Hi Annie, as usual ms UP! You are so great. It literally brings tears to my eyes to think how great you have been to me and everyone. Thank you.
Hey wanted to let anyone that drops in know that, here on the 200th entry on this thread and after having the 5 box thoracoscopic maze done on me Sept 17th,walking into the procedure pretty blind in the beginning. I didn't have the people to talk to that had the procedure done as we do now. Enduring the ups and downs of the recovery over the last 7 weeks and having amazing support from so many people that were strangers to me when I started this and now are as familiar as anyone I'm close to. plus announcing I was taken off solotol yesterday, that I rode my bicycle 20 miles this morning with NO chestpains at all, then rode my motorcycle another 20 or so. The motorcycle isn't as big an accomplishment as riding my bicycle except it was about 40 degrees outside and I froze my butt off, I feel both are a pretty good accomplishment .My heartrate is holding steady at 73bpm.
Ya know thinking back and I'm so glad I have this thread to look back in time and remember what I/we had experienced over the last 7 weeks. I have gone through so many changes over the last 2-3 months. The decision to have the surgery, the planning, discussions with so many people, learning so many new things and most of all, opening up my hopes, thoughts and fears to ----all of you.
I just want to sincerely thank all of you, even the ones I had butted heads with and you know who you are, thank you thank you thank you for -------------being my friends and caring enough about this ole Cub fan to take the time to express your concern and love for me during this most difficult time for me.
I can only hope that everyone on this site, present and future, has as good an outcome as I have had so far. So once again I can't thank each of you enough for your support. I love you all.
Hey Pete. My HR is staying down so far. I do get really tired after walking to my bus. I am still coughing too, but am doing better day by day.
I agree with you that this thread is a blessing. I know that for me it has been great to know that what I am going thru is normal and that it will get better daily.
Linda had an EKG run today and she remains in "beautiful sinus rhythm." This is how Dr. Sirak described the trace after he saw the fax. It is a different world for her. Going from constant fatigue and breathlessness to feeling on top of the world. She still has some chest discomfort but we are optimistic that after one more week (six weeks after procedure) things will be close to normal. Hats off to you Pete and all others for sharing your experiences. Dr. Sirak is our angel.
So happy to hear that Linda is doing so well. That has to feel like a miracle after what she had been going through. Congratulations!! This should be a wonderful Thanksgiving for both of you....something special to be thankful for this year!
Still in NSR and feeling so much better. I have been able to walk from my bus to the lounge and not feel so tired. I am trying to walk more and tonight I have really felt more like myself. I am so glad.
Congrats Linda...glad that you are doing good.
I guess that Thanksgiving this year will be great for all of us. I give thanks to all of you for your support and knowledge that you have given me.
Hey Jim and Chris
Happy to hear you all are doing better!! My 7th week was a time when the pain all but left me. Chest is good, heart is good.
I'm seeing my cardiologist today so we'll see how the ekg goes, anxious to see that result. Dr Sirak and I were in contact about my concern over the elevated heart rate, just 75-78, He told me to chill out it will come down in time. My heart is still in the process of " deconditioning" Made me feel a lot better.
I'm glad everyone is doing so well. I'm, unfortunately in the throws of a-fib/a-flutter every other day. It's weird...I always convert back on my own, but it's annoying as he!! and drains me of any and all energy. The atenolol, like all the other meds doesn't seem to be helping. I don't want to admit that this may be a failed ablation, but.....
Pete--I'm off to Columbus today for my surgery on Wednesday, 11/17. Everything is go! I don't expect to be back on line until at least the 22nd as I will not be taking a computer with me. Will post when I get back home.
After talking with both Dr. Sirak and the mini-maze guys, I came away with the impression Dr. Sirak is much more advanced and the only arguments the mini maze guys had was about the 'dipole' instrument they use. Of course the instrument Sirak uses is a dipole and upon thinking about the arguments, I found the mini maze guys' didn't make sense. I find it funny so many people are singing the praises of the 5 Box technique on this and other forums and I can't find a single post about the Wolf Mini Maze or it's many related versions. I know there are patients out there but they're not very vocal from what I can tell.
So....I scheduled a 5 Box on December 15th. Dr. Sirak says he'll get me back on skis in January...I hope. This was due in no small part to this and other forums and several long conversations with Dr. Sirak. In the course of this research, I had to educate my own EP as to the work that is being done at OSU. We both investigated and came to a mutual conclusion that I will undergo this option.
Glad to hear you have made a choice in dealing with your afib. Being a scientist and choosing the TTM 5 box is validation to many of us that we also made the correct choice, even better you have the support of your EP, that's great.
Keep in touch and maybe I'll run into you on the slopes. Headn out myself in January.
Glad to hear you are better. I also am doing pretty well. I did have an episode of some, what seemed, like pretty bad heartburn when I was riding the other day. It concerned me enough that I'm backing off my workouts. I think I may have been pushing it too hard too fast. Other than that I feel great.
Hoping to hear from Chuck soon. He had the TTM 5 box done on tthe 17th. So he should be heading home in the next day or so.
Hey guys...still hangin in there....spent a couple of nights in the hospital...They doubled my atenolol and I was able to get some good Dr connections and to confirm, while wearing a monitor all the time, exactly what my heart was doing. I am having 3 days in between episodes and the last two episodes at least were shorter so progress is slowly coming.
Been away from a computer for a week or so. Linda and I moved from Lake City, FL to Sebring, FL. My bride is still doing very well. NSR with no relapses since her procedure with Dr. Sirak. She is my hero. So brave and agressive in facing her afib straight on to find a cure. She is now 6 weeks and 3 days out and still a little irritation at the incision sites but she is back. Those of you that are taking the bull by the horns will be rewarded by the results of the TTM by Dr. Sirak. We are elated that so many are doing so well!
I was just wondering and you guys this morning. Happy to hear things are still going well. It seems the TTM club is growing as there are more and more people " taking the bull by the horns" I'm still doing pretty well. Doing what I want when I want.
Still looking forward to hearing from Chuck anytime.
Linda, hang tough sweetie, it looks as though things are changing for you. As always keeping a good thought for you.
