Thanks to the many informative posters on this forum (they far outweigh the dross writers… if I don’t like the tone/direction of a post I don’t continue reading it👍👌…. Simples… as someone else noted.)
I’m relatively lucky in that my persistent AF isn’t too heavy rock ! On the usual meds and currently sensible BP/HR readings etc …. but I still vastly prefer Sinus and 2 ablations (Cryo and RF) at magic Liverpool Heart and Chest Hospital have given me it back, albeit for just 8 months or so each
I’m being passed onto a new consultant who, by the sounds of it, might do a Vein of Marshall (VOM) , if I’m suitable. Internet research looks positive! Anyone know this (relatively new?) technique? Any info gratefully received. Take care
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I had mine ablated as part of a mini maze as the surgeon found it was large and causing misfiring. It will be a different technique from yours as mine was done from the outside of the heart. To do from the inside involves alcohol I think to kill the nerve but I am less well versed in that technique.
There is a mini maze surgeon Paul Modi at Liverpool.
Thanks for reply. I asked about Mini Maze as it seemed to be getting good results but question got sort of ignored and this technique (VOM) used by a colleague of his seemed preferred by my Cardiologist. Thanks for new name. How you doing? Back in Sinus? How long? Cheers.
awe thanks Jean. Was going to pop up a post at 6 months. Hope you are feeling brighter lovely. Just had COVID myself for the first time although not as bad as you 😘
Buttafly yes it was me. I had it done by the pioneer Dr Miguel Valderrabano in Houston it was done at the DeBakey Cardiology also in Houston all part of Houston Methodist Hospital. I will tell you my flutter was addressed. As far as the rest of it failing I might need to use a different word. It appears that it may have worked but I was not in NSR. I did not have an event when they did the EKG at my follow up that being said it was still like a car was driving on my chest and I had been miserable. My problem was not with the procedure or even what the doctor did as far as the procedure. I ended up having problems because of a staff member he had And I did not get the care I should have following the VOM. Long story I’m not going to repeat it. I will tell you I found a new doctor close to home will be not be as famous but in less than a week he did a cardioversion and I am so blessed I have had HR of normal now for over a week. I went to sleep with 158 which I have been walking around with for months. When I woke up it was 82. It is staying right around 82 although last night for whatever reason it was 70 and I wanted to dance. The fact that a cardioversion put me into rhythm makes me believe the VOM did the trick it just needed an extra push. A staff member at DeBakey caused me to lose what is probably an incredible doctor. I thought so highly of him except he never called or spoke to me and I cannot reach him in anyway because of the fortress of staff around him that is not a good doctor. If you met him you would love him he talks to you not at you but I don’t understand why he never picked up the phone after doing his very own procedure on me the end of April. My doctor in Florida said I gave him at least six reasons to get a new doctor and that I needed to be fixed obviously. That was all I needed to hear because he is a doctor that I will always think highly of. When I left him to move to Texas he told me he was always my person if I need him. That is why I called and the day that I called he was not in the office but I had a call back within 15 minutes and the only message I had left was pretty much my name. He is no fly by night but he cared. He also has a trainee working for him who is trained under Dr. Valderabano for the VOM.
I honestly do not know what happened with me I have been extremely sick and in pain since my procedure. I have been unable to walk but only shuffle and only a few steps at a time because of the severe breathlessness and pain. I was put back on multaq which he took me off of at my followup. According to my doctor here now, that is only good if you are in rhythm it will not put you in a rhythm. Yes I am back on it as of two hours after my cardioversion when I woke up. All I know is how happy I am and how I feel mentally and physically. Yesterday was the best day yet. I have been pretty much housebound but I went out with my cousin and did not overdo it but realized I was able to walk and breathe and feel good.
DeBakey and Houston Methodist are teaching hospitals so turning out others to do the VOM around the US and probably the world. I had a trainee working with the doctor during mine who is going to be leaving soon to take it back to it was either Alabama or Georgia. I think they’re hoping people everywhere will have the opportunity to get this procedure. It is very complex and aggressive. I probably had not mentioned it was done through the carotid, femoral and wrist. There is also a new closure procedure for those areas. I almost picture it like putting a plug-in and eventually it just becomes part of you. No more pressure on the wound until it stops bleeding. It stops while you are still under.
