Lynne's Journal

So some new updates to this long 6 month nightmare! I saw the cardiovascular surgeon on April 2,2026 to try and find out what is causing all the burning, stinging, and throbbing pain around the pacemaker area as well as now a full frozen shoulder. It turns out the frozen shoulder is from the pacemaker area and he thinks it might be from a mild infection in the pocket. They were going to do a pocket swab and pocket revision on May 6th which just past, but on May 5th they called to say the team had re-reviewed my chart and decided to do the surgery in the OR rather than the cath lab on May 15th. The nurse didn't know  why. I'm starting to think I want this pacemaker out of me and a leadless one put in. Everything has a sequence of events that needs to be done. They need to find first what is causing this increased pain and dysfunction, is there a minor infection floating around and then decide the best way to correct it. Even if it is a minor infection the whole thing needs to come out and go onto the other side, but that also poses a problem. If anyone has followed my story they will know I had my bicuspid valve replaced in 2015 with the pectoral muscle detached from the the sternum bunching up around the armpit. It caused a compromised upper body and I wasn't pleased about it, but the following year I accidently gave myself a lung hernia. This required a hernia patch to be placed inside the chest cavity. Since the pectoral muscle was still bunched up I asked them to reattach the muscle to the sternum, which they did but it left the muscle with a split between the sections. At least out of some bad came some good too. Now this muscle likes to cramp like a Charlie horse cramp which as you can imagine can be very painful. I can't stretch it out like a normal cramp so I use the back of my knuckles to push and massage out the cramp. So this area is a "no go area" as I can push on the pacemaker to push on the muscle below.
So this leaves two options - either the abdomen or a leadless one. I'm not keen on the abdomen at all and I don't know yet if I'm a candidate for a leadless one. They won't put it back in the left side so basically the chest is off limits now. I'll ask on May 15 about a leadless one.
Besides having an increase in palpitations that are very disconcerting and uncomfortable. They say they are not dangerous but the increasing amount affects my quality of life for sure. I feel from a patients perspective that it is all connected to the pacemaker issues and I hope they get it figured because this is one unhappy heart at the moment!

Well I was just thinking of giving an update and ask maybe if any others have had some pacemaker problems.

 It will be coming up six months now and I’m starting a second part of cardiac rehab for 4 months. I did 1 month with the facility I transferred to after my surgery for 11 days. It was their outpatient falls prevention program. I was not your typical senior person that goes into this program but what they wanted do with me was improve my lower leg strength by doing an intensive 4 weeks program. They worked me hard for sure, and at the end of my time the Pt/ OT said I don’t have any more challenging tasks for you to do. I was doing balance things I thought I would never be able to do, with eyes closed too! So the next rehab  will be your traditional rehab for most centres that offer these types of programs after heart surgery. Lots of walking, cardio machines etc.

Now, part of my problem is dealing with the pacemaker that was implanted on Sept 19,2025. Since then the area around the PM along the chest to the armpit and down the underside to my elbow. I have been having wicked pain that has progressively gotten worse since Oct 25,2025. I noticed when I was walking and a normal arm swing the arm started to hurt causing me to stop swinging it and rest it in my coat pocket.
It sort of helped then on Nov 12 the pain changed again to involve the arm all the time and not just swinging when walking but even at rest, like now.

I was having my first Device clinic as it is called on Nov 27, 2025 and went to tell the Dr. what was happening. This doctor must have been having one hell of a bad day or this was his normal demeanour. He opened the door, looked at me never said a word, never blink to knowledge me or nod, nothing. Someone in the hall spoke to him and he said something to the EP tech and then walk over to the computer and sat. I was sitting on the exam table at this time. 

Even though the Ep Tech versified who I was I never actually got to see the surgeon well enough to know what he looked like from ICU. It was always the fellows and nurses doing everything. He was behind and off to my left during the surgery and never saw him without a cap and mask. I actually thought the guy was taller. So when he came into the room that day I wasn’t sure if he was the doctor. He said never said who he was to me but I kinda knew.
 
It was a good thing I asked the EP tech all the questions and he answered to the best of his knowledge but said “we should ask these 3 questions on my list to the doctor”. He explained more than the doctor did to understanding what I was experiencing, otherwise I would have come out there with no understanding. 