Pete, as always, thanks for the kind words and encouragement. And Jim, so glad your Linda is doing so well. That 5-box thorasic maze is sounding better and better. Can't wait to see how Chuck is doing. Later, Linda
Hi all! Hope everyone is having a great Thanksgiving in that crazy NSR!! Just thought I would leave a little message sinceit has been 10 weeks today I had the procedure done. Plus Linda and I made a mental wish several weeks ago when we were both in pain and inconsistent recovery to think ahead to Thanksgiving, and here it is, seems like yesterday! Yikes maybe it was and we got our wish??
Anyway, still doing well was taken of Metoprolol Wednesday. So I'm down to 1 med left that dreaded coumidon, never could spell it right. I should be getting the monitor after my third month. If I pass that regiment of monitors at 3, 6 and 12 months they will take me off the coumidon.
So hope find you all well and hoping for continued health for everyone.
Still hoping to hear from Chuck, anyone heard from him??
Happy Thanksgiving a day late. Have been in NSR for 3 weeks now. I will see the dr on Dec 3rd. We will see what happens with the meds. I hope that you all are having a great holiday. I am so thankful for nsr and for my health coming back to normal.
I really hope to hear from you all. Love Chris
Hey I am on a-fibcures at yahoo and Ken at that site would like information on females that have had the TTM 5 box done. I know him pretty well now and he's a great guy. It would be great if you would apply, yes apply, to belong and talk to him about your wifes procedure.
How's she doing these days?
Hello Pete, she is improving every day. She's now 7 1/2 weeks out and still in NSR and only on coumadin like you. I did "apply" for membership in the a-fibcures group on yahoo and am waiting for approval. I also sent Glenn289 a message with my email so we can communicate. Glad you are doing so well!
Thanks for writing to me and for sharing your email address. I just read all your posts on to see what's been happening with your wife. It sounds like she's doing spectacularly well. I'm really glad to see that.
I am trying to get set up with Sirak myself and even made a trip to OSU to do the procedure last week, but at the last second, the insurance company (BC/BS of Massachusetts) told us that they would not cover the procedure because it is experimental and unproven.
Here is the exact wording:
(in reference to the 5-box TTM procedure) " ... it lacks sound scientific evidence in the form of prospective randomized controlled clinical trials documenting its long-term efficacy and overall measurable beneficial impact on net health outcomes compared to conventional pharmacological or transcatheter treatments of atrial fibrillation."
As I told Pete, in the interest of courtesy to all of you, it is best that I not put my opinion of the above into writing on this forum.
The letter then goes on to say ...
"In lieu of this service, your policy does offer coverage for continued pharmacologic therapy of AF, transcatheter PVI/AF ablation, or the standard Cox-Maze procedure performed on a non-beating heart on cardiopulmonary bypass."
I believe this last paragraph does not imply that it is necessary to have a sternotomy, only that the procedure be done on a non-beating heart. Does anyone know of a procedure other than the Maze IV procedure that would satisfy the above criteria, but without a sternotomy?
Has anyone faced similar problems with BC/BS in other parts of the country?
Is there anyone else on this forum from the state of Massachusetts?
Sorry to hear about the shutdown of the procedure. Looks like BC/BS has you boxed in a corner as far as the TTM 5 box. Hopefully someone here or in the other site can help you answer your question. I do believe you will find someone from your area to converse with and maybe find a solution.
I am a 63 year old high school teacher beginning to plan for my Mini maze procedure on December 13th. I have only scheduled three weeks for recovery until I resume teaching. Am I being overly optimistic? Thanks in advance for any advice.
My experience as you can read on this thread was I needed more time than I anticipated. I am an industrial salesman and manager of a distribution center. I do a lot of walking around mfging plants and driving also. I had to take another week beyond the 2 weeks I had anticipated, I could/should have taken more. So if you have kids flying around you, I'm pretty sure you wouldn't want them to bump into you at that point. IMO.
I am a school bus drive and took of for a month. I still get tired and my mini maze was Sept 30. I am doing better now each day. Am still in NSR and am so glad of it. I took Pete's advice and slowed myself down.
Hey all! I just got back on to say hello and hope everyone is doing well. I am in my 12 week and I feel pretty darn godd these days. My chest has all but healed and I'm back doing whatever I want. I am due to get a monitor next week, I hope.
Heading to NYC at the end of the month with my daughter to celebrate her graduating from college, no more payment!!
So I hope some are till checking in once in a while and hope to hear from you all.
Hey Pete....yeah, I check in once in awhile if there's activity. Glad you are doing great! I was curious if you ever heard from Chuck? I'm still having tons of a-fib, no meds had helped and the Dr. here in Miss. wanted to put me on amiodorone. I just couldn't do it after all I'd heard from first- hand experience and all I'd read. So my only other option left was flecainide which I had taken yrs. back and was actually taken off of while on a stress test in Alaska...Dr told me it was too dangerous for me to continue it. Well, I didn't think I could continue living like I have been these last 11 weeks!!! It's been that bad. So far I've had two relatively short (less than 12 hrs) episodes while I've been on the flecainide the last 3-4 days, so I am seeing a little improvement for the first time on a consistent level. Hope it holds! Yaa for me!!!! It's certainly about time. Please do keep in touch, Pete and keep everyone abreast of your progress.
Greetings. My name is Ken from Loveland OH and I am a TTM/5Box "survivor". Just kidding. I am a full supporter and happy alumni of the 5B which I had completed on 9/28, two weeks after Pete. Pete convinced me to join up and begin posting here, so I have done so. I am getting used to seeing how messages work, so forgive any gaffs in working the forum software.
I am a retired mechanical engineer and suffered with paroxysmal afib for about three years until it started getting more frequent in Fall of 2009. I began serious study of options and the technology and science of afib. For a variety of detailed technical reasons, I rejected catheter ablation, even knowing about the fact that many people find a cure, at least after several procedures. I wanted better odds.
I studied the Wolf Mini Maze and even met with Dr Wolf here in Cincinnati. I read one message asking why more is not heard about the Wolf Mini Maze. One limitation I have heard mentioned, from potential patients as well as professionals, is that the statistics about the WMM do not follow the recommended protocols for definition of and measurement of success.
I was led to Dr Sirak and became convinced of the technical superiority of his approach. His accessibility is wonderful, and his success rates (using accepted industry protocols) is excellent. If there has been a drawback, it is his sample size (now about 105+) is low and so the error band around is 95% success rate is wider than it will be later when he has doubled the patient count.
