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When I made this web site in August, 1998 I didn’t think about how
useful it might be to other patients. I just used it as a way to record
my experience and share it with my friends and loved ones. In early 1999
the site got indexed on some web search engines, and since then I’ve
received quite a lot of e-mails from people who were going to have the same
surgery. Many questions kept coming up again and again. So here they are,
along with my answers.
I try to be pretty direct in my answers. I don’t like hidden meanings
that could lead to misunderstandings. If you’re a patient, or someone
you love is going to have this surgery, I think you’re better served
by honest, straightforward answers instead of hazy generalizations. So
I tend to just lay it out exactly the way I feel about it. Please feel
free to form your own opinions. Definitely make your own decisions about
your treatment.
I’m not a doctor. I’m not your doctor. This information
is not a substitute for diagnosis, medical advice, or treatment from your
doctor.
- Diagnosis
- Why does my doctor keep telling me it’s just
in my head?
- How is Wolff-Parkinson-White Syndrome diagnosed?
- What can I do to reduce the effects of tachycardia
before I get treatment?
- Before your surgery, could you feel an extra beat
before the onset of tachycardia?
- Were you scared, thinking of your upcoming surgery?
- What are those traces at the top and bottom of each
page?
- Surgery
- Important Question: What did you have to
do to prepare for surgery?
- Why do they ask you to stop taking medication
before surgery?
- I am concerned about being sedated or having
anesthesia. I hate to feel drugged or out of control of my body.
- Why do they insert a catheter through the jugular
vein in the neck?
- Do they really make your heart have tachycardia
during the procedure?
- Can they do two separate procedures—one to identify
the exact abnormal pathway and one to ablate—or must they be done
together?
- Does it hurt when they do the ablation?
- What if they ablate the wrong spot?
- How long does the surgery take?
- And you call that minor surgery?
- Recovery
- What do you think was the worst part of the whole
experience?
- What do you think was the best part of the whole experience?
- Did you have any complications?
- What complications can there be?
- How long did it take you to recover fully?
- How long will it take me
to recover fully?
- Results
- Did you experience a lot of extra beats in the
months after your surgery?
- Do the extra beats mean the surgery didn’t
work?
- Have you had any more episodes of tachycardia
since your surgery?
- Are you glad that you had it done?
- Were there any scars?
- Do you ever worry about the long-term effects
of this procedure?
- Knowing everything you know now, would you have
the surgery?
- Would you do anything differently?
- How does this affect future health insurance?
- About this FAQ
- I have another question that you didn’t answer.
Can you answer it?
Diagnosis
- Why does my
doctor keep telling me it’s just in my head?
- How can I put this? Bluntly. It’s probably because you’re
a woman and your doctor doesn’t take you seriously. I know that
sounds mean, and it is an outrage. I don’t think it’s in your
head.
I noticed a disturbing trend in the e-mails I’ve received
in the first few years after I started this web site. Women were always telling me the same story:
The doctor says it’s all in your head so don’t worry about
it. Several ended up in the emergency room with tachycardia before anyone
believed them. I’ve talked to women at work and they concur that
this treatment of women is a serious and widespread problem in our culture’s
health system. (In Europe, Australia, and in North America.) Sad to
say, our medical culture treats women as overly sensitive children ruled
by their emotions. I don’t know what can be done about it, except
to try to articulate your symptoms accurately.
Lately
things seem to have gotten a little better: Maybe doctors are getting the message and taking women's symptoms as seriously as men's.
Back to the questions.
- How is Wolff-Parkinson-White
Syndrome diagnosed?
- There are several types of tachycardias resulting form accessory pathways;
each depending on where the pathway is. They have all sorts of technical
names, and can sometimes be differentiated through an ordinary EKG.
However, they don’t always show up on an EKG. Mine, for instance,
was present on an EKG ten years ago, but a month before my surgery they
did another EKG and there was no indication—yet I had symptoms.
- The exact cause of a person’s tachycardia is found during the
EPS—electrophysiological study—and then (hopefully) gets obliterated
during the ablation. (Modern EPS/ablation catheters even have a combination
sensor and heater in the tip. When the sensor gets the extra signal,
it’s in the right place to zap the nerve. It’s pretty elegant,
actually.)
- I’m not a doctor. I’m not your doctor. This information
is not a substitute for diagnosis, medical advice, or treatment from
your doctor.
Back to the questions.
- What can I do
to reduce the effects of tachycardia before I get treatment?
- You can’t make the accessory pathways in your heart go away by
themselves, but you can reduce the irritants that can bring on tachycardia
and improve your general state of health:
- Stop drinking coffee, tea, chocolate, or soda pop with caffeine.