Eventually the doctor turned and said in a very gruff voice “how are you”. No pleasantries what so ever. I could see the Ep tech look at me and I’m thinking what the hell is going on here.  So I started to say “ I’ve been having pain” and that was it. I never got the question out when he interjects “ saying everyone has pain, some more than others and for longer”. Good but it wasn’t my question to him. Then he says “ show me the incision” equal as gruff. Which was fine. The EP tech he was 100% wonderful compared the asshole of a doctor. He actually took care and politely asked if he could check the incision and listened to the heart beats and felt for the arrhythmias. The doctor did none of this himself. 

So the doctor then says “any other questions”  and I said yes “ why if I’m on Bisoprolol “ but that’s again far as I got. He just said “ speak to your cardiologist”. Now the EP and I are seriously making eye contact and wondering what is going on here. He tried to say something and he was cut off, and I thought to myself “that’s it, I’m done with this doctor. The Ep went to tell him about the arrhythmia I’m having but he didn’t want to hear about and I mouthed to the EP tech”forget about it”. This doctor had his back to me again during all these questions. By this time I turned my head and looked out the window and never said another word. The doctor stood said”come back in six months” and went out the door. No good bye, nothing. 

I may be small in stature but nobody f’s with me like that. The Ep tech stayed behind and we talked for another five- ten minutes. He doesn’t know what happened that day. Needless to say I phoned and told them exactly just took place and told them, I will not see that person again. He doesn’t respect the title of doctor after that espisode and I told them that. They were very surprised because they said “he is usually so nice to everyone”. I said”not today people”. It is in my chart to not see this person again.

When I came out of the office and to the waiting room where my sister was, it jam packed with people. The same person that I was to book my appointment with in 6 months had just come out to everyone in the waiting room and said they had some delays and they were a bit backed up. That was an understatement! 
 So something seriously happened that day with this doctor and he wasn’t happy so I think he took it out on the patients next in line and I got it since it was an early appointment that day. 

The clinic nurse who I called to complain about the episode said to call back if there is a problem. So today I made that call. I have been having progressive increase in pain and disfunction with the left shoulder and arm. It has become an on/off again frozen shoulder but goes down into the bicep muscle in my arm. It has been causing me to have muscle weakness, sharp shooting pains in different areas in the arm and shoulder. Some almost feel like electric shocks. I’m having a great deal of difficulty with my activities of daily living, coats hurt to put on, seatbelts are a nightmare if I have to do it more than once. I cannot sleep on my left side since September which is my preferred sleeping side which has caused very fractured and shorter sleep. Very little deep sleep because pain keeps me awake. 

What my PT and OT therapists are thinking is that the sutures to hold this in place has been placed wrong on the muscles in the chest and is pulling on the muscles and tendons so it is restricting the extension of my arm out to the side. I’m beginning to understand more how this could have happened if he didn’t have the arm fully extended when he put in the suture which won’t allow it to be extended now, and every time I do the pain gets worse. 

To add to that I also started to have increases in palpitations, a lot of them. This could be because of the increase in pain and lack of sleep. My Fitbit also picked up an A fib arrhythmia which was picked up during the episode. Usually Fitbit gives the reading after it has been picked up. So because I was having sweating,nausea, clamy, not feeling well and a bit lightheaded I took my BP which was all over the map so I next did a ECG on Fitbit and it picked it up as it was happening. I also happened to have a holster monitor on because I saw my cardiologist on Jan 14 for my new baseline echocardiogram going forward. I mentioned about the palpitations increasing so we put one on for 7 days. The results showed no A fib but there were two areas that had what they called a couplet and numerous PAC’s and PVC’s. Apparently it is the couplets that are a concern for A fib. I also learned that there are four ways to put in the wires to heart muscle and the one that is most commonly used and the easiest for the surgeon or even inexperienced doctors can put this in: the atrial right appendage, right atrial free lateral wall, interatrial septum low, interatrial septum high, interatrial septum, Bachman Bundle, right atrial multisite, bilateral coronary sinus + right atrial. I came across this paper on it published June 18, 2024, Frontiers in cardiovascular medicine, Pacemaker-induced atrial fibrillation reconsidered- associations with different pacing sites and approaches. These were never mentioned when they tell you about pacemakers. The only thing was how they put them in, why they put them in and other precautions. No mentions about the placement in your future. The article gives the pros and cons about each placement area. I would have wanted to know more about the Bachman Bundle area because this one may be more challenging to do but gives no A fib future problems. I would have done differently if I had know. I will ask them this when I seen someone as to why these areas are never discussed. 