I am a supporter of Dr Sirak and the procedure, but hasten to add that this is my conclusion using my logic and my own decision process. I have told numbers of people who I have counseled via phone and email that they should take my analysis and conclusions as starting points for their own due diligence.
Sorry for the long post, but I want to complete the story. I have been in perfect NSR from on the table (where Dr Sirak tried to induce afib and could not) to today. For 10 weeks my heart was a smooth muscle machine. However, about 10 days ago I began experiencing PACs, a premature atrial contraction. Using my own stethoscope, I can tell that my heart is in normal rhythm except for the premature beats. I am now researching the PACs (which appear after successful ablations). Dr Sirak predicts these will go away once the heart healing process is completed. He also has let me add atenolol, a mild beta blocker, which appears to help for part of the day. (More on that perhaps in another message.)
Sorry again for the long post, but I need to mention that I am one of the few who still is experiencing what is called "intercostal nerve damge", a natural outcome of the insertion of "ports" between the ribs. It has left a section on my left side along a rib being numb and slightly sore. It is not noticeable in the morning but as the day wears on, it gets more noticeable and uncomfortable. This is a normal part of the process and some folks heal up faster than others.
I hope I have not spoken too long but I wanted to introduce myself and let others here know that I am a resource for newcomers seeking a choice for their afib problem, and I can speak to the details of the Sirak 5Box.
Thanks, I look forward to hearing back from some of you.
Still working on learning the system, including checking the box "Add to Watch list".
In reading other threads, TTM/5Box seem spread out in various areas. So I assume this thread is not necessarily the "Home" thread for the 5Box. Is this right? I have not yet tried the search function, but will do so momentarily.
Thank you for your interesting and informative post. My Linda underwent her 5Box 8 days following yours. She is also experiencing the intercostal nerve issue. We read some comments from others that indicate that it may take six months for that to resolve itself. Here's hoping that it won't take that long but quoting my wife, "It's a small price to pay for the relief from afib."
Please keep us updated concerning your experiences.
Happy to hear your wife is doing well Jim. You are making a very wise decision to stay here amongst friends, take it from me. I really haven't had a lot of the nerve thing Linda and Ken seem to have, I don't htink so anyway. My chest is a little numb but in no way is it an issue with me. My HR is still a concern to me. I've never had such a high reat before, 80-85 BPM, but both my general and cardiologist said to not worry about it. I haven't really worked out as hard as I should be yet. Hopefully it will lower when I finally do.
Linda ----soooo happy to hear from you sista. Sounds like you have had a heck of a ride over the last few months. You remember I was on amiodrone prior to my surgery for about a year. I know all the nasty things it can do to your body. That's why I didn't take it for more than a year, but on the otherhand I never had a more solid strong HR, I think in my life! truthfully, I felt healthy, strong and normal while I was on it. I thought it was a miricle drug for a while. I'm also pretty lucky I never had any side affects from it. But I didn't want to take it long.
So, to let ya all know Kens a pretty cool guy, little windy sometimes----Jus kidn Ken don't shoot me. He's very well informed and has helped me a lot over the last several weeks.
I am so happy to hear that so many people are having succes with the 5 Box procedure with Dr Sirak. I've said this before, but I had a run of afib about six months ago, and it is so encouraging to hear that, should things get worse for me, that there is another option out there. So much of what you read about afib is that medication only works about half the time, and the side effects can be horrible. I like hearing that there is a potential cure!! I have a "friend of a friend" who underwent an unsuccessful ablation and is still dealing with persistent afib. I passed along Dr Sirak's website and all of your success stories!
Hang in there, everyone, and may we all continue in that wonderful NSR....one of those things no one appreciates until we don't have it!!
Thanks guys. You are a big part of the reason I'm heading down this road...you put me in touch with Dr. Sirak. He took it from there and I think this is the superior procedure for AF. Mine is usually set off by my autonomic nervous system (Vagus nerve), so it's been very difficult to control. I'm 10 years in and ready to be able to exercise (bike and swim...rugby is out since it bashes the rest of my body too much ;) )
By the way, I started a group on Facebook. If you're on there and want to talk to a larger group, join!
Annie, happy to hear from you too again. I have very much missed your sweet attitude and always positive comments. You were so helpful to me during the down times. Why this is just a big ole love fest isn't it!?
Hey Glenn, before I turned off the darkside, you know what I mean, I did see you were about to have what seemed to be a good discussion. Sounded as though it could have been productive, if bias was kept out of it. Hope you continue your search.
Leika, I'll keep a good thought for you next week. Ross is top notch and the staff is awesome. If you run into Tom, cardiac nurse and Emily, general nurse, tell them I said hi and tell Tom my son got 2 deer this past bow season.
Ken you're not too windy, you just have so much intellegence oozing outta that head of yours, you have to let it out, good luck on your monitor.
So I had my first Love injection. Not bad. Have another today and then end on Saturday. Nothing Sunday. Mupirocin Ointment in the nostrils twice a day until Monday is a little wierd. Pre-op went fine. All levels and counts were normal. Anesthesia says that I will have a breathing tube down my throat but probably will not be awake for it. That's good. The procedure to last 3 hours and I will be up and eating the next day. The one question that I have never asked is about the discomfort immediately after. When you're about to go on an adventure, I guess you should leave a little mystery.
T minus 48 hours and counting,
Leika: "Look, I know it's stupid and weird, but neither of us can do this alone, so we got to do it together, right? You with me? So let's do this thing!"
- Linguini to Remy the Rat in Ratatouille
FYI, for me, I didn't really feel a lot of discomfort immediately afterward, I was on some pretty good drugs and still had a lot of fluid in me. They pump a ton of fluid i ya for some reason. After a while I didn't really care for the pain meds and stopped taking them, within 24 hours. I eventually took one vicadin a day mainly at night. But everyone is different so good luck to both of you and enjoy the drug to relax you right before your put under, it's great!
No operation that goes into your chest and works on your heart is going to be "pain free". These items of discomfort are not, in the grand scheme, really BAD, but I did not like them.
Coughing hurts. This is why I told you to ask for your red Heart pillow. Clutching while you cough makes it much less painful.
Getting the Foley catheter out is ..... well ....... not one of my favorite events. Plenty of opportunity for some sarcastic give and take with the nurse removing it.
