Zero results from cath ablation, Whats next, Epicardio Ablation or Open Heart?

[jobob52 ford]

I am a WPW patient. Have been for two cath. ablations. netting no modifcations. Am taking flecainide, 150mg 2x daily and atenolol, 25mg 1x daily.
Meds kept tachacardia at bay for awhile (10 months) but is starting to break through again. Am on an every other week routine with ER and 12mg of adenacard.
Would like to hear experiences of Epicardio Ablation and Open heart procedures for WPW patients.

[TBIRD03]

My daughter (age 21 now and a NCAA College Athlete) had 2 catheter ablations for WPW and 1 ablation for SVT.  All three ablations were performed at The Heart Place, Tom Landry Medical Center at Baylor Hospital in Dallas Texas.  Her doctor was Dr. Kevin Wheelan and I highly recommend him - he saved her life.  Although Dr. Wheelan is not a pediatric cardiologist he performed the ablations and was successfull in ablating the WPW after two tries.  Because her case was very compliacted and she continued to have bad episodes of SVT we got her in to see Dr. Gillette.  

She had an EP Study (only) performed by Dr. Paul C. Gillette at Cook Children's Hospital in Fort Worth, Texas.  I believe Dr. Gillette was the doctor who first started using the catheter ablation radio frequency procedure for WPW and SVT while at the Texas Heart Center in Houston Texas in late 1970's.  Dr. Gillette is a pediatric cardiologist/electrophysiologist and we are very fortunate to have him in the DAllas/Ft. Worth area.

This all happened when my daughter was 14 - 17.  Her last EP Study was performed in 2000 - the year she graduated from High School.  She is currently a Junior and on a full volleyball scholarship to a NCAA Division II University.  Although there were many naysayers over the Years, she never let it (her heart)stop her and now she is living her dream of playing volleyball in the NCAA.  And yes, we did have to educate ourselves and others on her condition in order for her to continue with athletics.  She has had several episodes of SVT, some more severe than others, but she is just basically living with them.  She does not take any medication anymore.

After all that I have just been advised (Friday) from my mother, age 65, that she was just diagnosed with WPW.  We have thought that this was hereditary but have been looking at my fathers' side because of some prior history we found and now we may find out that it is my mothers side not my fathers.  She is getting further tests this Thursday and in the meantime I'll be out here on the internet gathering more information about WPW and it being hereditary.  It appears that it may skip a generation but I have more research to do on that.  I am aware that there are some heart conditions (possibly long qt syndrom) where it skips a generation.

If anyone else has had more than one family member diagnosed with WPW I would be interested in talking with you.  

[naldo]

Thanks for your speedy response.  Will check with these Centers.

Met w/a DR. today who is part of a group in Fairfax, VA called "Arrhythmia Associates"-- Del Negro & Freighling are the Main Doctors.

  He mentioned they're in the top three for handling my type of arrhythmia-- Cleveland & Mayo are the other two.  I noticed they were not listed by you. Any Feedback on this would be appreciated thru a post or email.  ***@****  

They also mentioned they use a high tech machine for mapping "Biosphere" was the name.  I noted in previous forums questions regarding the type of machine used to handle ablations.  Does it make a difference?

[CCF-M.D.-RCJ]

Potential centers that you may wish to try would include:

UCSF in San Francisco
St Vincent's Hospital in Indianapolis, Dr Eric Prystowsky
University of Michigan
Washington University in St Louis
Cleveland Clinic Foundation

Good luck.

[naldo]

I have the same situation.  I've had 2 ablations w/zero results.  One was performed in 97 at Fairfax Hospital, in Fairfax, VA. Was fine for 3 months w/no meds, then while playing in the pool it came back.  Just had another ablation done on Friday, March 21st at Washington Hospital Center, Washington, DC. Yesterday had to be rushed to hospital w/a heart rate at 250bpm.  

I've been on Flecanide since '89 150mg 2x's per day.  It seems since the first ablation the flecanide is not working like it used to.  So I tried the 2nd ablation w/no success.  Meeting w/DR's tomorrow to figure out how to proceed & what medication to take.  One has recommended Cardizem CD.  Please email me to discuss if you can.  Address is: ***@****.  

I am also trying to get insurance to ok a visit to the Cleveland Clinic.

Also, in the DR's post, he mentioned getting to a facility that has experience treating WPW patients-- please email or post more information on how I can also contact that facility.

Thanks!!!

[jobob52 ford]

I live in Salem, Oregon. My first procedure was at St. Vincents Hosp., Portland(8 hr procedure) Second was at Oregon Health Sciences University, Portland(9 1/2 hr procedure).
One of the 'spots' seem to be in the upper web between two top chambers. The other 'spot', due to size(large),density and stubornness seems to be on outer wall on left side.
Am looking into coverage(ins.) for using Cleveland Clinic for second/third opinion.
Thanks for your speedy reply, Bob

[CCF-M.D.-RCJ]

jobob52,

Sorry to read of your ordeal.

Epicardial ablation is performed here in rare circumstances -- usually for VT ablation, not WPW.

I would stongly suggest that you seek opinion from a center with extensive WPW experience.  Some of the WPW pathways can be very difficult to ablate, and require considerable expertise to manage.  If you can post your general location in a follow-up comment, I'll try to give you some guidance.

Hope that helps.