My question to anyone that has a pacemaker did you have problems with shoulder pain and muscle problems in the bicep muscle? I have a small tear in this shoulder and early on we were thinking of doing and injection but as this progressed I began to think this is not the tears causing  this but the PM. I said the to my FD today that I think we should wait on the injection till the PM is sorted out because these shots do not always work and I didn’t want to waste it, when it could be need later down the road. He agreed with as well. 
I have a fair amount of medical knowledge from working at Holland Bloorview Kid’s Rehabilitation Hospital as their medical intake coordinator so I needed to know my medical terminology but pacemakers are out of my league but I’m learning to understand them better. 
This little warrior is wearing out quickly and I hope soon they figure it out because it is destroying my quality of life and getting in the way of recovery. 

So that’s the update till I see someone hopefully in a few weeks. It sounds like the clinic nurse is having me see a surgeon so it might a bit longer. So keep all your love coming ❤️💪 and I hope it is a simple fix. Lynne

Well, I had the surgery to redo my bicuspid aorta valve that t was originally replaced in 2015 on Sept 17, 2025. It turns out the aortic valve was not the only problem. When they opened me up the aorta itself was full of calcium overgrowth that was destroying the aorta. They replaced the valve again, as well as the aorta with a graft and enlarged the annulus of the valve with pericardium patch to allow a future valve in valve. Turns out though that I went into cardiac arrest twice and they had to do cardiac hand massage of my heart as well to keep me alive. I was on the heart and lung machine twice and they didn't think I was going to survive this surgery. The surgery was from 2pm till 10:30pm. I was in critical care and in intensive care for 3 days. When I opened my eyes about 9- 1/2 hours after surgery and looked around I was then taken off the ventilator. They had a bunch of simple questions as to place, what I had done, where I was, did I know the date etc. So I survived with my brain intact and my organs all working. So I ended up with 4 implants including a pacemaker for half the heart with 2 wires, the other half worked ok. I went from CVICU to the wards and then to rehab for a total of 22 days. I came home on Oct 7, 2025. I still feel very sore with all the extra stuff and work done but slowly starting to feel a bit better every few days.

Well I just had a very short notice of today telling me they will do my surgery on Wed. Sept 17, 2025 to redo a failing aortic valve. They admit me tomorrow. So I've been scrambling to get the last minutes things done. I have been having increasing symptoms the past 5 days or so and I guess they decided it's time. So I'm hoping all goes well as this one is full sternotomy which I was trying to prevent, but it didn't work out. There is too much to repair through a mini thoracotomy like the first surgery.

Since meeting with the surgeon on July 16, 2025 she wanted me to increase my weight and have managed to reach 105. This past long weekend I noticed as I was doing daily activities and cleaning up the house etc. I was having far more chest tightness and now shortness of breath which I hadn’t had. Usually it was on exertion but now I’ve had some moments at night trying to fall asleep that I was getting chest tightness. So things are becoming more symptomatic. My walking has slowed to a crawl and mostly up and down my driveway. I’m still able to do my exercises they gave me but noticed a change there too. So last night I sent an email off to my surgeon letting her known that things are changing. So we’ll see what happens next. 

One thing she mentioned was a root enlargement to accommodate a big valve for future valve in valve TAVR. I’m sure someone in our heart community had this done. What did they do for you? Was there a special name given to the procedure? I’m just curious and will ask her again the details. Sometimes you need to digest and reread what you first heard which is what I’ve been doing. 

That’s the update for the moment. 