Ditto getting the chest tubes pulled out.
For me, I woke up "instantly" after going under. Six hours later. My six hours were longer than average as he had to do a lot more pre-operation ultrasound and electrical measurement stuff.
I cough a lot still and my primary said breathing tube insertion and removal can sometimes cause irritation that manifests itself in coughing.
All of these things were minor and the benefit is losing the afib. But you wanted to know some details about what you were getting into, so these were things that happened to me. Pete is right, everyone is different.
I have not been here in a while. I have had a couple of times where my heart rate went up some and taking metoprolol brought it down. Thinking that I need to be on a dose that is a little higher.
I took a little bit more than my normal dose and withing a few hours the rate comes down.
I am back to work but am looking forward to next week. This is our last week for work for 2 weeks. I am a school bus driver and am looking forward to my vacation. Yeah
I am looking into doing Qigong for me. It is a gentle exercise and I am excited about it.
Glad to see that everyone is doing good. I have been thinking about you all. Take care.
Afib first entered my life in 1997 - went persistant/ permanent in 1999. In 2006 two ablation attempts were unsuccessful. This spring I read about Dr. Sirak's work, and I went for the 5 box procedure on 10/29/10. AT PRESENT, SUCCESSFUL. However, a day after surgery, with afib gone, a defective sinoatrial node was revealed. 3 days later it was corrected with a pacemaker. I was started on Amiodarone, and discharged with instructions to continue the medication. My condition improved for about 6 days, and then things started to go downhill. By 14 days post op, I was essentially bedridden, unable to walk more than a minute without sitting and resting. My symptoms were difficulty breathing , nausea, and extreme fatigue. For a few days I could not sleep lying down because of trouble breathing. I discontinued the Amiodarone on post op day 16. I am now 29 days without Amiodarone - nausea is a little better, breathing a little deeper, but fatigue rules my life. QUESTION: Have any of you folks had Amiodarone adventures, and how did it resolve ? Thanks
So sorry to hear about the trouble. I have taken Amiodarone but my experience was quite different than yours. I discovered my afib about 2 years ago. They started me on Amiodarone shortly afterward. My cardiologist was very good about explaining the side effects but I decided to take it anyway. I brought me back to nsr and it kept it there for right at a year. It was the strongest heartrate I have ever had, all things considered, I loved it. I was able to workout and do anything I wanted during that period of time. They tried Multaq when Amiodarone ran it's coarse but I hated it. It turned me into a zombie. My cardiologist kept telling me it was the same thing but my experience was it was quite different.
I have had no side affects apparent from taking Amiodarone yet.
I hope things smooth out for you soon and hope your 2011 is a strong heartbeat year for ya.
Rick: I am sorry to hear about your difficulties with the meds. It is too bad the sinoA node went bad. As mentioned before, I am still having PACs after some weeks of "quiet" NSR, and am on atenolol which is not doing that much to control them, although I do not notice them as much anymore. Some have said you get used to them; some have said the atenolol helps you not notice them. Not sure which it is.
Again, sorry I do not have any "words of wisdom". If you have a pacemaker, doesn't that automatically keep you in nsr and if yes, why the amiodarone (or anything else for that matter)??
This sounds quite troubling and I hope you will find the information you are looking for. Has anyone told you that you have "sick sinus syndrome"?
I googled "sick sinus syndrome amiodarone" and found some interesting
articles. Take a look and let us know what you think?
However, most important, I would suggest that you check out some of the other threads on MedHelp. I believe some of those threads are focused on anti-arrhythmia drugs and the effects of amiodarone. If it is indeed the drug that has aggravated your problem, then those threads may be more useful sources of information relevant to your situation than this one.
If you do check out the other threads, please do let us know what you learn. All of us here are very interested in everything related to AF treatment, especially as it pertains to people who have done the TTM/5.
So please stay in touch and let us know how things develop for you.
I'm home today (Thursday), three days after my from my Monday morning 5-box Mini Maze with atrial ligation. In perfect NSR and my blood pressure is back to normal ranges. I'll discontinue the Diltiazem until I find a reason to continue. Will continue with Warfarin until my cardiologist feels comfortble taking me off. As with Pete, I suffer very little discomfort. Well, lets qualify that. Little discomfort given that I am religious in taking my Oxycodone-Acetaminophen every 4 hours. As I type this I feel great and have zero pain. Most of the time I spent healing in the hostpital I spent looking at my sinus wave, BP and Oxygen saturation. Loved every minute!
Pretty cool ain't it??! NSR is a sweet ride after having afib. I hope everything holds but if it doesn't don't freak out. Mine went back into afib about a week after getting home. It held there for about another week until I was cardioverted, been holding steady ever since. Also, to be clear, I didn't have any discomfort directly after the surgery mainly because of the fluids and drugs in my body, but after about a week or so I started feeling all kinds of stuff happening, try not to freak on that stuff either. Dr Sirak is like the captain of a ship in stormy waters sometimes. With his experience and knowledge and your patience he'll guide you to calmer waters.If you start to have discomfort it might help to read my thread from the beginning. I listed pretty much everything I was feeling and what we did to try and correct it or wait until it corrected itself.
You have a lot of good people along for the ride also, use us all, we want to help.
Yes, I am continually amazed. I've got eight or nine incisions in my chest four days after surgery and I'm walking around trying to decide what to make for breakfast.
My surgeon was Brian Cain. He leads the largest cardiothoracic surgery team in the San Francisco Bay Area. I would recommend him highly. I don't think you have to be a Kaiser patient to be his patient. I was a longstanding/persistant afib patient within the Kaiser system. I'll wait a week and report back any changes. Hopefully all will remain as it is, but without drugs. Interesting, Dr. Cain noted that a team member of Dr. Sirak was present and observing during my procedure.
Congratulations! What have they prescribed for meds? I am currently on Percocet 5-325 mg. every 5 hours. Additionally I will continue with my Warfarin and Diltiazem schedule.
It's nice to change the diagnosis from "continuous A-fib" to "continuous NSR".
i have had bypass surgery 6blockages 4 they bypassed18 months ago had pacemaker put in 5weeks ago feel worse now than before .do tou ever feel good again ?guess i just needed someone to tell it to thanks Backwater
No percocet today or yesterday. Still pretty sore but managing just fine with naproxen and/or ibuprofen. We walked to dinner tonight from the hotel...about 3 blocks and I was fine...a little light headed but not bad. I can't wait to get back to some better weather than Columbus, OH and start walking...then jogging...then???
