cristo terminalis tachycardia

[joan mullen]

My 17 year old daughter has been diagnosed with cristo terminalis tachycardia by a electrophysiologist and has been treated with beta blockers and now verapamil without success.  She is currently being referred to a pediatric biofeedback physician as well to see if that will help with her symptoms, i.e. tachycardic episodes, dizziness, shortness of breath, etc.  If that is unsuccessful, the next option is cardiac ablation.  We have been given some statistical numbers on success rates for ablation and would like to verify those with another cardiologist.  Also we were told that she would have a 10% chance of having a permanent cardiac pacemaker placement if the ablation was unsuccessful.  What are the repercussions for the rest of her life if this is an unavoidable occurence?  Her symptoms are very troublesome to her and we want to allow her a chance for a more normal life but the complications sound somewhat threatening as well.  Please give whatever information you can on ablation success rates for her age group as well as the incidence of pacemaker placement and its complications.  Thank you!

[Cleveland Clinic, MD]

Thanks for your question.  I have included some general information about ablation.  Only the doctor doing the procedure can quote you a success rate as there are many factors to consider, including the skill of the doctor and the number of ablations he/she has done.  If you are concerned a second opinion never hurts.  We would be happy to see her here if you would like to come to Cleveland.  Call the number below to make an appointment with one of the electrophysiology doctors.

What is radiofrequency ablation?

A radiofrequency ablation or RFA is a treatment for abnormal heart
rhythms. During RFA, your doctor will use a special machine to direct high
frequency electrical energy to remove areas of the heart muscle that cause
the abnormal rhythms. It can also be used to "disconnect" the electrical
pathway between the upper chambers (atria) and the lower chambers
(ventricles) of the heart. The type of RFA performed depends upon the
type of arrhythmia you have.

What to do before a RFA.
Should I take my medications?

Your doctor may ask you to stop certain medications (such as those that
control your heart rate or aspirin products) one to five days before your
procedure. Ask your doctors which medications you should stop.

Can I eat?

You must have an empty stomach. Do not eat or drink anything after
midnight the night before your procedure. If you must take medications,
drink only small sips of water to help you swallow your pills.

What should I wear?

When you come to the hospital, wear comfortable clothes. It is best not to
wear any jewelry or valuables.


What should I expect during the RFA?

Where does it take place?

Your test will take place in a special room called the EP
(electrophysiology) lab. Before the test begins, a nurse will help you get
ready. The nurse will start an IV (intravenous) line, This is so the doctors
and nurses may give you medications and fluids during the procedure if
necessary.

Will I be awake?

It is common to be nervous. A light sedative will be given to you through
your IV to relax you and make you drowsy. This medication will not put
you to sleep. You will be asked to report any symptoms, answer
questions or follow instructions given to you by your doctor. If you are
uncomfortable or need anything, please let your nurse know.

Will I be monitored?

The nurse will connect you to four monitors:

Defibrillator/Pacemaker:
Attached to one sticky patch placed on the center of your back and
one onto your chest. Allows the doctor and nurse to pace your
heart rate if it is too slow or deliver energy to your heart if the rate is
too fast.

Electrocardiogram or EKG:
Attached to several sticky electrode patches placed onto your
chest, as well as catheters placed inside your heart. Provides a
picture on graph paper of the electrical impulses traveling through
your heart.

Oximeter monitor:
Attached to a small clip on your finger. Checks the oxygen level of
your blood.

Blood pressure monitor:
Connected to a blood pressure cuff on your arm. Checks your
blood pressure intermittently throughout the study.

These monitors allow the doctor to check your heart rhythm and
the body's responses to arrhythmias.


What are catheters?

The catheters used by the electrophysiologist are special wires that can
pace the heart and precisely record its electrical activity.

How does the doctor insert the catheters into my heart?

Your groin area will be shaved and cleansed with an antiseptic solution.
Sterile drapes will be placed to cover you from your neck to your feet. A
light restraint will be placed across your waist and arms to prevent your
hands from coming in contact with the sterile field.

The doctor will numb your groin by injecting a medication. You may feel
an initial burning sensation, then it will become numb.

The doctor will then insert several catheters into the large blood vessel(s)
in your groin. The doctor will use the fluoroscopy machine to guide the
catheters into your heart. It is important that you remain still and resist the
temptation to raise your head to see what the doctor is doing while the
doctor places the catheters are being placed.

Sometimes, it may be necessary to use both an artery and a vein.

What will I feel?

After the catheters are in place, the doctor will look at the monitor to
assess your heart's conduction system. Then, the doctor will use an
external pacemaker to give the heart electrical impulses to increase your
heart rate. You may feel your heart beating faster or stronger when your
heart is paced. If an abnormal heart rhythm occurs, the nurse will ask you
how you are feeling. It is very Important to tell the doctor or nurse the
symptoms you feel.