So some of my questions to our Heart Value community is this. With the sternum wires have others been told that they may have to come out in the future because you are petite and not much fat/muscle that it will probably irritate the skin? 
How did you manage to sleep- in your own bed or a recliner?
When I look at different videos they all seem to show your average person size which I’m not (4’11”).  My bed currently comes up to the top of the hip bone so my feet won’t touch the floor when I sit on the side of the bed. Have others had this and would a raised platform help? Thanks

Coming up August 11, 2025 should have been a special day for my 10 biscupid valve surgery done as a mini thoracotomy but it won’t be. My bioprosthetic aorta valve has failed. I’m current on the wait list again to get it replaced as a redo aorta surgery and this time it will have to be the dreaded full sternotomy and not the mini. Because of the Perceval stentless valve that was used the first which is smushed into the heart muscle it needed to be explanted and then the aorta and heart area reconstructed and the new valve installed. It is a long 6 1/2 hours with lots of blood so they will probably have a transfusion or 2. They do recycle your own blood as well. This doctor is Head of Cardiac Surgery at Toronto General Hospital named Dr. Maral Ouzounian. She has an excellent reputation as a cardiac surgeon and does a lot with connective tissue issues involving biscupid valve patients because they can have these aneurysms etc. She didn’t recommend doing it as a mini because it is too complex as a surgery to do safely in a small 4cm hole. Too many extra complications could arise. As to the date that isn’t known yet because I’m dealing with another health issue the past 2 years of blood sugar and weight loss that I can’t regain unless I eat junk food, something I don’t eat. I’m not even a pasta, bread or potato person, 🤪🤪

The Valve is bad enough that I could have surgery tomorrow but I need to put on 17 lbs. I started out in 2023 without knowing I high blood sugar problems but I also was sick with RSV at the time. What I know now and not then was that you shouldn’t test glucose levels when you are sick, they will be elevated. They were, and one week later for the OTTG test they were still elevated as I was still at the end of RSV? So the FD said to eat low carbs and exercise and we’ll check back in a month. I reminded him of joint problems and will do my best. I’m petite at under five feet and never weighed more than 120 lbs. In 2023 I was 117 heavier than I like and was going to take off 5 lbs. 
So I picked a number of 30 not knowing because I never had to know and lost a lot of weight too quickly and was making myself ill at the same time. Of course, the FD was away on March break for 2 weeks and I ended up calling diabetes Canada and asked for help. They sent me to the pharmacy and gave me a glucose monitor to use over the next five then see the FD when he gets back. 
So whatever happened that day for low carbs switched something off and no matter what I did the weight would not return. So up until July 16 my lowest weight was 93lbs. of muscle and skin. HA! 

So the surgeon said we need you to get to 110lbs. because you will loose weight during surgery and your too thin. She said the arteries have no CAD or arteriosclerosis it is only the valve damaged, so go and pig out on junk food, steak and potatoes , fats, ice cream, chips, hamburger, all the bad things we tell not to eat you need to eat. So, I literally took it to heart and have been having a junk fest for weeks now. My poor body doesn’t know what hit it. You fell so bloated because they want to eat just about 24/7. So I’ve gone from 93 to 100lbs, 10 more to go before Oct. This is when they are planning it, maybe end of September. 

I need to speak with them and see where we are going next here if I get there faster that Oct. I’ll keep you posted and I have questions for the community but need to make my list first. Stay turned community of lovely Heart People.!❤️❤️❤️❤️❤️❤️❤️

Thank you Adam. Happy 15th Anniversary! You provided the space to find reliable heart information from the people that have experienced it. This has always been helpful for me. 👏👏👏🤗🥂

Didn’t get a chance to post on the actual day of surgery which was Aug 11, 2015. So 4 year anniversary for me. Heart wise I feel ok. Still have pectoral muscle cramping from the mini thoracotomy and I guess I always will now. It is less but all depends on what I’m doing. Found out by chance from a neck strain and headaches that I have had a stroke sometime between 2015 and 2018. Had a few CT scans showing that I have 2 discs in the neck that are degenerating which was exasperated from the the neck strain. The CT scan showed something so they repeated in 1 Year and still showing something so they did the MRI May 3rd and they confirmed it was a corona radiata infarct or a silent stroke. As I write this the news on TV was talking about silent stokes. I’ll have to go back a re listen to it. Have a CT angiogram next to see what is blocked or damage. No symptoms that I’m aware of. So we’ll see where this goes. You know you just start getting back to feeling better then something else starts. Getting old sucks!