Sorry it’s such a confusion I actually wrote it out better earlier and deleted it by mistake. FYI I cannot say enough good about DeBakey and Houston Methodist and probably my doctor other than lack of human personality to deal with people. If you read about him he was mainly research and maybe should stay there and do procedures but not deal with patients. You can’t cut yourself off from your patience it’s just not right. I don’t know who the horrible staff member was perhaps she’s the child of someone important because the rest of us would never keep a job behaving as she had been to me. Because of her I’ve been walking around with 158 heart rate and at the new doctor and hospital they seemed horrified although did not say much The look on their faces was enough that I had been treated terribly wrong.
if you get the VOM please let us know how you were doing because I am praying you have lots of success with something that may be incredible for people. I was told it could be up to a year complete healing but after that may not even need blood thinners. I am only about halfway through that period. Everyone needs to know whatever procedure you get takes a lot longer to heal than you realize. I learned the word blanking on hair and it seems to be a minimum of three months for a simple ablation. I think those who have use that word because it helps me settle down and not feel like a failure immediately
Hello Dawn. I hope you are well now, as I didn't get the sequence clear. Has the breathlessness gone away after your cardioversion, and are you still at 82 HR?
Could I ask you what and how they do the VOM procedure? Is it done like the catheter ablation to the inside of the atrium via a vein in your groin, or endoscopically to the outside of the heart. I ask because Dr Wolf (of the WMM) at Debakey also ablates the V.O.M when carrying out a thoracoscopic mini-maze procedure. Thanks and good wishes.
EDIT: I just saw your later post and it explains that it is done by an EP and that the "VOM uses alcohol and a balloon instead of burning with cold or heat." Ta, and good wishes.
since the cardioversion I have felt amazing as far as breathing. Oh I still have some breathlessness it’s only been a little over a week now but for the most part what I suffered until that morning is now gone. Yes I am staying around 82. The other night I actually went down to 70 but 82 seems to be the norm at least for now. We went out to dinner the other night and to walk to and from the car without stopping every foot was the best feeling in the world. It was not just the breathlessness it was the heavy pain in my chest at the same time the same as they describe a heart attack. When I get my back operated on and that pain relieved it will be interesting to see how much better I should be. Pain pills do not really touch it so I have no doubt the pain is affecting me also. The pain only started being this bad about six weeks ago. All of the symptoms were immediately after the surgery of the VOM
that’s great that he will also address that because as I mentioned it seems to be an area not given attention enough to. My flutter stopped right away. That never really bothered me very much. I was getting a very hard this that actually hurt when it would hit.
I wish you the best of luck and I know Dr. Wolf is supposed to be amazing from all I have read. The Bakey is incredible and I won’t say my doctor was not good I will say something went wrong and I am angry because he could’ve addressed it And I would not have been suffering for six months. I’ve mentioned before these special doctors are not people person’s usually. I think they need a translator. I’m trying to let go of that because it stresses me and I don’t need that. Instead I am moving forward enjoying how good I feel right now.
please keep us in the loop and let us know how you are doing. Where are you having it done
oh fyi if you did not see how it is done, it was through the groin femoral, carotid and my wrist. I don’t know if they stuck anything down through my mouth lol it was very aggressive the words of my doctor at the time. If they offer you morphine skip it and take one of the pain pills. Morphine does not last very long maybe 15 minutes if that which is why you need to keep taking it such as with a pump. I don’t like the way it made me feel or needing it so much. No wonder people get addicted if it lasts that short of time of course you need more they gave me three choices of meds I don’t remember the name of the one I took but it was pretty good without the bad feelings of morphine. The pain was not excruciating but it was pretty rough however by the next day when I went home I managed on Aleve
Thank you Dawn. I read both your answers. I'm off to Tokyo in exactly 13 days to have the WMM to be done by Dr Ohtsuka who was trained by Dr Wolf.
It's a shame that your patient/Dr relationship ended on a sour note. Even if professionals are unhappy for some reason, they should go the extra mile to support their patients.
Have you thought about writing to Debakey to tell them that the relationship had broken down (maybe without blaming anyone), and to ask for their help to re-establish the communication?