Man it's good to see you two are getting along so well. Steve 3 blocks so soon after the procedure is great! Just to let you guys know. I'm in my 14th week and L can do whatever the heck I want to do these days. My son and I played racquetball Friday and I am lifting weights again with no problems. Only med i'm taking is coumadin, i think basically it's a formallity for now.
Again glad to see you ae both doing so well, great Christmas for you guys.
It is good to hear everyone's progress after their procedures.
I am in the fourth day of my seven day monitor test to prove continuous nsr (I guess I should say continuous non-afib). I am not sure whether the presence of PACs means I am not in nsr, at least while the PACs are going. But what about long hours without any? Anyway, the PACs are not noticeable at all and may be diminishing in frequency.
How do people feel with "rib pain and numbness"? Have any? That must be what the percoset is for. Let us know when you stop the extra pain meds. My rib "pinching" still goes on but is only noticeable at night (before bed). I think it may be slooooowly getting better. Some heal quicker than others.
Hey buddy, glad you're getting better. Hopefully those pesky PACs will go away permenantly soon. I still haven't heard anything about a monitor. I think I'm going to call that persons cell phone number you gave me to see when or if I'm in line to get one.
My chest still has some numbness to it but it's really a non-issue with me. I still have that freakn 80-85 heart rate and it still bugs me. I'm doing more cardio lately and I would think it would be coming down a little, but nothing yet. It doesn't affect anything I do other then it annoys me.
It's so comforting to say good morning to people who sincerely care about your circumstance and share similar issues. I am certain it aids in my healing.
I've only been diagnosed with a-fib for 4 years. I'm not sure I have ever had PAC's because other than shortness of breath and my legs getting tired when climbing stairs, I have been in permanent asymtomatic afib for at least 4 years.
So far I've been able to drop the percocet by 50%. Taking 1 5-325 tablet every 4 to 5 hours hours. So far no numbness or rib pain. My heart rate continues to stay in the 70-80 range even while I'm taking a calcium blocker, diltiazem, to lower it. My goal today: get outside and walk...it's no longer raining and sitting by a fire all day is not helping my energy levels!
Linda and I are thrilled to read the great reports from the contributors. Amazing report from Steve that he has so few "discomforts" this close to the procedure. Linda still continues to improve. She has a new primary care physician and cardiologist in our new town and both say she is doing great. The cardio put her on carvedilol and lisinopril as of last week to lower her heart rate. She was running at 82 - 88 bpm and now with the new meds she is in the low 70 bpm range. He said this would allow the heart to recuperate faster. No bad side effects so all is good. She is looking forward to her three month monitoring next month but up to this point it's been nothing but continuous NSR.
All the best to all for a very Merry Christmas and a NSR New Year!
Hey you guys....I am now on Flecainide for about 2 1/2 weeks. My Dr in Miss. doubled my dose 4 days ago and guess what? I have been in beautiful sinus rhythm for 4 days and counting! My heart rate is a stable 72 bpm. :)
I had my 5 box two days earlier (Dec 13), but I'm having trouble dropping my meds. I'm currently at 1/2 tab of Percocet + one reg strength tylenol every 2 hours. This is down from 1 Percoset every 2 hours. Have you been able to get totally off yours?
Hi all...I have been so busy and sorry that I have not checked in.
I am still in nsr but sometimes my rate goes up a little. After 14 years of being on meds and a-fib coming and going. I believe that my heart has to realize that it is on its own. No meds to take everyday. This is a wonderful Christmas present to be in nsr and not have to worry as much about a-fib. My hr is in the 80's at this time and that is where I was before this all started. I am glad with it.
I want to wish all a Merry Christmas and thanks for being my elves during this. You all have helped me so much. I would have been lost with out your help and advice and stories. Thanks you.
Glad to hear good news from all.
I'm off the percocet completely. Dr. Sirak gave me a prescription for 375mg Aleve (equivalent) and I take a couple of ibuprofen when I begin to feel feverish during the day and that usually takes care of it. I had a couple of pinched nerves in my neck the other day and had to take a percocet for that but that's about it for pain. I'm on a minimal dose of Sotalol (1/2 80mg twice a day) and the Dr. mentioned taking me off that next week if I don't have any AF episodes...which I haven't.
I've been walking around the block every day and have even now started going up the hill. I'm taking the kids skiing next week and may even get out there and hit the easy slopes myself....we'll see.
So maybe I'm enjoying the percocet too much! But I have cut back to 1/3 of the dose prescribed. Thanks for mentioning the fevorish stuff. I've had that a couple of times and worried that it might mean something, but an hour later it was gone. I've not been put on any arrhythmia drug. Instead I'm continuing on the rate control drug Diltiazem and the Coumadin that I was on prior to procedure.
Congrats on your stellar progress! Keep in touch.
Question....Has anyone had problems with a slight increase in their HR after the surgery? I am at about 3 months and now and then my HR goes up to about 95. I am hoping that my heart just has to get used to being without the meds and still recovering from the surgery. It is not bothering me too much just a naggy. I also know that I need to stay away from chocolate...it can make you HR go up. Thanks for your help.
Merry Christmas! Linda is almost 3 months out and her rate has been somewhat elevated. Her primary care Dr. said her 80's rate was high normal but her cardiologist put her on medication to lower it saying it would allow faster healing. She is now in low to mid 70s with no adverse side effects. Plus she is no longer "bothered" with the elevated rate. Sinus rhythm as been perfect since the procedure. All the best!
I to have had somewhat of an elevated heart rate, 80-85BPM as I've mentioned before. I have no adverse affects from it other than some annoyance knowing it's there. I am playing racquetball, walking on a treadmill and hitting the weights, but it still bugs me it's not coming down. My doc, not dr Sirak, said he could put me on meds to lower it some but he said it shouldn't be a health hazzard without.
I am continuing to monitor it and will decide in 2011 what to do long term.
Happy as heck to hear Steve, Mike, Chris, Linda, and Glenn are doing so well on this Chrismas day.
Hope we all enjoy health, happiness, skiing, and family this holiday season.