Didn’t get a chance to post on the actual day of surgery which was Aug 11, 2015. So 4 year anniversary for me. Heart wise I feel ok. Still have pectoral muscle cramping from the mini thoracotomy and I guess I always will now. It is less but all depends on what I’m doing. Found out by chance from a neck strain and headaches that I have had a stroke sometime between 2015 and 2018. Had a few CT scans showing that I have 2 discs in the neck that are degenerating which was exasperated from the the neck strain. The CT scan showed something so they repeated in 1 Year and still showing something so they did the MRI May 3rd and they confirmed it was a corona radiata infarct or a silent stroke. As I write this the news on TV was talking about silent stokes. I’ll have to go back a re listen to it. Have a CT angiogram next to see what is blocked or damage. No symptoms that I’m aware of. So we’ll see where this goes. You know you just start getting back to feeling better then something else starts. Getting old sucks!

Well it has been 8 months now since I had to have my lung hernia repaired. I can say I'm not thrilled with the progress or lack there of. I have been having almost daily muscles spasms or severe cramping of the pectoral muscle on the right side. The area of the incision is basically skin and bone with the muscle split in a V on either side. The muscle spasms below and above the incision. It can be very severe at times and even brings tears to your eyes if cramping badly. Family doctor hasn't any idea want to do so I'll have to go back or at least let the surgeon know what's happening. I have been giving it time to heal and just doing daily living activities. I was planning on taking the heart rehab program again but the muscle is not able to stand up to even light weights never mind the full program. Very discouraging.

Hi All, Received some disappointing news yesterday. I had a right mini-thoracotomy done Aug 15, 2015. On Aug 30, 2016 I noticed as I was looking in a mirror and coughed at the same time a huge bulge come out between the rib bones and it was above the original incision. Of course, it's our Labour Day weekend and all my doctors were away. Anyway, I connected with my cardiologist and saw him on Tuesday Sep 13th. I had described in detail to his secretary what was happening. The Dr. had a pretty good idea what had happened. He said to me that somehow the internal stitches have giving way and created a hernia between the two ribs and when I coughed it pushed a bit of the lung tissue out. he said it is very,very, but does happen and is familiar with it. I don't have really any pain which I'm thankful for but do find I'm achy at the end of the day from talking, coughing, laughing etc. Anything that makes the lung expand outward. He is a bit concerned with adhesions like I am and hope none are forming or have formed. I hope to be in within the next 2 months. Till then I'll place my hand over the area with pressure to help keep it inside. Never a dull moment with me. HA!!!

Just over four months now from my mini-thoracotomy for a aortic valve replacement from Aug 11th. Feeling great. Started my cardiac rehab on Dec 2 for a 6 month course. Like Gary Stripling, I'm having this pulsatile tinnitus and hear the heart beating with a little ring at the end. It can be annoying, but it's not all the time. As I type this it's doing it but only the last hour or so. Who knows.

If anyone had a mini-thoracotomy done for their bicuspid aorta valve did you have right thigh numbness and localized swelling in the area from the by-pass tubing? If so, how long before it goes away or does it not go away completely? I have been having this since day 1 with very little change in the feeling. The thigh area bothers me more than the heart incision does. Lynne

Finally had my severe bicuspid aorta valve replaced on Aug 11, 2015 in London, Ontario,Canada (University of Western Ontario) It appears from the group of people being done that I later met in the halls walking all had the traditional open heart surgery. I was the only one that mini thoracotomy AVR done, also using a paravertebral nerve block. Even though it took a bit longer doing the nerve block I would use it again if offered. The worst part for me the chest tube. I'm small woman and really felt the tube the till they took it out. That created a muscle spasm which still has not gone away yet. I have been having a bit of fluid retention 1-2 lbs. when I last weighed. I noticed today all the aches and pains of the surgery are making themselves known. Each day should get better and the muscle release soon. I'm too sore to be massaged just yet, but soon. Happy to say I Survived!!