I do not wish to reestablish. A doctor should know what’s going on with his people. He was supposed to do a cardioversion Labor Day weekend and I had to cancel because of the person working for him so many things that she did wrong it’s too much to list. I put a call into my doctor in Florida and even though not in the office he called me 15 minutes later after leaving him a year ago. He said I gave him at least six reasons to find a new doctor. I found a great doctor here 15 minutes from my house as is the hospital Which I found out is really a great little place. It may not be big and famous but they care and he has quite the background himself. I saw him on a Monday by that Friday he had done an echo and cardioversion and here I am now with NSR
It's better for you to put it behind you and to start afresh with the new doctor, who seems to be the real deal. Dr Valderrabano seems to have done a good job ablating the VOM and you are back in NSR. That's all that counts. Be well.
I will know more next week as far as what else they may have found in the echo but yes something does seem to have gone right with it for me to be in NSR. It has all turned out well because I really hated having to travel to Houston. This is the first time I have lived a distance from a major city so it’s all new here to me even after a year thank you for the support. Life is too short to dwell on things you can’t change
thank you so do I. I had some nightmares late this morning and my heart rate went up to 98 I believe I fell asleep on my back which is why I need to see the sleep apnea doctor Monday. I’m so afraid of setting myself back. We have to do it we are told on our end to help ourselves the best we can. I look forward to seeing your post
During my ablation 12 years ago, my EP did the usual pulmonary veins and then did further work including the vein of marshall. I was well on the way to becoming persistent, so I think the arrhythmia had spread to this vein which increased the overall burden. The ablation was not a problem, both the PVs and vein and one or two other bits were done in the one ablation. I've been in sinus rhythm 99% of the time since.
Your doctor must’ve been ahead of his time because this procedure is only a couple of years old as far as being accepted that is amazing that somehow he knew and worked on that area. I am so thrilled with the outcome you have had. Age seems to also have something to do with it and the younger you are the better chance you have of success. I believe I was either the oldest or one of the oldest I had just turned 70 a few months after it. Congratulations again you make me smile knowing how successful yours was. Who is your doctor? My doctor originally was from Spain perhaps they worked together at some point in research because that is a major area for Dr. Valderabbano. At least we know they are still working on things to try to find a cure or at least a long lasting fix
I had the VOM the end of April. It May have been my post. I had it done around the same time that mummy Luv Had her mini maze. Unfortunately whatever has gone wrong with me has been terrible. I will say I’m not quite sure what it was. I have not had another ablation but I did have a cardioversion last week and I’m so excited to say more than a week now and I am holding steady with heart rate in the 80s compared to 158 that I have been constant with for months. I know that doesn’t sound right to people but it’s a long story with problems with my EP. I start it with a new doctor and in less than a week he had me with a cardioversion and success. Perhaps that means the VOM was mostly successful but my heart was not in rhythm and was not addressed I had been kept on mole tack which according to my new doctor is only to keep you in rhythm but will not put you there. obviously there were issues with my other doctor. The sad thing is he is the pioneer of the VOM.
I believe I was the oldest if not one of the oldest to get it done and that may play a part. I just turned 70. I wish I could tell you positive things I don’t know anyone else that had this done. Just because something went wrong with me doesn’t mean it’s a bad procedure because yes look up Miguel Valderrabano. Houston Methodist DeBakey cardiology in Houston Texas. He was my doctor and that is where I had things done. I can’t say enough about the hospital and everything else. I had issues with one of his staff so sadly he seems to have abandoned me. That doesn’t make him bad at what he does but in my eyes it makes him a bad person because he never spoke to me he seem to only listen to her. She was not a nurse etc. but a medical secretary so you can see the issue.
he is a demigod to the EP community you most likely have one of his trainees. During my surgery we had one I think he was from Georgia or Alabama. They are trying to train them to help more people. It seems like I just had a bad run of luck with him don’t blame the procedure but I don’t know your age so question that. The first week I felt terrific then I realized I just had lots of meds in me. After that I was walking with all of the symptoms of heart attack 24 seven and I use the term walking lightly because I could barely walk but shuffle and was in pain.