Hey Guys....I'm still doing great in constant NSR for about 10-11days now. My pulse stays in the upper 60's. Hooray!!! The only thing is....what will happen when I stop taking my anti- arrhythmic drug. Do y'all think I'll stay normal after all the trouble I've had the last 3 months?
Just wanted to let you know that I am still here. Doing pretty good. Want to wish you all a Happy New Year. Thanks for being here my friends...you have all helped me so much this past year. It is nice to know that what I am going thru is normal...okay what is normal? LOL
So how is everyone doing? I am off all meds and am learning about my HR and was is normal for me. After 14 years of meds and now being off them it is interesting finding out what my norm is. LOL
Hope that you all are doing well.
Just checking here after a long absence. I is hard to visit all of the afib forums, especially when you are post procedure. Yet I try to stay connected and want to help newcomers who are getting into the solution process for their afib.
I passed my 3 month 7-day monitor test with flying colors -- zero afib and my PACs have disappeared. Heart rhythm is normal and strong. I am weaning off of the atenolol which Dr Sirak had prescribed for the PACs. But they have been gone for weeks now.
I still have noticeable rib numbness and some swelling, but it IS getting better each day. Some have this for a very short time and others have it longer. I am in the longer category. But it is getting better.
Glad to hear that some who have had the 5Box are enjoying NSR.
I'm 3 weeks out from my 5-Box procedure now and my shirts still feel like they're made of sand paper but my heart is going strong as well. In fact, I was able to ski on Saturday; I sent a picture to Dr. Sirak who said he was jealous and was very encouraging. He halved my sotalol to 40 mg/day, which has been quite a blessing, and we are planning to get completely off it by the end of next week. This will leave me on either ibuprofen or naproxen and an 81mg aspirin a day by the end of the 4th week. I plan to increase my walking from about 1 mile a day to 2 by the end of the week. Of course I'll ski on Saturday and plan to do more than just the easy blue runs...no double black yet but that's coming...:)
It's so nice to get to the lodge while still in NSR and enjoy a nice beer with my lunch. It's good to be on this side of the procedure and looking forward to a life without A-Fib. I'm cautiously optimistic.
Sounds like your pretty much experiencing what I did with the shirt on the chest thing. I found having someone very lightly rub my chest oddly enough felt good. But it does take time for the discomfort to go away. Sounds great that you are able to ski, man I was supposed to go but the trip to NYC with my daughter was more of a cost than I had anticipated. I don't need to tell you walking is a great way to recover quickly.
It's unbelievable how well I feel only 5 weeks out from the 5-Box. Sure my shirts still feel like sandpaper, especially with the hair growing back, but my heart isn't missing beats. I walked 2 miles on Monday with part of it up a good sized hill and against a stiff breeze and did an elliptical workout for a half hour yesterday (kept HR at 120 for the work out). I'll rest today but tomorrow I'll be back on the elliptical or a stationary bike (it's windy and cold here or I'd be outside on my road bike). I've been skiing the last two weekends and have been working back up to the black slopes -- the kids want me back on the double blacks but I think my legs are now the issue ;-)
Pete - I can't thank you enough for pointing me to Dr. Sirak. Not only is he a skilled, innovative surgeon but he's a decent human being and is easy to talk with.
I hope everybody is having success with your procedures as well.
Great news and was happy to help. You're recovery sounds like it has been on the rapid end of the scale. That's the type of recovery Dr Sirak wants everyone to experience I think. From my talking but mainly listening to a lot of others I would advise caution on pushing yourself this early however. Your heart is still healing and as Jack experienced you don't want to throw yourself back into afib. But that aside I'm happy as all get out you are doing so well Steve.
I am in the 5th day of wearing my monitor, it's a minor hassel but worth it. I send it back Saturday and hopefully all is well. I am also in a daily workout program now while in almost my 18th week of recovery and I am using weights, cardio, pullups, yoga, plyometrics and situps. I am on a pretty high protein diet also. I haven't experienced one discomfort during all of this so far.
Similar recovery after 5 weeks here too. Went off pain meds at three weeks. Back to work at four weeks with no problems. I, on the other hand, need to boost up my exercise program. Doctor says I may begin swimming again. Now to find the time....
Best to all,
Mike in Walnut Creek
I let Dr. Sirak know weekly what and how I'm doing. He keeps saying I'm on no restrictions. I told him I wanted to ski a few weeks ago and his response was 'don't let me keep you from skiing'. So, I'm off and running. It's more the atrophy that's hard to get past and the reason I'm keeping my HR around 120 while working out rather than the usual 135 to 140. With no stray beats so far...I'll take it!
Just a note to say hi to everyone and hope all is well. I am in my 23rd week of recovery and was taken off coumadin last weekend. I am no longer on ny meds for the afib I had. I am working out and having a great time.
I hope everyone is doing as well and hope to hear for you all.
Could you give me Dr. Sirak's website? And where does he practice? and what exactly is the 5 box procedure? I'm in paroxamal AFib, apparently moving toward persistent. Spent 4 days in the hospital over Christmas and do not want to repeat that. It sounds so good for you all to be back to good health with this procedure. Guess I'm looking at my probable future and grateful to have all this information with the experiences you 've shared. I'd like to hear more about the 5 box. Thanks.
Hello: Dr Sirak can be found by googling him at Ohio State University at Columbus, Ohio. I had the TTM or 5 box procedure in November, 2010, and have dropped all meds except the coumadin. Currently in NSR and am currently wearing a holter monitor to verify ongoing normal sinus rhythm. If so, will drop the coumadin and be med free. Hooray. Good luck, Wayne
Just wanted to drop in and see how everyone is doing these days. I have pretty much gone on to a yahoo site where there are people who have had the same procedure as me. I am doing really well these days. still in NSR and continue to be off all meds. Hope to hear from everyone that supported me during my recovery.
Name is bill; scheduled Tuesday june 27 with dr sirak; we have only spoken briefly on phone as i am from Connecticut.researched on 'net.
I had no second thoughts until this morning. Have been 'permanently' in Afib, effectively asymptomatic, for 3+ years managed by 50 mg atenolol and of course the rat poison a/k/a coumidin. i turn 50 next month in very good health other than managed 'severe' OSA( obstructuve sleep apnea).
