Lynne's Journal

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.