Post septum myectomy

Posted by angiev18 @angiev18, Sep 24 10:31am

Hi. Just wondering how those who have had septum myectomy feel 9 weeks post op? Still have any symptoms like before surgery gor HOCM? Had surgery in July at Rochester, MN. Just curious to how others felt 9 weeks out and beyond. Thanks in advance.

Hello. I am glad to share my experience. I had septal myectomy surgery at the end of last February at Cleveland Clinic. I am an active 70 year old woman in good health otherwise. I did not have the same symptoms post surgery as before my surgery but was pretty compromised for a while. It took me until the end of July to start to feel pretty normal. I had some issues with dealing with the medications and once we got that figured out I felt much better. I am now back to doing whatever I want and feel great. We have a small farm in southern Indiana so I appreciate my being able to do more now than before my surgery. I was very compromised before my surgery. Recovering from the surgery is the hard part. I did have some fluid build up around my heart and Afib issues but those are now resolved. Stay strong and safe from Covid, get the exercise you need, eat well, and you will do fine. Good luck.

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Hi – sorry you are still having some issues. I had my septal myectomy at the Mayo Clinic in Rochester Minnesota almost a year ago, October 1, 2019. Before the surgery I could barely walk without getting out of breath. Right after the surgery I did not have any of those symptoms anymore. The post op was really hard and the one thing I will never forget is my back pain which was the most painful thing I have ever experienced. Other than that I did not have the same symptoms as before the surgery. My breathing was pretty much back to normal shortly after surgery. It is now gone and I can excersie play tennis etc. What symptoms are you having? I'm hoping they will go away for the Mayo Clinic is great.

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Hello, My husband had septal myectomy on October 4 2018, he was extremely compromised before surgery.but he did exercise daily and was not overweight. He was discharged 4 days post op and we flew home to San Diego 2 days later, apart from discomfort from the surgery he did amazingly well and was able to walk 4 miles per day with ease after 6 weeks and no symptoms, he takes 50 mgms of Atenolol daily I'm sure if you had other preexisting conditions the recovery is longer. he is 76 now.

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@rrowner2

Hello, My husband had septal myectomy on October 4 2018, he was extremely compromised before surgery.but he did exercise daily and was not overweight. He was discharged 4 days post op and we flew home to San Diego 2 days later, apart from discomfort from the surgery he did amazingly well and was able to walk 4 miles per day with ease after 6 weeks and no symptoms, he takes 50 mgms of Atenolol daily I'm sure if you had other preexisting conditions the recovery is longer. he is 76 now.

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Sounds like his surgery was successful. What were his symptoms before the surgery? Is he free from the symptoms still? Glad to hear he is doing great!!

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@bbonchek

Hello. I am glad to share my experience. I had septal myectomy surgery at the end of last February at Cleveland Clinic. I am an active 70 year old woman in good health otherwise. I did not have the same symptoms post surgery as before my surgery but was pretty compromised for a while. It took me until the end of July to start to feel pretty normal. I had some issues with dealing with the medications and once we got that figured out I felt much better. I am now back to doing whatever I want and feel great. We have a small farm in southern Indiana so I appreciate my being able to do more now than before my surgery. I was very compromised before my surgery. Recovering from the surgery is the hard part. I did have some fluid build up around my heart and Afib issues but those are now resolved. Stay strong and safe from Covid, get the exercise you need, eat well, and you will do fine. Good luck.

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When you say you were pretty compromised for awhile can you share what you were experiencing? I'm 9 weeks post surgery and it seems the healing is very slow. Week by week I see progress but day to day seems slow. I really thought I would not be feeling pain this far out but doing more each day seems the pain just lingers on though I only take Tylenol once in awhile. I try to go without any.

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@angiev18

Sounds like his surgery was successful. What were his symptoms before the surgery? Is he free from the symptoms still? Glad to hear he is doing great!!