I am not sour grapes about the procedure JAMA and others cannot all be wrong. Funny thing is if you met the doctor you would not believe that I had the issues I had because he talks to you not at you and he’s really a great person so I wish I could tell you what happened but don’t be afraid of the VOM
from what I understand it is the part of the heart that is really looked at for a fib because of its location. The VOM uses alcohol and a balloon instead of burning with cold or heat. I’m glad you read about it it’s really fascinating
Best of luck. Last night my heart rate was down to 70. As I said I’m starting to rethink the actual VOM that maybe it was a success I just wasn’t NSR. If things had not gone ugly on a personal level I might’ve been better almost immediately. I was due to have a cardioversion Labor Day weekend unfortunately that’s when things went bad with his staff member who needs to be fired. She did not even let him know it had been postponed and the hospital called me 9 o’clock the night before and had to notify him that is a sample of his worker that I had issues with. Imagine him showing up with no patient there. I have total lack of use for people like her.
sorry for the novel you really had to be with me since the end of April to see why it was so confusing and turned out so wrong. The only good thing is I have a great doctor now only 15 minutes from my house and a great little hospital. It’s not big and fancy his name isn’t in books but he listened and in less than a week I have relief. To go to Houston was a 2 to 3 hour commute and I often worried about in an emergency because of the specialized procedure. The hospital I was afraid of LOL has turned out to be a blessing and now I can relax more at home knowing health is not that far away
Best of luck remember I don’t think my VOM failed something went wrong but that’s not failure. Take care of yourself
good to hear you are in sinus rhythm now Dawn, maybe as you say, this was the right treatment and will be successful despite your experience. Got everything crossed for you 🤞🤞
thank you so much. I wouldn’t wish this experience on anyone. As you know, it has been a long 6 months. I am very happy that it opened me to trying a doctor closer to home and the hospital. I feel such relief knowing that if I need them they are only 15 minutes away instead of 2 to 3 hours. As they say things happen for a reason. I’m so tickled that you are doing so well 😊🤗
I found this on the Internet (more in the article):
"In 2009, Valderrabano et al. performed vein of Marshall (VOM) ethanol ablation in canines demonstrating local ablation, regional denervation effects, and decrease in effective refractory period [6]. In 2012, the same group demonstrated the VOM consistently lied in the reentrant circuit of perimitral flutter demonstrated by entrainment [7]. In the VENUS trial, Valderrabano et al. enrolled patients with persistent AF undergoing their first catheter ablation procedure to radiofrequency ablation alone (pulmonary vein isolation plus additional lesions per treating physician’s discretion) compared to radiofrequency ablation and VOM ethanol ablation. The freedom from AF/AT was 49% in the ablation+VOM group and 38% in the ablation-only group (p = 0.04) [8]. Derval et al. followed 75 consecutive persistent AF patients with VOM ethanol ablation, pulmonary vein isolation, mitral line, roof line, and caval-tricuspid valve ablation. In this cohort, 72% were free from arrhythmia at 12 months [9].
Over the last decade, surgical ablations have become the gold standard for any drug treatment for recurrences of atrial fibrillation and quality of life. However, the current standard of care for persistent atrial fibrillation (AF) using catheter ablation has limitations [1]. Except for the strategic procedure of pulmonary vein isolation, expanding lesion sets to include linear lesions or ablate areas of irregular electrical activity has been inconsistent in improving outcomes [2]. Furthermore, recurrent AF and atrial tachycardias lead to repeat ablation procedures. One emerging technique, ethanol ablation of the vein of Marshall (VOM), provides an effective strategy to treat patients with AF.
The VOM, an embryological remnant of the left superior vena cava, has been suggested as a source of AF incitement because of parasympathetic and sympathetic innervation that affects the electrophysiology of atrial tissue [3]. In addition, VOM is located within the mitral isthmus, which is important for perimitral atrial tachycardia. As a result, ablation by retrograde ethanol infusion is a possible technique to eliminate AF triggers and VOM innervation [4]."
Good sleuthing! Thanks. It’s always tricky as a non medical person to assess things but looks worthwhile. Guess as it’s pretty new info is more limited. I’ve an appointment coming up next week so will ask more questions and see if I can get myself better informed.
Hi, quick update. Just had a CT scan (with dye injected) arranged by my specialist to presumably check out the area for my upcoming Vein of Marshall ablation. No feedback yet. CV early January and date of Vom ablation not yet arranged, but fairly soon expected
I’ve just bought an Aktiia blood pressure bracelet to keep an eye on BP 24/7. So far so good… readings seem similar to my manual cuff machine when checked. . Bit irritating it only automatically takes readings and discards results if you’re active with no current ability to force it to do a reading. But been reassuring to see decent sleeping readings. Love my toys
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