I do what i want, feel bascially great, just a bit more tired than i should be.
due to a low CHAD score, if was NOT on coumidin for 6 months or more, and did go thru what appeared to be a TIA but was officially diagniosed as a very minor stroke in January 2011.
So, if any of you were me, would you endure even a procedure as 'good' as Dr Sirak's, or resign yourself to Afib and its risks possibly forever??
I was in permanent AFib for over three years. I had my procedure ( totally thoroscopic mini maze ) performed at Kaiser in San Francisco. It was a breeze. In and out in four days. Three enjoyable weeks off work. I'd do it again without a moments hesitation. Have been in perfect NSR for six months. No longer worried about possible long term damage to my heart from continuous AFib. This procedure with Dr. Cain has produced a 96.8% success rate at the 6 months.
Good for you....! I too am in the club of having a successful TTM procedure last November, 2010. Still in NSR, no meds, no blood thinner. Playing golf and tennis, plenty of energy and feeling good overall. Stay well.
I enjoyed reading about your successful five-box surgery. Congratulations! In the five box yahoo group I heard about someone who was racing up and down the hallways right after surgery. I had to come here and check it out for myself!
How long had you had the defibrillator in you? Was it because your heart was in danger of stopping? If so, no wonder you are so happy! How long had you been in AF prior to surgery? How are you doing now that you are a couple of weeks out? (sorry for all the questions.. curious!)
I had the five-box surgery with Dr. Sirak as well, on May 17. I was walking the halls of Ross the next day, and was released on the 19th. On the 20th I walked all over downtown Columbus. I celebrated my week anniversary by going for a 10 mile bike ride. So it sounds like we were both quite lucky and handled the surgery very well.
I was diagnosed with persistent AF in June 2010. I believe that I had had AF since around 1999, starting with night palpitations, but never went to a doctor to see what the problem was. Once diagnosed, I did the typical rate control followed by cardioversion. I stayed in rhythm for almost 5 months. After I went back into AF, it was going to be antiarrythmics... I decided I wanted the AF to be cured and signed up with Sirak.
Did you have your surgery on June 27 as planned? I just joined this forum today... I wish I had seen your post earlier. I was similar to you... 50 years old, persistent afib, fairly asymptomatic (just the typical exercise fatigue that we all get used to). I wanted a cure and went to Dr. Sirak for it. I had my five box surgery on May 17.
So to answer your question... I would never permanently decide to live in AF! Let us know how you are doing. I hope you are having as easy a recovery as Bob and myself.
It appears that you had your surgery more than a year ago. Have you remained in NSR to date. I am having my third electrocardioversion in two weeks and I am interested in having the 5 box surgery if it comes back out again. The first electrocardioversion lasted 18 months the second 31 months. Hoping this last longer. I have persistent AF
Thanks for responding. May I ask you how was the surgery healing process. Was it pain for a long period or short time. I hate taking pain Meds. Had shoulder surgery after slipping on ice and needed 4 pins. Took pain Meds for one day. Doc who did surgery could not believe I was not taking pain Meds.
I too am from MA but I am on Medicare with BC/BS supplement to pay what Medicare does not. Wonder if the will reject me also even though they are not the primary insurance and now wondering if Medicare will also say it in the trial stages.
There is a yahoo website where 5 Box alumni gather to discuss their experiences, research, recovery and as you can see from Glen, who is an alumni also, insurance issues. Glen can tell you more about it but it's at yahoo groups under afib 5 box I believe., I don't visit it as much now since I really have no questions and no longer have the issues I had previously. Plus there are many more people way more into it than I am.
My recovery was about 4 weeks before I could really feel normal again. Some others had a very fast recovery as you will see at th web site.
I see you had the five-box procedure and had to take anti arrythemia drugs after. Are you better and are you off the drugs. I want to have the surgery because I do not want to get on those drugs. If you are better what was your full recovery time.
Hi Joe, no i did not have the 5-box, I had the traditional PVI ablation with Dr Andre Natale. My heart did not settle down after my ablation Sept, 2010. It took 3 mo. more of anti-arrhythmia meds and lots of prayer to finally say good-bye to a-fib. Over the last 6 mo. or so I have had some short episodes of tachycardia but the last month or so I have had none of that either. I have heard, as I'm sure you have, wonderful things about Dr. Sirak. If you choose the Pulmonary Vein Isolation ablation I would highly recommend Dr. Natale in Austin, Tx. Good Luck in which ever way you decide to go. I am very glad I had the procedure done.
I had paroxsysmal a-fib which started out the first few years with 2-3 episodes a year and gradually increased to weekly episodes of 24-36 hr duration or longer. Incredibly, I never had to be shocked back into NSR. I was on many different anti-arrhythmia meds throughout the years and eventually every one of them would stop working. I feel like my only way out was an ablation. My Dr. might tackle persistent a-fib (do you have it 24-7?) Some Dr.'s won't.
Yup...24/7. I am wondering while in AF how much damage I am doing to my heart. Tomorrow I am going for an electrocardioversion. This is my third one. First one lasted 18 months and this last one 31 months. Now I am hoping for at least 4 years and by that time some new innovative technology will be out.
Have parox afib 17 years on and off and it's worsening fast. Had ablation 3rd week of Dec. but it came back in 2 months. My rate often stayed above 170 and this lasted 2.5 days. Hospital convinced diltiazem and digoxin converted me but I wonder why they took more than 2 days and my rate was so high. Having repeat ablation in a few days. Now have left ventricalular hypokinesis and hosp. says that might be from the ablation.
1. Can a procedure in the atria affect ventrcles like that?
2. Would previous ablations mean I couldn't get the 5 box?
I understand your plight. I strongly urge you to go to ohioafib.com and follow directions to contact them. Dr. Sarak will call you. The site will also tell you what you need to know about the 5 box. Good luck and keep me informed. Pete
There is a whole website, that you can join at ***@****. The people in this group have all had the 5box and we all keep tabs on how the other is doing. Dr Sirak also participates, yes that's right, the surgeon actually talks to us and offers solutions when appropriate.
Go to the group, you will find objective answers from the curator, Ken,great guy and support from everyone. See you there....
I'm sorry to say the moderators at this site woun't let me send you an address to a forum that would help not only you but has helped many others. Thankfully they didn't catch the address for the Ohio State web site that we all belong to also. Just go there and they can direct you to the other site. There are many open minded people there that can and will support you.
good luck and as I said keep me informed.