Disappointing news. They have postponed the surgery for possibly the following week. I will know more on July 23rd if it will be the week of July 27th and what day. It has been a very trying experience with so many cancellations that is no wonder I haven't become one of the emergencies or something else. Thanks for the wishes regardless, they help encourage me on. Lynne

Hi All, Thanks to everyone for the well wishes. It really does make a difference to the emotions. The Hospital called as a heads up yesterday at 3:30 that an emergency had come in and they were waiting on a decision from the family. The hospital called this morning at 10:45 to cancel. the next date tossed out might be July 17th. This really has been a nightmare with 3 cancellations now. Supposedly, with 3 bumps the next one is for sure (nothing is for sure with hospitals) so I don't know if they will bump someone else to put me in earlier. I did mention that i'm having a bit more increase in symptoms now and didn't mention before because I expected I would be in this time around. I'm trying to be strong but it sure knocks the wind out of your sails. Anyways, that's my update. Lynne

I finally got a date for surgery on June 18th. I was cancelled for May 20th so I hope this one stays. It has been a very long wait time for me with added stress from the wait and the cancellations. I'm having it done in London, Ontario which is out of town for us. I had made reservations to stay at Amica for post-op surgery and they cancelled on me 2 days ago. Now, I had to scramble to find another place to stay when I'm discharged. I have to stay in London for a few days before coming home to make sure the heart is ok. Finally arranged everything today and I'm mentally worn out never mind physically worn out too. I was planning on taking it easy this week but it sure didn't work out that way, so hopefully this weekend I can just relax!

Had my pre-op on Dec 29th. Because of all the confusion dealing with Fibromyalgia flares after surgery, (since surgery was my trigger) I was not convinced that the surgeon really understood where I was coming from. He was meeting with another patient near pre-op area and was asked to see me before he went to surgery. I think he was not in the greatest of moods with me about the FM but if I don't speak up now no one else will. Anyway, I was asking him if it is possible for him to do the surgery once time and not have to worry about replacing the valve for at least 10-15 years. By then there will probably be another way to do replace the valve. I mentioned that I had seen it done as a minimally invasive thoracotomy surgery by cutting 2 ribs and removing the aorta and valve or as a mini-sternotomy. He was a bit snarky and said that in Canada we call it a hemisternotomy and if thats what you want you could have done it in Toronto. (I live in Toronto and I'm going to London, Ont because of his experience in minimally invasive surgery) I was taken back by this and I'm usually quick with a response, but not this time.He also said we don't do that kind of surgery in Canada yet. He said the diameter in normal range of 36mm (last Nov 28th he said 34.29mm looking at the CT scan and his fellow said 40mm) So somewhere between 34.29 to 40mm is my range - normal/ above normal. He mentioned a word "remotely" in saying that the aorta is within normal range and that it will remotely if at all become involved and to not worry about it. He feels the replacement will reduce the wall stress and lessens the aorta problems. Of course he has no crystal ball nor do I in regards to either FM or the aorta. So, after much pros and cons with my sister over the day I finally decided to have the mini-thoracotomy to replace the BAV. Now, I still have some unanswered questions which I'll ask the RN Pre-op nurse assigned to me. As to when this will be done, I play the waiting game, with one twist thrown in - my surgeon has his holidays for 3 weeks, the last 2 of Feb and 1st week of March, then we have reading week, March break. So about 5 weeks of no surgery time for those ahead of me as well. A slim window of the 1st 2 weeks of Feb. Who Knows. I wait.

Had the tests and met the surgeon on Nov 26th. The CT scan unfortunately showed that the aorta root is now involved. I had asked at every echo if the aorta was ever enlarged or involved and they always said no, so I was bit overwhelmed when the doctor said it is starting to enlarge. The bicuspid aorta valve needs replacement very soon but the aorta is not yet at the size they start removing it. So, all my planning to have no open heart surgery have gone out the window. They will follow me very closely till it reaches their measurements then book the surgery. He said they don't know how many years it may take to enlarge 2,5 ,10 yrs and sometimes the aorta stabilizes and may not be replaced. So the plan is to replace the bad valve 1st through a mini thoracotomy sometime in Jan or Feb 2015 then wait and watch till it's time for the second surgery. I have my pre-op Dec 29th. I'm still getting my head around this new unexpected news then I'll try to put it out of my mind till it's time to replace it.