The doctor will then move the catheters around your heart to see which
area(s) your arrhythmia is coming from. Once the doctor finds the area of
your heart that causes the arrhythmia, energy is applied through the
catheter. You may feel some discomfort or a burning sensation in your
chest. This is normal. During this time you must stay quiet, keep very still,
and avoid taking deep breaths. If you are extremely uncomfortable, tell
your nurse or doctor and more medication may be given.

How long does on RFA last?

About 2 to 6 hours.

Are there any risks to an RFA?

Radiofrequency ablation is generally very safe. However, as with any
invasive procedure, there are risks to having an RFA. Special precautions
are taken to decrease the risks. Your doctor will discuss these risks with
you. Any specific questions should be directed to your doctor.


What should I expect after the RFA?

When will I find out the results?

Results of the procedure will be given to you and your family after the test.
Your doctor will also discuss when you can resume activities.

If you have any other questions, please ask your doctor or nurse.

Will I have to stay in the hospital after RFA?

After RFA you will be admitted to the hospital. You will be taken to your
room and placed on a special monitors called telemetry. Telemetry
consists of a small box connected by wires to your chest with sticky
electrode patches, The box causes your heart rhythm to be displayed on
several monitors on the nursing unit. The nurses will be able to observe
your heart rate and rhythm.

You will be discharged the next day and given follow-up instructions.

Many individuals feel extra heartbeats on and off for a few weeks.
Sometimes you may also feel as if your tachycardia (fast heart rate) is
starting, but then it stops. These sensations are normal and you should not
be alarmed. If however, your tachycardia reoccurs, notify your doctor.

How do I care for the wound site?

After the RFA, the doctor will remove the catheters from your groin. To
prevent bleeding, the doctor will apply pressure to your groin area for
several minutes. Then, you will need to be at bedrest for one to six hours.
Keep your legs as still as possible during this time to prevent bleeding.

No stitches are needed. Your incision will have a small sterile dressing on
it which can be removed the next day. Keep the area clean and dry.
Report any redness, swelling, or drainage at the groin site to your doctor
or nurse.

[Carrie]

What is cristos terminalis tachycardia?  I have real alot about different tachy as I have Paroxysmal Atrial Tachycardia, but never heard of this type? C.

[p]

Hello,

I feel your pain.  I am a 19-year-old male from California.  I started to get rapid-heartbeats from the age-of-13.  I usually get my rapid-heartbeats from playing basketball or running a mile or from a fight.

I went through many different tests and you know what?  They can't make a real Diagnosis.  They know that I have a problem in my electric system.  Now the electrophysioligist wants me to go through an EP Study and the Ablation.

I know that there is 1 chance in 1000 that I can die.
I also know that there is 2 chances in 400 that I can end up with a permanent pacemaker.

I would rather die than to wear a pacemaker.  In my world only the strong survive!  I know you do understand my pain as I know exactly how you and your family's under a lot of stress.  I want to know the same thing as you.


Will we be able to do normal things if the ablation goes through successfully? (Lift-weights--benching, running, basketball, karate, work, and etc..)

Also my condition is not too bad.  But if I don't go through with this Ablation I am afraid that I might end up with some other heart problem--like enlargened heart from breathing deeply.

Mrs. Mullin where are you at?  

What State?

what is your email?

Regards:P

[pazifij]

That's scary - you'd rather die than have a pacemaker!  I have had my defibrillator/pacemaker combo since February 1998 and am grateful to have it.  I did "die" - luckily the EMTs were able to bring me back through CPR and an external defibrillator.  I was 44 at the time - obviously nowhere close to being a teenager, but still relatively young.  A pacemaker is a godsend.  If you need one, I hope you will reconsider.

[Hi]

The arrhythmia called "crista terminalis" is just a rapid atrial heart rate that comes from an area in the upper right atrium called the "crista terminalis".  This area is where the sinus node "lives".  It is from, what I understand, a not to common arrhythmia, but one that may be harder to treat with ablation because of how close it is to the sinus node.  It may be harder to ablate the rapid rate in this area without hitting the whole sinus node.  At least this is what I was told.  

I also do not think a pacemaker is such a bad thing if you have the right EP doctor doing the procedure and you speak to others before hand and make sure you get alot of information and do your homework.  It is something that you must live with the rest of your life.  If your daughter is concerned, she and you really need to talk to a great EP doctor and even get a second opinion before going ahead with it.  They can really help if they are done right.   I bet the doctors here will be able to help you with some names of really great EP doctors at the Cleveland Clinic.  I know they have some of the best in EP doctors.
Good luck.

[Dina]

I am now 36 years old with ventricular tachycardia and have had a defibrillator implanted into my stomach (so it would not show) for two years now.  It took about 6 months to get use to the idea of having it there and worrying about it going off, but now I'm glad I have it.  If I were to go into an arrhythmia and not have anyone around to help I would most likely die without the defibrillator.

