it reaches its final shape. This is also the time when symptoms may return,
go away again, return, ... , each symptom that shows itself sends fear to the
patient -- fear that all the symptoms may return. This is unusual in PD when
the surgery is performed by an experienced neurosurgeon.
(3) Fatigue is common after surgery. Sleep a lot and enjoy it.
(4) Medication changes can be just about anything from increases to
decreases. Since there is still half unchanged medication will be required.
Here are some cases:
(a) Prior to surgery it was easy to experience dyskinesia, so you
medicated just under that mark. After surgery dyskinesia does not happen and
you feel under-medicated. You should be able to increase medications now and
the dyskinesia will not happen.
(b) Prior to surgery you medicated slightly into the dyskinesia
state so as to avoid OFF time. After surgery, you may be able to reduce meds
and not go OFF.
There seems to be agreement on one point. It was easy to know if you had
sufficient medications prior to surgery. You had been doing it for a number
of years. You could feel the drugs coming on. After surgery this is more
difficult. Usually the therapeutic window has widened. It is a little more
difficult knowing if you are ON as you knew it or needing more or less. I
have found that after surgery I needed more meds to start, but the same
otherwise.
Finally, the PD on your right side may seem considerably worse. What has
happened, of course, is the side that was bad is now the good side and the
old good side is now the bad side. The actual symptoms may not have changed,
it happens they are the only symptoms you need to worry about.
Exercise - walking, swimming, light weights - are very important. Sleep well
and watch out for possible weight gain. You are not expending the calories
like before surgery.
Regards,
Alan Bonander