(If you can live without soda pop, cut that out, too. Carbonic acid
does funky things to your electrolytes, even without the caffeine.)
- If you smoke, stop smoking. (Did you really need me to tell you
that?)
- If you drink, be reasonable about it.
- Under the advice of a doctor, do cardiovascular exercise to strengthen
your heart for when tachycardia happens. There’s no need to
be a "cardiac cripple."
I followed that advice for twenty years, and it worked for me. Your
case may be different. I’m not a doctor. I’m not your doctor.
This information is not a substitute for diagnosis, medical advice,
or treatment from your doctor.
Back to the questions.
- Before your
surgery, could you feel an extra beat before the onset of tachycardia?
- Sometimes I might get a few extra beats, say, during a hockey game,
as warning that if I went on like that I’d get tachycardia. Other
times I’d just get tachycardia without any warning. My normal resting
pulse was about 70 BPM; during tachycardia it was about 200 to 220 BPM
Sometimes I’d feel an extra beat and then just a very few tachycardia
beats. But every case is different ... your experience may be similar
or different from mine.
Back to the questions.
- Were you scared,
thinking of your upcoming surgery?
- Yes, a little. I had gone through in my mind all of the steps of the
surgery, and intellectually I was okay with all of them, even the needles.
But all of it together was scary, and I had a few sleepless nights.
So I went to the hospital to check out the catheterization lab and ask
questions. They were quite happy to have me visit ahead of time, and
when I got there for the real thing it was much less spooky.
At some hospitals they like to use a urinary catheter, and I was worried
about that. The nurse in charge of the program said that since surgery
is expected to only take three hours, they didn’t need to use one.
If it ended up taking longer, or if I had problems urinating after surgery,
then they would use one.
There was the small but very real possibility that I might die, and
I had to deal with it. On the day before I was to check in to the hospital
I went on a motorcycle ride. I thought about death. I concluded that
I had lived well. If it was my time to die, I’d be basically okay
with it. I’d be unhappy about the dying part, but basically I’d
be okay. Then I knew I was ready. I turned around and went home. It
turns out I didn’t die, but thinking about it ahead of time eased
those worries.
Your reactions will probably be a little different from mine. Prayer,
meditation, contemplation ... all these things will help reduce the
worry.
Back to the questions.
- What are those
traces at the top and bottom of each page?
- The top trace is of my heart during tachycardia in 1988. You can see
the weird shape of the trace and measure the heart rate of ~150 BPM.
The bottom trace is of a more-or-less normal heartbeat at a rate of
~75 BPM.
Back to the questions.
Surgery
- What did you
have to do to prepare for surgery?
- I received a booklet from the cardiologist’s office that explained
the procedure and what I had to do. The booklet said to stop taking
any heart medication or aspirin for a week before surgery. Then
a few days before surgery I had to go to the clinic to get blood drawn
to measure the concentrations of various chemicals in my body, so they’d
know what’s normal for me. The night before surgery I was not allowed
to eat or drink anything past midnight.
Ask your cardiologist what you need to do to prepare for surgery.
Ask whether you should continue or stop taking your heart medication.
Ask about any side effects from discontinuing beta blockers. If you’re
taking aspirin or any other NSAID, ask your doctor about that, too.
Back to the questions.
- Why do they
ask you to stop taking medication before surgery?
- Certain kinds of heart medication interfere with the way the inside
of your heart conducts electricity. That’s how it controls tachycardia.
The problem is that it also interferes with the surgeon’s ability
to map the accessory pathways. This is important: If you are going to
have this surgery and your doctor hasn’t said anything about your
medication, then you should call him up and ask whether you should stop
or continue taking it.
Back to the questions.
- I am concerned
about being sedated or having anesthesia. I hate to feel drugged or
out of control of my body.
- They will use a local anesthetic for your neck and groin where they
insert the ablation catheters. And they will give you a heavy sedative
to help you relax during the procedure. So the fact is you are out of
control ... but the people doing the work are professionals with an
honest desire to help you heal. They’re not going to be mean to
you; they do not enjoy seeing you suffer. So this is something you will
have to come to terms with. Trust them and allow them to care for you.
The best thing to do is to relax, breathe slowly, and let yourself go
into a nice morning nap. Let the drugs to their work. Relax and doze
off.
Back to the questions.
- Why do they
insert a catheter through the jugular vein in the neck?
- There are two major veins that enter the heart, the jugular vein from
your head and the vena cava from the rest of your body. There are certain
places on the inside surface of the heart that can’t be reached
by a catheter inserted through the vena cava. The easiest way to get
to those spots is through the vein in the neck. They don’t always
use the neck vein, though.