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Hi.
My husband was diagnosed with HCM when he was 43 when he started taking atenolol, symptom free for years. Then in 2016 he experienced shortness of breath on exertion, meds increased and was kind of ok until he started having syncope and I wouldn’t let him take walks alone ( we live in the mountains) one evening his heart rate dropped to 30 and he was taken to hospital and had an ICD implanted that was March 2018, he was still functioning but struggled often, his HCM became obstructive so October that year he had surgery and the rest you know, he is fit and well and symptom free.

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@lailaamin

Hi – sorry you are still having some issues. I had my septal myectomy at the Mayo Clinic in Rochester Minnesota almost a year ago, October 1, 2019. Before the surgery I could barely walk without getting out of breath. Right after the surgery I did not have any of those symptoms anymore. The post op was really hard and the one thing I will never forget is my back pain which was the most painful thing I have ever experienced. Other than that I did not have the same symptoms as before the surgery. My breathing was pretty much back to normal shortly after surgery. It is now gone and I can excersie play tennis etc. What symptoms are you having? I'm hoping they will go away for the Mayo Clinic is great.

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For four weeks after my surgery I was relieved of the dizziness, wobbly legs, tiredness on exertion, head rushes. I was dealing with
the sternum pain and had some wound issues but none of the HOCM symptoms. Now the pain is getting better each day but some of the symptoms are coming back. I was told for about 6 months my heart will have to adjust and perhaps medications also will need adjusted. Im just trying to find out from others who have been there did symptoms come and go post surgery before they started feeling better.

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@rrowner2

Hi.
My husband was diagnosed with HCM when he was 43 when he started taking atenolol, symptom free for years. Then in 2016 he experienced shortness of breath on exertion, meds increased and was kind of ok until he started having syncope and I wouldn’t let him take walks alone ( we live in the mountains) one evening his heart rate dropped to 30 and he was taken to hospital and had an ICD implanted that was March 2018, he was still functioning but struggled often, his HCM became obstructive so October that year he had surgery and the rest you know, he is fit and well and symptom free.

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So glad for him. I too had ICD implanted 5 days past the septum myectomy, apical myectomy, amputation of left atrial appendage, and pulmonary vein isolation in July 2020. I'm looking forward to better days ahead.

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@angiev18

So glad for him. I too had ICD implanted 5 days past the septum myectomy, apical myectomy, amputation of left atrial appendage, and pulmonary vein isolation in July 2020. I'm looking forward to better days ahead.

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Wow, take your time with your recovery, it’s so individual. Im a former nurse so was expecting my husbands recovery to be longer. I know some participants on this site have really struggled with recovery. Take care of yourself

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@angiev18

When you say you were pretty compromised for awhile can you share what you were experiencing? I'm 9 weeks post surgery and it seems the healing is very slow. Week by week I see progress but day to day seems slow. I really thought I would not be feeling pain this far out but doing more each day seems the pain just lingers on though I only take Tylenol once in awhile. I try to go without any.

Jump to this post

For a few months post surgery I was just very tired and took naps every day. The pain subsided within 2 months and Tylenol was a big help. When I took walks I had to take lots of breaks and would get very winded. I would tell people I felt like I was walking through molasses. This summer I started swimming in our lake which was very beneficial. I did wear a swim belt while I swam. My physical therapist recommended the back stroke which helps to strengthen and stretch the chest area. Recovering from the trauma of the surgery is huge, But, my symptoms were very different than before the surgery when I had lots of dizziness, head aches, loss of stamina, hard to breathe, etc. Now 6 months out I feel great which I feel you will too with time.
It is also a process to figure out the medication routine which has been altered a few times to my benefit. I also do breathing exercises regularly which really helps to control blood pressure and help the lungs to stay strong. I also got an Apple Watch to monitor my heart. My surgeon recommended it. I can take EKG's to monitor for AFib and keep track of my heart beat especially while doing exercise.
Good luck. I am happy to share more. You will be fine.