Good luck.

[p]

Hey guys,

Now I am real freaked out with all of your comments.

Can someone give us some positive results please!

Has someone gone through an Ablation in this place?

By the way my doctors don't know exactly where my rapid heartbeat is starting from.

Unlike your daughter my case is quiet different.  I am from India originally and now residing in California, USA.

Do people in India have different heart problems than most white Americans?

Since most of America is all-white!

No offense to the Caucasion population, but this is a good question.

Regard--scared to death:P

[p]

I can't end up with a pacemaker I am only 19!!!

I lift-weights, I ride a bike, I used to do Karate(Almost a brown belt), and I love basketball--I can't play basketball any longer though.

But I am still pretty healthy.

I weight 134 lbs and I am 5"11 and 1/2.  

I even stopped growing taller once I found out that I was sick.  
If I didn't have this rapid-heartbeat problem I would've been around 6"2 already!  **** I hate this.  I wan't a cure--I know I sound selfish and greedy, but I am only 19 years old.  No-one understands my problem.  People laughed at me in the Gym at HS when I used to get the rapid-heartbeats after playing BB or some other real physical activity.

Now I am in College and desperate to get a cure.  Please I cannot live with a pacemaker.  Death is better than to live with a disability!

Palpitations are common for me now.  I have lost about 15 lbs since last year due to the stress.

It is more of a psychological thing than physical.  

May God have mercy on my soul.

Doctor I wan't the best damn doctor in the World.

Please find the best doc for me.  My family is going through hell because of the fear.

I don't care about the money because I will always be able to make money once I get a cure--I am planning to make a million dollars, but in I must be cured first!

If all of this sounds selfish and greedy to you; please try to understand where I am coming from--When I was 9 years old I had no shoes, no clothes, no life, I was very poor, and I lived in a small village in India.  I've been struggling to stay alive since the day I was born.  And this rapid-heartbeat problem is not helping me none.  If I get disabled I won't be able to survive!

Regards:P

[joan mullen]

Thank you for your response cardio MD.  I feel that I have a very good EP MD but am interested in a second opinion before this ablation for my daughter.  We live in MN and have seen a MD at the Mpls. Cardiology Associates.  Do you have any suggestions for a second opinion MD in our area?  Also could you shed some more light on what cristo terminalis tachycardia is?  Thank you.

Dear P:
Thank you for your response.  I am truly sorry that you are afflicted with a tachycardia that hinders your life to the point that you would rather die than receive treatment (i.e. a pacemaker).  I understand your anxiety and stress level but I am a Christian and know that God works everything to the good of those who love Him. Romans 8:28.  My daughter has that security in her life and we know that the Lord will direct us to the right answer for her and we pray that he does the same for you.  In the meantime we are still trying to collect information, "do our homework" as Hi on Monday indicates (thanks) and keep level-headed about this.  It is certainly not a life-threatening situation as we have been told by her MD but she would like to lead a more normal lifestyle, just as you wish.  Keep positive and try to find your answer.  

If anyone else has been diagnosed with cristoterminalis tachy please comment.  Thanks!

[Judy Goodrich]

My husband has ventricular tachycardia.  He has a defibrillator.  He received his second defibillator last October.  He is currently taking tenormin, mextatile, postassium supplement, magnesium supplement, Xanax, daily vitamin along with vitamin E.  He is 44 years of age.  He does not sleep well at night and some of his epsidoes of v tack  occur at night.  Could he have a lack of oxygen??   Just this week he had 70 episodes of V Tack at 4:30am--We called 911 and once he received oxygen he did not have any other episodes.  This was the worst that it has ever been.  He usually only has a few per month.  His doctors now are recommending he begin to take Amiodarone.  We have read about the serious side effects of this drug and are very concerned.  Could someone give us some advise.

Regards- D & J (We are very worried)

[p]

I will pray for your husband.

My heart goes out to all the people with heart problems.  You know something, I didn't know how the heart patients felt until I got a heart problems myself.  At only 19 I am already getting rapid-heartbeats and I might have to go through an EP and Ablation.

What happened to your husband?

Was he always sick?

Tell me his story.  Have faith in Jesus Christ.