Back to the questions.
- Do they really
make your heart have tachycardia during the procedure?
- In a way, yes. They have to send a faster signal into specific places
in your heart to discover the particular spots that cause the problem.
But you will be constantly monitored with an EKG and other sensors,
and the doctors are right there in case something goes wrong.
I know how scary and worrisome tachycardia can be. The awful thing about
worry and nervousness is that it makes you feel all jumpy and unhappy.
But you’ll be under heavy sedation, so just take a nap while the
doctors work. I remember noticing that my heart was beating quickly,
but I really didn’t care.
Back to the questions.
- Can they do
two separate procedures—one to identify the exact abnormal pathway
and one to ablate—or must they be done together?
- They could, but it’s more practical do do it all at once. Finding
the accessory pathways is the hardest part of the job. Once one is found,
it’s a very simple matter to ablate it and to make sure it worked.
There’s no good reason to repeat the expense, discomfort, and risk
of the procedure.
Back to the questions.
- Did it hurt
when they do the ablation?
- No. Your body has no pain receptors inside of internal organs, so
you can’t feel it when they burn away the accessory pathway. Also,
the actual area that they burn away is only a few millimeters across.
Some people said they experienced pain, and according to my chart I
reported feeling heat during one of the ablations. But I don’t
remember any pain, and I don’t remember the heat or saying that.
Back to the questions.
- What if they
ablate the wrong spot?
- It’s not likely that they will. With the current system, the
ablation catheter is the same one as the sensor: when the sensor hears
the signal through the extra pathway, it is at the correct spot to zap.
There is the risk that the spot is near the AV node itself. If that
node is destroyed, you will need a pacemaker. If that happens, they
will put you completely under and perform emergency surgery to implant
a pacemaker. I know that sounds scary, but the risk is there. However,
the doctors have a lot of experience with this sort of surgery and this
event is very unlikely. If this still worries you, please discuss it
with your surgeon ahead of time.
Back to the questions.
- How long does
the surgery take?
- Three hours is the usual, through sometimes it takes several hours
more to find and ablate all the accessory pathways.
Back to the questions.
- And you call
that minor surgery?
- Major surgery would involve rib spreaders, sutures, clamps, stitches,
and a week in intensive care. In comparison, this surgery was a walk
in the park. I had my wisdom teeth out when I was thirty-two years old.
It went well, but I was grumpy and uncomfortable for a week afterward.
My heart surgery went well, too, but I felt much better much sooner
afterwards.
Back to the questions.
Recovery
- What do you
think was the worst part of the whole experience?
- The worst part for me was getting the IV. Ever since I was a kid I
had problems with needles. But they gave me a Valium and a few minutes
later I was fine with it. Since you can’t drink or eat past midnight
before the day of surgery, you’ll be somewhat dehydrated and grumpy.
Let me tell you ... once that IV starts flowing and putting fluids back
in you, you’ll start feeling better.
If you have a problem with needles, then tell your surgeon about it
during the consultation visit. Mine prescribed Valium for me, but I
didn’t take it because of the drug’s bad reputation. A friend
of mine who is a drug and alcohol rehabilitation counselor told me that
if you need them, taking drugs is okay. I wish I had taken his advice.
Back to the questions.
- What do you
think was the best part of the whole experience?
- Having my brother fly up from Denver (I live in San Francisco) to
take me to the hospital and then home again. I welcomed the phone call
I got from one of my friends at work.
Do you like coffee? I love coffee! I’ve missed out on twenty years
of coffee. They served me coffee for breakfast at the hospital. My favorite
thing now is a cup of coffee with a tablespoon of hot chocolate mix
stirred in. Yum!
Back to the questions.
- Did you have
any complications?
- There were no complications in my surgery. However, in the week after
surgery my neck and groin were sore—it felt as though I had run
into a desk. It was uncomfortable, but bearable. I found that gently
stretching my quadriceps helped me a lot.
Your experience may be different. Take your recovery slowly, and pay
attention to what your body is telling you. You’ll know when you’re
ready for activity again. Pay attention to your wounds. If they turn
red or hurt a lot or have any unusual symptoms, call up your doctor!
I’m not a doctor. I’m not your doctor. This information
is not a substitute for diagnosis, medical advice, or treatment from
your doctor.
Back to the questions.
- What complications
can there be?
- The most common is that they don’t find all the accessory pathways
and you still get tachycardia. That happens about once out of twenty
times. In that case, you have to have the surgery again a few months
later. The second surgery is almost always successful.