Congratulations on your success. It usually takes time, some times months, for the heart to heal - I do not know anything specific about your procedure.
Recovering an old thread/discussion isn't the best way to connect with the people who interacted on that thread. Many of them got what they wanted and don't come back to see what else is being discussed.
Clearly this thread started by "Pete.." has a lot of information and views. Perhaps you'll be able to get direct interaction with one or more of those by sending them a message. You can get to the message facility by "Clicking" on their "handle" on any of the posts made by them.
Hi Pete, my name is David and I had the 5 box maze done on 9/11. unfortunately I'm still having many afib and flutter problems. my doctors keep telling me to be patient and I am, but I'd be lying if I didn't say I expected faster results. I also on 7/11 had the catheter ablation, that unfortunately had no effect . you have no mention of them collapse your lungs to do the surgery, I am 54 and when the afib does hit I struggle with breathing and the ability to walk any distance, but on good days, I get out of the house and take care of things that need to be done.
I'd like to follow your continued progress and speak more down the road to see how your recovery is going.
I have kept indepth details from the first day my afib began on March 21st. Example: Sept. I was in afib for 179 hours. Since my surgery I've been in afib 126 hours. Yes I am waiting as patiently as I can for this thing to take affect.
so let's get together sometime and compare notes, but in the meantime feel good and I hope for your speedy recovery !
David from Naples Florida.
I had the five box surgery in May 2011 and have had no afib since then. My recovery was super-quick and I had no issues. Heart monitoring shows that I have some ectopic beats (PVCs, skipped beats...) but I don't notice them at all. I am thankfully off all meds.
Just to be clear... you had the five box surgery by Dr. Sirak at Ohio State? If you are having problems and experiencing afib, I assume you are being helped by Dr. Sirak. It has only been a few weeks since your surgery. It can take a while for the heart to heal and the inflammation to clear up. Are you on an antiarrhythmic at this time? Were you in NSR when you left the hospital?
Your breathing will improve. I walked a lot after surgery and that seemed to help me. Everyone is different of course.
I hope the afib stops soon... let us know how you are doing.
I'm new to this website. My EP suggested that I consult Dr. Sirek after 2 failed PVA's. My AF is persistent and I'm on amiordarone. I spoke with Dr. Sirek and he sound confident that he can correct my problem. Any thoughts? What should I expect?
My FIBRILLATION was caused by a reaction to anesthesia, after 8 cardiac conversion and 1 failed Ablation in July 11th 2012, I had the 5 box maze done on Sep 11th 2012. Although all my major attacks have gone away, but then I was in FIBRILLATION 24/7 for the next 4 months, they very minor, but I never forgot I was in FIBRILLATION.
I could not take any deep breaths and had pain in my lower ribs (like one was busted). Jan, 2013 I was having a lot of pain in my ribs and went into the emergency room, where they found my left lung was collapsed and my diaphragm had moved up under my ribs (that was the pain I was feeling)
On January 11th,2013 the decided to convert me again and that was successful, my HEART has been insinus and as of today still beating good.
Now I'm dealing with a collapsed lung with minimum chance of recovery...
Has anyone had to deal with a lung problem??? My surgeon stated " he either traumatised, paralyzed or clipped my PHRENIC Nerve. I've done a lot of reading and no one else has had to deal with this, but if you have I'd like to chat sometime! Also dealing with side reactions to drugs...
You have certainly been through a lot. I am glad that you are in sinus rhythm, but very sorry to hear about the collapsed lung and phrenic nerve damage. From what I understood, a couple of years ago (or so) Dr. Sirak modified his surgery to stay away from the phrenic nerve. I am wondering how this happened. Just to verify, you had the five box maze at Ohio State?
I'm interested to learn if anyone has had this procedure done in Florida and if by who? The results as well???
I had the procedure done at Naples Community Hospital, my Thorasic Surgeon was Dr. Pascotto. I know this doctor has not preformed many of this procedure, but they were supposed to fly in a Proctor Surgeon from Utah who has preformed over a 1000 5 Box Maze surgeries and supervisor the 9.5 hour surgery. I never met the Proctor Surgeon (before, during or after) and his name does not appear on any of my paperwork, has anyone ever heard of this practice?
Just to catch you up on my case it appears the surgeon traumatised, paralyzed or clipped the Phrenic Nerve and now I have lost use of my left lung and my diaphragm has moved up under the rib cage (painful yes). Know one can tell me if it will repair it self they just keep asking me to be patient and say lets give it another 3 months.....
The procedure was preformed in Sept. 2012 after 4 months of minor fibrillation 24/7, they cardio converted me on January 11th,2013 and my heart has stayed in sinus, but this lung thing has me for a loss! That's my story in a nut shell.
Thanks so much for clearing this story up for us. John Sirak at Ohio State in Columbus is the only surgeon I know who does the five box surgery. It requires very specialized skill and equipment. I am really surprised that someone offered you a five-box somewhere else. I do not know of a surgeon from Utah who does this surgery.,.. just Ohio.
The surgery shouldn't take 9.5 hours either. Mine was considered long (due to fibrotic tissue) at it was around 5-6 hours.
I do hope that the phrenic nerve heals. I have heard of that happening, although it could take a couple of years. I am so sorry for what you are going through.The five box is a great surgery, but has to be done by the right surgeon.
Can you ask your surgeon for more information? Get the name of the proctor from Utah and maybe we can all help you out with some research on this. You can also ask the surgeon for you surgical report.
Hang in there David... hoping you recover your lung function.
I've been wondering about this business of a proctor when it comes to surgery. Come to find out, it is exactly what the word proctor means... to monitor. A proctor monitors students who are taking an exam. A proctor surgeon monitors the surgeon who is performing the surgery, but does not participate in any way. From what I understand, the proctor does not scrub in. They are there to offer verbal guidance. In David's case, while a proctor may have been in the room, it was Dr. Pascotto who performed the surgery.
This is a good thing to know for any surgery. If the surgeon needs a proctor to be there, we might want to wait until he gains more experience.
David, I am very sorry about what happened to you. I am glad you are in sinus rhythm and I hope your phrenic nerve regenerates. Thank you for sharing your story, and please let us know how you are doing.
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