Before my Deep Brain Stimulation surgery I would have
benefitted from a personal account of the surgery that covered every detail.
Since I could not find one, I am writing one so that it will help others. I am
writing this after going through the first stage of the process and will post
another article when I have gone through each of the subsequent stages (stage 1
putting in the electrodes in the brain; stage 2 putting in the
neurotransmitters in the chest and connecting the wires from the brain; stage 3
turning on the device and programming it).
STAGE 1
I am a 61 year old female who first noticed Parkinson
symptoms in my late forties and was diagnosed at age 51. My father had
Parkinson’s too. Ten years post diagnosis I had disabling tremor in all four
limbs, micrographia, stiffness, could not turn over in bed, had painful spasms
in right foot and leg, and some cognitive decline. My neurologist suggested
that I was ready for DBS and scheduled me for the patient selection testing
(neuropsychological testing, psychiatric evaluation, day clinic to measure
response to sinemet, MRI, and finally surgeon’s evaluation) which all showed
that I would be a good candidate.
My surgery was for bilateral DBS and was planned to be
executed in two stages: Stage 1 would be implantation of the electrodes in the
brain and Stage 2 (a week after Stage 1) would be implantation of the neurostimulators
in my chest and connecting the wires. To give my brain a chance to have
swelling go down the device was not planned to be turned on for four weeks
after surgery. Following that would be several weeks of tweaking the settings
to optimize that result.
One week prior to my first surgery I went to the hospital
for two hours of pre-surgical testing. First I completed a medical history
questionnaire in which I listed all my medications and dosages, listed all the
surgeries I have had and their dates, my allergies, etc. Then a technician took
my blood pressure and gave me an EKG. Then blood was drawn. Next a nurse from
anesthesiology came to interview me about my past experiences with undergoing
anesthesia and some questions about my family history. She reviewed my medical
history that the hospital had online and asked me several questions to clarify.
And finally a registered nurse came to interview me about what to expect, what
to bring (my CPAP machine for sleep apnea) and what to leave at home
(everything else!) and we reviewed my Health Care Proxy (a legal form in
Massachusetts in which you designate the person who can speak for you if you
are unable to do so). Then she gave me instructions on how to bathe the night
prior and the morning of surgery and gave me a bottle of antibacterial soap
(this is to help reduce the risk of infection). Even though I had listed all
the medications I take, the nurse probed me for more information – I told her I
also took calcium with vitamin D supplement and an Omega 3 fish oil supplement.
She told me to quit taking the fish oil immediately since it acted like aspirin
in causing bleeding not to clot properly and was a danger in surgery. I am glad
she probed!
The day of Stage 1 surgery I arrived at the hospital at 6:00
AM (I was not allowed to take my Parkinson’s meds and I had no food or drink
since dinner the night before) and joined the rest of the “first shift”
patients. A customer service “ambassador” ushered us all to a waiting room
where we waited to be called in to our surgeries. Our family members were
allowed to wait with us and follow us when we were called. I was about the
fifth person to be called (wait time 15 mins) and was taken to a curtained
station where I changed into a hospital gown and socks. Then I was visited by
the anesthesiologist and the surgical nurse. The anesthesiologist explained
that she would give me something to help me relax as well as a light sedative
but it was the surgeon’s call as to how much. I made it clear that my vote was
for strong on both counts. The surgical nurse asked me if I wanted to use the
bathroom and that got me thinking ‘What If I need to urinate during the
procedure? So I asked the nurse and she asked me if I normally had to use the
bathroom often (which I do) so we agreed that I should have a catheter put in..
I was much relieved in hearing that (pardon the pun!). So if you have urinary
frequency issues do not be shy about asking for a catheter.
Then I was put in a wheel chair and rolled down to the
basement for an MRI. Before the MRI I
saw the surgeon and he fitted me with a head stabilizing device which was
screwed into my head (which had been
numbed). It felt like my ears were being squeezed in a vice. Then my head was
shaved by the nurse — the bangs and a
strip from ear to ear and the back two inches. If you have not had an MRI this
is what happens: they slide you head first into a tube in a very tight fit .
You are given a “panic button” to press in case you need to get out fast [some
people are claustrophobic) and ear plugs. The machine makes a terrible racket,
There is no pain at all. The pictures are taken in chunks of anywhere from five
minutes to twenty minutes at a time. I kept my eyes closed and did silent
chanting. Every once in awhile a voice would ask me how I was doing and would
let me know how much longer it would take. After the MRI I was put back in the
wheel chair and wheeled back to the pre-surgical staging area.
My husband was
sent home and it was time for surgery to begin. I was put in a semi-recling postion which was quite comfortable — I had been worried about how uncomfortable it was going to be flat on my back for so many hours but I was fine.