Regards:P

[chris]

i had an ep done.  i will be honest i was scared to death.  i had a really prefect health life with no childhood diseases or anything real serious beyond the normal colds and sore throats.  in 7th or 8th grade i started having problems with my foot.  it was hurting and swelling on me.  i had many heart test, blood work and even went to a foot doctor.  the only thing that was said was i had an immature artery in my left leg.  no big deal.  years went by and i had two baby girls.  my left foot would swell to look like a blister that could pop at any minute.  worst with my second.  after breastfeeding i went to a foot doctor because my foot was hurting real bad.  well he found a problem and trying to fix it with shots we came to the conclusion that i needed surgery.  i have never been put under.  i never did drugs.  i had no idea about surgery and what happens and i was scared to death.  i got put out with versad(sp) among other drugs and woke up going into v-tach and irregular heart beats.  i ended up in the hospital twice for a week at a time and they ran every test possible to try and figure out what was and still is wrong.  he said i have non-sustained v-tach after doing the EP but if my syptoms (symptoms) get worse then we can do the ablation.  but when they do the EP they give you medicine to calm you and you are.  and you are happy.  the only bummer thing is having to lie real still for hours after.

[chris]

i had an ep done.  i will be honest i was scared to death.  i had a really prefect health life with no childhood diseases or anything real serious beyond the normal colds and sore throats.  in 7th or 8th grade i started having problems with my foot.  it was hurting and swelling on me.  i had many heart test, blood work and even went to a foot doctor.  the only thing that was said was i had an immature artery in my left leg.  no big deal.  years went by and i had two baby girls.  my left foot would swell to look like a blister that could pop at any minute.  worst with my second.  after breastfeeding i went to a foot doctor because my foot was hurting real bad.  well he found a problem and trying to fix it with shots we came to the conclusion that i needed surgery.  i have never been put under.  i never did drugs.  i had no idea about surgery and what happens and i was scared to death.  i got put out with versad(sp) among other drugs and woke up going into v-tach and irregular heart beats.  i ended up in the hospital twice for a week at a time and they ran every test possible to try and figure out what was and still is wrong.  he said i have non-sustained v-tach after doing the EP but if my syptoms (symptoms) get worse then we can do the ablation.  but when they do the EP they give you medicine to calm you and you are.  and you are happy.  the only bummer thing is having to lie real still for hours after.

[Sandy]

Dear P.

Please do not worry about having a catheter ablation.  These procedures are relatively simple for the patient.  They are also relatively safe.  I have had both an E.P. study and an ablation (only 6 weeks ago).  I too was scared about the procedures, and very anxious about the future.  When I had these procedures, the medical staff was excellent in helping to relieve my fears and discomforts, and making me as comfortable as possible.  The ablation was not as bad as I made it out to be in my mind.  I went into the Cath-Lab, had a few monitors attached to me; was given an I.V. for fluids, medications to help with the study; and medications to relax me.  I went to sleep, and woke up four hours later when it was all done.  No sweat no pain no worries.  Although I can't ensure you everything will be allright, or the procedure will necessarily work, it is most defenitely worth a try.  It is better to have tried and failed than not to have tried at all.  I have inappropriate sinus tachycardia, and have had it for two years. I have tried 12 different medications with no success, and finally went for the ablation.  Unfortunately it didn't help me this time, but I have faith in medical technology; and the next ablation, or offer of a pace maker I have, I will take.  I may be afraid, but anything is better than living my life feeling like I do.  So you must first weigh your pro's and con's:  would I rather feel sick and give up a lot of my life, or would I rather take a very small risk, and try this procedure so I can live my life to the fullest?

[joan mullen]

Dear Sandy:
It was good to read your comments about ablation; my daughter had a severe episode of tachycardia as she got to high school yesterday and was taken by ambulance to the ER.  Obviously, this is no way for anyone to live and we have decided to go ahead with the ablation(s) in March.  Your experience sounded typical of what the doctors are telling us and I pray that she will have a similar experience.  It is unfortunate that the ablation was not effective for you at this time; sounds like you have a level head about it, though, and you are right, medicine is making great advances quickly and I pray that that holds well for your future, too.  It is reassuring to hear positive comments about this procedure - thanks!

[top tomato @aol.com]

i am a 43 yr old female in good health except for a few unwanted pounds. in the past two months i have experienced a sensation in the middle of my upper chest, right below my neck. it is a throbbing sensation with a warm feeling that i have to stop what ever i am doing , and catch my breath it lasts from 5 to 8 seconds. i have had 4 episodes. can you help ? thank you

[[e-mail]]

My 24 year old daughter was diagnosed with PSVT when she was 15 and it was more or less under control with Lanoxin until about 6 months ago.  She became tachy upon standing and remained so until it quickly subsided upon lying down.  Needless to say the obvious symptoms went with this; dizzy, lightheaded, short of breath upon any movement, fatique.  She was diagnosed with POTS (postural orthostatic tacycardia syndrome) and is supposed to start both Florinef and Midodrine.  She already has equilibrium problems because of major allergies (evidentally that inner ear stuff) and I wonder about the additional fluid retention and increase in blood pressure.  Does anyone have any info on POTS and/or these meds?  Thanks.

[yespiyen]

A related discussion, REG my  cardiomyopathy to do  Alcohol septal ablation was started.