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REPLY
@angiev18

For four weeks after my surgery I was relieved of the dizziness, wobbly legs, tiredness on exertion, head rushes. I was dealing with
the sternum pain and had some wound issues but none of the HOCM symptoms. Now the pain is getting better each day but some of the symptoms are coming back. I was told for about 6 months my heart will have to adjust and perhaps medications also will need adjusted. Im just trying to find out from others who have been there did symptoms come and go post surgery before they started feeling better.

Jump to this post

Hi angiev18, nine weeks is only relative, as each person heals from this at their own pace. I was right there with you at Mayo in July. So I can compare my notes with yours. I had a septal myectomy and a myectomy of the muscles around the upper portion of the atrium. I notice that this recovery seems to go in phases. Progress made, then it pauses. Then progress again. I was really active and healthy before the surgery so maybe that has helped me recover the way I am. I had a few occasions when I had chest pain and shortness of breath while I was walking. It was only a few weeks ago, and this week no chest pain. Just a little short of breath. The pain I have experienced is probably what everyone who has had open heart surgery experiences. You can't cut thru the sternum, open the aorta, cut out a chunk of heart tissue while your heart is stopped and not have some residuals! For my, the pain between my shoulders is annoying. It comes and goes. Somedays it's nearly non-existent and others I need an Advil. And I was totally not expecting my collar bones to be involved in this process. But there they are…making it difficult to pick things up using opposing force. I had no wound problems, but it took at least 6 weeks for the chest tube sites to heal. It feels 'tight' in my chest. Like I can't swing my arms around. It's getting better though. I also was told that this can take at least 6 months to settle down. The healing of the inside of the heart takes time. I am also 9 weeks out and each day is getting better. I look at where I was when I first got home and where I am today and that's my motivation! I move around way easier Sept. 25 than August 25. And way way better than July 25. Don't be hard on yourself. Or compare yourself to others recoveries. You are unique and you are healing that way you heal. I wish you the best going further down the road to recovery! You are a survivor! You survived the most difficult surgery there is! You're already a champion!

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@karukgirl

Hi angiev18, nine weeks is only relative, as each person heals from this at their own pace. I was right there with you at Mayo in July. So I can compare my notes with yours. I had a septal myectomy and a myectomy of the muscles around the upper portion of the atrium. I notice that this recovery seems to go in phases. Progress made, then it pauses. Then progress again. I was really active and healthy before the surgery so maybe that has helped me recover the way I am. I had a few occasions when I had chest pain and shortness of breath while I was walking. It was only a few weeks ago, and this week no chest pain. Just a little short of breath. The pain I have experienced is probably what everyone who has had open heart surgery experiences. You can't cut thru the sternum, open the aorta, cut out a chunk of heart tissue while your heart is stopped and not have some residuals! For my, the pain between my shoulders is annoying. It comes and goes. Somedays it's nearly non-existent and others I need an Advil. And I was totally not expecting my collar bones to be involved in this process. But there they are…making it difficult to pick things up using opposing force. I had no wound problems, but it took at least 6 weeks for the chest tube sites to heal. It feels 'tight' in my chest. Like I can't swing my arms around. It's getting better though. I also was told that this can take at least 6 months to settle down. The healing of the inside of the heart takes time. I am also 9 weeks out and each day is getting better. I look at where I was when I first got home and where I am today and that's my motivation! I move around way easier Sept. 25 than August 25. And way way better than July 25. Don't be hard on yourself. Or compare yourself to others recoveries. You are unique and you are healing that way you heal. I wish you the best going further down the road to recovery! You are a survivor! You survived the most difficult surgery there is! You're already a champion!

