Tikosyn uses

[Ladydoberman]

I realize I may be becoming a pain in the rear, but I am really frustrated and confused anymore.
My EP decided that I was in need of 3d mapping to try to get some of my problems under control. He sent me to the University of Chicago Hospital that is the only one in the area to have one. The Physician I was sent to decided that (get this) my EP, that only took me 7 years to find who actually figured it all out, was incorrect with his diagnosis and he would not do the procedure. Yea your EKG shows some P R thing and long Q something or other and you show abnormal electrical activity but I think its just orthostatic hypotensen. You just need a tilt table test. You should have heard my Doc when I told him this! :shock: (sorry kinda venting VERY frustrated!)
Anyways, I know this is nothing new to all of you but now my Doc is kinda at a stand still. I've been reading on this forum about the drug Tikosyn. I looked it up on-line and have a general idea about it. I think this might be right what I need. Can you give me a general Idea who would /would not be able to use it? Is it proper to mention this drug to my EP? This seems A LOT more agreeable than Amiodorone! I (like everyone else) would like to have at least 2 days in a row with NSR. Any info would be greatly appreciated!
One more thing please, while talking to him on the phone, he mentioned something about a "basket" thing. I was beside myself and not comprehending. Do you have any idea what that would be about? I wont see him till the 14th.
Please help, I just don't know how much longer I can stand all this.

[Reenie]

I don't know what a basket thing would be, no idea at all. You sure have had the runaround with your doctors. Have you considered going to either the Mayo or Cleveland to get a 2nd opinion on how your care should be managed? Maybe that would end some of the uncertainity on how to proceed from here. Either way you go, best of luck for getting good care. We're here for you.

Reenie

[Linda]

Debbie, By now, you've read enough postings on the message board to know that you are not alone in these frustrating trials. They just seem to go hand in hand with the diagnosis. Don't ever worry about coming here to complain or whatever. At the very least, it becomes a reasurance to the rest of us that it's "not just me". Someone will offer a hint that just might help a few of us - the same thing doesn't work for everyone.

Have you had a chance to talk with Lisa? She can help you sort thru questions and information, help you develope an organized approach to getting necessary info from your docs. She can also help you with input as to where and if you want another opinion. Sounds like your doc would be willing to work that way, but may need some help with options.

Good luck, please keep us posted - Linda

[Sarah]

Dear Debbie,

I have lived in and around Chicago my entire life and have seen doctors from three different hospitals (not the UC, though, and while they advertise a good game, I don't know anyone who has had a good experience with them).

That being said, I took Tikosyn for two years, 4 years ago, for the very reason you mention --I did NOT want to take amiodarone.

I believe my whole Tikosyn story is already in an old post, so please use the Search link at the top of each page (next to the FAQ link) to find it. THere are other Tiksoyn posts as well. and please feel free to PM me any questions you have after that.

And guess what? I got my Tikosyn at the Mayo Clinic.

S

(In a nutshell, it is a potassium channel blocker like amio. if norpace (disopyramide phosphate) worked for you, even a little, then tikosyn would be a good bed. if you haven't tried norpace yet, i would talk to you doctor about that doing that befroe tikosyn.

[Ladydoberman]

Thanks everyone, you do make me feel like I'm not alone! It's not my EP that is the problem. He fully understands the HCM and other problems that I have, its just that he doesn't have access to the equipment that is needed.
I have not had the opportunity to call Lisa yet as I work all hours and days. (railroad)
I haven't been on norpace but the Amiodorone helped a lot! Darn Iodine allergy!
How would I bring up these suggestions to my Doc? We have a great repore, but I don't want him to think I'm trying to play doctor or anything.

And Sarah, your posts is where I got the idea that that might be the thing for me! :D Thank you!

And I just noticed.... I GOT A HEART!!! :D (a good one finally!)

[Sarah]

Bringing treatment suggestions to your doctor is easy-peasy!

First of all, if he is the kind of guy who doesn't want to hear it or gets defensive if you have done it before, then that is the sign to get a new doctor!

Second, if he is receptive, then simply say, hey, you know I'm a member of the HCMA and some of them have tried Norpace and Tikosyn and it worked really well for them. Since they are both potassium channel blockers like amio, which worked for me, what do you think about giving one of them a shot?

If the doctor has really good reasons against them, then I would take that into consideration, obviously, but there is nothing wrong with bringing options to the table for the both of you to discuss.

Good luck!

S

[Laoshur]

Hi, I think this may be the "basket" thing he was talking about:

"Heart Wrap May Prevent Enlargement

November 28, 2000 - An Australian medical team has pioneered a surgery that wraps the heart of CHF patients in a mesh bag. This heart "wrap" prevents the heart from enlarging. The Dacron wrap is pulled over the base of the heart and attached with stitches. It is tightened so that it holds - but does not strangle - the heart, said Dr. Jai Raman. This "containment" may slightly improve heart function.
Seven patients have been in a prospective trial since April of 1999. All are doing well, according to Dr. Raman. The trial is now entering phase II. A Texas team will recruit another 30 patients.

Source: Reuters Health"

I found this on this site: http://www.chfpatients.com/surgery_old.htm

I feel sure that there must be more recent info, however,

Rhoda

[Ladydoberman]

I don't think that would be it. I don't have an enlarged heart. I guess I'm stuck guessing till the 14th. I have no idea what he was talking about. Thanks for the try tho!

[Pam Alexson]

I think he may be referring to a basket like implant that is used to catch blood clots should they break away and start to move. I have heard them referred to them as baskets . Usually placed in the lower large vessel . Often a person may have a predisposition or history of a deep vein thrombosis; making the possibility of a pulmonary embolism a real issue. If you also have a history of a-fib this is a concern as well; because a-fib can lead to blood clots too.

I hope this helps some.

Pam

[Ladydoberman]

Well saw the EP today. Thought you'd like to know what the basket thing was. What he said is that since he does not have 3D mapping, it is a catheter basket that he can place in the heart and expand that would give him a more precise reading as to where all the activity is happening. He called it a poor Doctors 3D mapping. LOL Then he can ablate a little more precise. I have ALOT of hot spots and when he zapped one, two more would show up.
Wanna hear a kicker? The doc I was sent to at U of C wrote his report. It says something TOTALLY DIFFERENT than what he said to me! (how surprising...) He said he wanted an event monitor to have his own reading for WHEN he does the 3D! There is NO mention of the tilt-table test or anything else he told me. I pointed that out to my EP that that was missing in his report. Double checked with my husband, and he remembers the same as me so it must be the doc! So since I want to wait for another EP study, we chose to go with Rythmol SR with Atenolol, and Altace.
Thanks for the pep talk. It was so much easier to discuss the different treatment plans with him. He did say he would like to put me on the Amiodorone replacement when it becomes available. But it is a wait. All these drugs do scare me for what they will do to my blood pressure. Rate is not an issue. I'd be tickled to get it down to 100bpm! But all this frustration has sent my pressure way up!
Well I'll know soon if this works.....wish me luck! :) My son has his appointment for next Mon. I hope it is nothing and I'm being over cautious. I just want peace of mind. He has so many symptoms. The same as I remember at that age. Well just thought you'd like to know about the basket.
You guys (and girls :D ) have made such an impact on my dealing with all this. I feel sooo much better just knowing your here. I have never been able to vent with others who understand where I'm coming from. It feels so good to be able to let it out and not worry about being laughed at!

[Reenie]

I'm very glad we've been able to help you get your thoughts about you before you go to the doctor. It means so much to know what you want out of an appointment, to be able to ask the right questions, and to be calm while you're there. I hope you get a good report with your son next week.

Reenie