I was surprised by how busy the operating room was. There were at least two surgeons, the anesthesiologist, my neurologist,
another neurologist who was observing, and two surgical nurses. The men left the room and the nurses put in the catheter. Then the men returned and the anesthesiologist asked the surgeon how deeply he wanted me “relaxed’ and he indicated he wanted to go light. I then felt a stinging where the IV
entered my hand and knew that the drugs had started. I went to a happy place
but was fully awake (I fell asleep a bit later). Twice during the five hour
long procedure I felt pain – it felt like someone poured boiling water onto my
brain and lasted only a second or two. But my response was enough to get
immediate attention. I heard someone say “She is feeling pain!” The
anesthesiologist upped the pain meds immediately. The rest of the time I felt
like my head was cement –no sensation at all. I could hear some noises and the
chatter of the people in the room.
From the chatter I could tell what was going well and what
was not – there was a problem with the current from one electrical outlet and
there was a problem with one of the black lead wires which required that they
go back and do more to my right side. They spent a huge amount of time testing
and deciding on what was the best setting. My left side took much less time
because my arm refused to cooperate! It was like a dead tree limb. They had
draped a piece of plastic over my face and every once in awhile one of the surgeons would peak under it and tell me what they were doing. The surgical nurse and the neurosurgeon were discussing some screw up that had the nurse very upset. I was so glad that the surgeon was reassuring her – we don’t need an upset surgical nurse in the OR!
The doctors spent a lot of time manipulating my arm,
wrist, and hand – jerking them up and down, flapping them etc. to see how the
settings affected them in terms of looseness. And the observed my tremor making it come and go as they changed the settings. My neurologist massaged my legs and feet when they would start to cramp and the anesthesiologist occasionally gave my hand a reassuring squeeze. I did my meditation chanting (Om mane padme hung) over and over silently to help keep me calm during the long hours of surgery.
Finally it was over and my neurologist explained to me
what the outcome was (very positive for the right side, unknown for the left
side) and told me I would be taken to the recovery room. They unscrewed the
head stabilizer (and that was the worst part of the whole thing – very uncomfortable
but not really painful). I immediately got a vicious headache which I still
have 36 hours later. In the intensive care recovery room they gave me Percocet which I immediately vomited. Then they tried just Tylenol which I could tolerate but it did little for my headache. My blood pressure was elevated (and whose wouldn’t be after all of that!). So they gave me IV meds for blood pressure but it did not come down for awhile. After several hours it got gown to normal so they transported me to a regular room. I was starving and thirsty but all I could have was clear liquids. I was given a broth which tasted wonderful, green jello and ginger ale. I vomited again when they gave me more Percocet
and I finally told them no more. I’d rather have the bad headache than the
heaving up.
My husband and 26 year old daughter came to visit me in
the recovery room—they looked exhausted. But I had been so eager to see them –
my blood pressure dropped dramatically when they arrived – sometimes the sight
of a loved one can do wonders! My family
had been waiting for hours to see me and were so tired we only chatted briefly
and I sent them home. They came back the next day at about noon and stayed with
me until I was discharged at about 5:00 pm. Before I could be discharged I had
o a) have had a bowel movement, b) be able to walk around without assistance
and c) not throw up. The first night in
the room was busy with nurses coming in and out of my room taking my vital signs and giving me
my Parkinson’s meds. I had several lovely nurses as the shifts changed. They
were always positive and cheerful even when I threw up on the sheets and when
my room mate was uncooperative. I never found out what was wrong with her but
she was not responsive most of the time. My room was next to the hospital’s
helicopter landing pad so I got to watch the night time emergency helicopters action.
I awoke finally at about 4:30 AM For breakfast I got more green jello and broth
and some apple juice. I wanted a salad desperately. I spent the morning dozing
and watching the TV. Finally it was time for lunch and the nurse said I could
have whatever I wanted. I ordered a Greek salad. It was divine. It came with a
nasty orange ice which I tasted and then took a pass on. I was discharged in
the late afternoon. The nurse gave me a packet of information (my discharge papers)
and went over them with me briefly.
When I got home I went to bed pretty much right away and
slept a good eight hours (which is remarkably long for me). On the second day
after surgery I noticed that my forehead was swollen. Later that evening my
eyes felt stingy and itchy. I was just about to go look in the mirror to check
them out when my daughter looked at me in a panic and said “Mom! Your face is
completely swollen!” I looked in the mirror then and was horrified – my eyelids
were so swollen that they were pressing my eyes shut and below my eyes were two
huge bags of fluid that were livid red. My cheeks and even my neck was swollen.
I called the number given to me with my discharge papers and was told that is
sounded like an allergic reaction. As things continued to get worse I called
the surgeon’s office and told them what was happening. She said “This is going to happen? It is perfectly normal. Everyone calls in a panic and says my eyes are swollen shut!!” To be fair, I am sure I was told but forgot in the haze of anesthesia.
I received a call from the case manager from the Insurance Company who was basically gathering data to ensure I had been treated competently while in the hospital. And I received a call from my primary care doctor’s case
manager who wanted me to know that she was available to me if I had any
questions or concerns.
My headache continued and I continued to take Tylenol
(and at night Tylenol with codeine). By Sunday afternoon it was at a manageable
level without taking any pain killers. I had lots of visitors at home and
received lots of flowers. I went out for coffee every day with my husband and
by Sunday was feeling quite like my self.