Writing my lists of questions for the BIG appointment on Nov 26th. I have a CT scan, another echo and the meet the surgeon all on the same day as I'm going to London, Ont. for my surgery. I think that's the plan so far. With all the bad weather and traffic I'll leaving Toronto early and staying over night. Too far to drive in the morning for a 7:40 appointment. I don't want to get up at 4 or 5 am to drive so early, I'd rather arrive the day before and scout things out.

Hey Everyone, Had a trying time with my angiogram with bleeding 3 times the afternoon and night. I was a little nervous about sleeping so I used a tensor bandage loose enough to hold some pressure pads in place. Worked well. The bandage stuck to the the cut and of course can off with the bandage, more bleeding but just the skin edges. I used some steri-strips to close the cut and keeps the edges tight together to heal. Bruising was terrible. I had a 6" X 5" bruise that even went along the crease of the leg. After enquiries about what others have experienced, most had no problems but some worse than me. So I guess it all depends on where and with whom it is done by. Too bad they don't have a rating system in place so you can see who has complications. The important thing is that I have no blockages or enlarged aorta just the BAV. So the next step as you all know is waiting for the surgery time but 1st comes the visit with the surgery. I called today but haven't heard back from them. And to you, Robert, thanks for enquiring after me. I'm still hanging in. I'm trying to keep my daily living as status quo because I would like to keep by body as fit as possible without any heart overload. How are you doing? Lynne

Have a question for the Heart Valve family. Does anyone have fibromyalgia with their biscuspid aorta valve? What if any, problems have you encounter with surgery or recovery over the many months?

I received the call to book my angiogram and it will be next Wed. Sept 24, 2014. I didn't realize the angiogram would be a whole day affair and the recovery time is 4-5 hours with the actual procedure is only 45 minutes long. I have to arrive at 6:15AM. What a time! Not use to such an early hour anymore. Things are moving along.

I have started to notice a change in the beating of my heart now and sometimes a shortness of breath going up inclines and stairs to second levels in August. Called the Cardiologist and of course whenever you need them they're away on holidays. Anyways, I saw her on Sept 9th and she has started the referral to my surgeon. Because of my fibromyalgia we have chosen to do a minimally invasive robotic surgery to lessen the pain from open chest surgery. I'm hoping that this works and I don't have a severe relapse with the FM. So, now we play a bit of a waiting game with our health care system in Canada. I'm sort of calm at the moment and want it over with but at the same time I know I will get more anxious as time gets closer to the date, which hasn't been set yet. 1st is the angiogram, then to meet and go over what he'll be doing and how, then setting the surgery date. Time frame I don't know at the moment,but if I get worse they move you along quicker. So for now I wait.

Still playing the waiting game. I see the cardiologist in May for another 6 month followup. I will be having a repeat modified stress test and echo. Still not showing any classic symptoms they are waiting for but after reading about the new guidelines on this site I will be asking my doctor about them. Not sure how close Canada follows the same guidelines. If they do, then I may be in the category to consider surgery.

Saw cardiologist yesterday Oct 1 and since I still don\'t have the classic symptoms showing, she would like to do a modified stress test to see where the heart is at. She feels the arteries are clear but will think about an angiogram to be sure then make a referral to speak with the surgery and get into the system. So the wait continues for me.

Saw the cardiologist on March 20th and read a copy of my report and tests. It appears that there is mild left ventricular hypertrophy which is new since the last check-up In Sept.2012. I guess on the next visit if there is further change then the valve will need to be seriously considered. I still have no symptoms showing.

I got mixed up with my appointment day and saw the cardiologist today not tomorrow. They did a another echo and the change in the gradient is 81 from 80. This is the 1st time in 13 years that the gradient has not moved about 6 points. The Dr. feels even though the aortic diameter is now .5 from.7 she feels it still is about the same as 6 months ago when you consider all the test results. But the palpitations she wants to check out further with the holter monitor for 48 hours. She also gave me a different Doctors name in London Ontario that does very minimal invasive surgery with much shorter recovery time and length of stay in hospital. He does a very small incision sideways over the centre/right chest area. Sounds interesting to find out more. I really was expecting worse news so this is good for now.