As with any surgery, there’s the risk of infection. Your doctor
should tell you what symptoms to look for.
There is the risk that the accessory pathway is near the AV node itself.
If that node is destroyed, you will need a pacemaker. If that happens,
they will put you completely under and perform emergency surgery to
implant a pacemaker. I know that sounds scary, but the risk is there.
However, the doctors have a lot of experience with this sort of surgery
and this event is very unlikely.
There is also a slight (less than one out of a thousand) risk of death.
You have to weigh that against the risk of dying from your heart condition
and compare with with all the other risks we face in daily life. I decided
that the very high chance of life without tachycardia was worth the
very, very small risk of dying.
Back to the questions.
- How long did
it take you to recover fully?
- There was a pea-sized lump in my groin at the site of the catheter
wounds and I was sore and achy for about a week. Two weeks later I played
ice hockey. I was 38 years old and in good basic physical health, which
I have no doubt contributed to my speedy recovery. Your experience may
be different.
Back to the questions.
- How long will
it take me to recover fully?
- It all depends on your state of health. If you're in good physical
shape, don't smoke, don't use drugs, eat well and exercise regularly,
then you sould fully recover within a few days. If you're an overweight,
smoking couch-potato with a drinking problem, then your recovery from
this or any other surgery may take weeks. Do something about those health
problems!
Back to the questions.
Results
- Did you experience
a lot of extra beats in the months after your surgery?
- I had extra heartbeats fairly often in the first hours after surgery.
These decreased over a week or two. Now I get them once in a while.
They used to be warning signs that tachycardia was imminent, but I’ve
stopped paying attention to them.
Back to the questions.
- Do the extra
beats mean the surgery didn’t work?
- No. The electrophysiological study seems to irritate the inside of
the heart a little. So the heart has some spasms once in a while for
a few days as it recovers. It doesn’t seem to be a problem for
most people.
Back to the questions.
- Have you had
any more episodes of tachycardia since your surgery?
- None at all. :-) And let me tell you, I tried to induce tachycardia.
I drank coffee and played hockey. If that didn’t induce tachycardia,
nothing will.
Back to the questions.
- Are you glad
that you had it done?
- I’m very glad I had it done! I haven’t had a single episode
of tachycardia since. I play amateur ice hockey; I’m a goalie.
Before surgery, I’d sometimes get tachycardia during a game, usually
when the action was hot and heavy in front of my net. But since surgery,
I have not had to worry.
Back to the questions.
- Were there any
scars?
- As shown in the photos, there were small wounds
at the puncture sites, but these healed completely within a few weeks.
Back to the questions.
- Do you ever
worry about the long-term effects of this procedure?
- The procedure was developed in the 1980s and became widely used in
the 1990s. There’s been enough time for them to prefect it and
get long-term studies of its effectiveness. They have become quite good
at zapping just the part that needs it—ask your surgeon how big
the ablated area tends to be. If you’re in basically good health,
then your heart will not suffer ill effects from the ablation. It would
be like a minor burn. I think that the long-term risks from WPW far
outweigh the risks from the surgery or any long-term side-effects.
Back to the questions.
- Knowing everything
you know now, would you have the surgery?
- Definitely, I’d still have the surgery.
Back to the questions.
- Would you do
anything differently?
- Yes. I’d shave my own groin the night before. There’s something
icky about having a stranger do it for you. (Don’t worry. It will
grow back.) I’d take the Valium my cardiologist prescribed for
me to help me be calm for the IV.
Back to the questions.
- How will this
surgery affect future health insurance?
- I don’t know. My surgery was done through Kaiser Permanente.
They were happy to do a surgery that promised to improve the quality
of my life, extend my life expectancy, and eliminate any need for drug
therapy. Ordinary health insurance companies generally have a six-month
previous-conditions clause, which means that if you received treatment
for anything during the six months before your health insurance begins,
they won’t cover anything related to that problem. Non profit HMOs
like Kaiser are much better about that sort of thing.
Back to the questions.
About this FAQ
- I have another
question that you didn’t answer. Can you answer it?
- Maybe. I’m not a cardiologist, so I can’t answer technical
questions about drugs or surgery or why something didn’t work.
I can’t give any medical advice. Here’s what I recommend:
get yourself a little notebook and carry it around with you for a few
weeks. Every time you think of something about your heart condition
that you’re not sure about, write it down. The next time you visit
your cardiologist, go through the list and ask him all your questions.
He should be happy to answer them ... that’s his job.
If your question isn’t very technical, you can still send
me an e-mail.
Back to the questions.
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