Jump to this post

Thanks for posting your comments. I appreciate the detail in your response. It really was quite something and still is somedays. Everyday waking up not knowing how today will be and just moving forward as best you can is all one can do. I also had an ICD implanted 5 days after the septum myectomy and apical myectomy. I'm still on left arm restrictions for 4 more weeks due to the ICD. I really never asked before surgery of what to expect painwise. Maybe because I was afraid of what the answer would be like, I didn't ask. No matter I don't think you could explain it. Even having experienced it myself, I couldn't possible describe the pain, and like you said it changes daily and it hits you in stages. Stage I for me after coming out of anesthesia was like PRESSURE, mostly on the left side like someone placed a 300 lb weight on me. That was for about 3 wks. Stage II was sternum pain, not pressure but pain for about 2.5 weeks. Im in Stage III right now and it feels like pectoral muscles across my chest are " on fire". Went from a walker to a cane, and presently nothing but legs wobbly, balance still a problem but getting better. Thanks for the encouraging words and can't believe we were probably walking past each other in the hallways post surgery. I have to say Mayo's nurses, tec's, N.P's on the Cardiac Unit in Rochester, MN are the most awesome, caring, PROMPT to answer your call light, human beings EVER!!! Did I say human beings? No, angels to lead you to the road to recovery!! Oh the Dr's are totally awesome too!

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@bbonchek

For a few months post surgery I was just very tired and took naps every day. The pain subsided within 2 months and Tylenol was a big help. When I took walks I had to take lots of breaks and would get very winded. I would tell people I felt like I was walking through molasses. This summer I started swimming in our lake which was very beneficial. I did wear a swim belt while I swam. My physical therapist recommended the back stroke which helps to strengthen and stretch the chest area. Recovering from the trauma of the surgery is huge, But, my symptoms were very different than before the surgery when I had lots of dizziness, head aches, loss of stamina, hard to breathe, etc. Now 6 months out I feel great which I feel you will too with time.
It is also a process to figure out the medication routine which has been altered a few times to my benefit. I also do breathing exercises regularly which really helps to control blood pressure and help the lungs to stay strong. I also got an Apple Watch to monitor my heart. My surgeon recommended it. I can take EKG's to monitor for AFib and keep track of my heart beat especially while doing exercise.
Good luck. I am happy to share more. You will be fine.

Jump to this post

Thanks for your response. It helps to hear from others of what their experience was like. Im 9 weeks post surgery. I was told for perhaps 6 months your heart is angry and starts to settle down. What were you experiencing symptom wise that medication changes were made? Are you talking less medications 6 months after surgery or more? Higher dosages or lower dosages of meds 6 months out? Hope you continue to improve and swimming helps get you stronger and stronger. Did you go to Cardiac Rehab therapy before you stage using your arms to swim? Best of luck to you!!

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@angiev18

Thanks for your response. It helps to hear from others of what their experience was like. Im 9 weeks post surgery. I was told for perhaps 6 months your heart is angry and starts to settle down. What were you experiencing symptom wise that medication changes were made? Are you talking less medications 6 months after surgery or more? Higher dosages or lower dosages of meds 6 months out? Hope you continue to improve and swimming helps get you stronger and stronger. Did you go to Cardiac Rehab therapy before you stage using your arms to swim? Best of luck to you!!

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My medications changed dramatically after my surgery since the meds before were trying to different things. Unfortunately due to Covid and I live in Southern Indiana in a small town, I was not able to do my follow up at Cleveland Clinic in a timely way. My local doctor had me way over medicated and did not listen to me properly. At that time I was light headed, had head aches, dizzy, and and no energy. I finally changed to a doctor in Indianapolis which is only 2 hours away and she is a specialist in my area of heart issues. She got me set on a better medication path in July and I am much better. The symptoms went away after the medication changes. I was also not able to do to cardiac rehab due to both Covid and medicare would not cover it. My physical therapist gave me the go ahead to swim but that was not until 4 months post op. But I can tell you this, 7 months out from surgery I feel great and you will too. It just takes time and perseverance. I see my doctor in Indianapolis in 2 weeks so will see what she says. I am so grateful for the wonderful care at both Mayo and Cleveland Clinic. FYI I went to Cleveland because we had family and friends there who could help out before and after surgery. They are both amazing places for heart issues.

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@angiev18

Thanks for posting your comments. I appreciate the detail in your response. It really was quite something and still is somedays. Everyday waking up not knowing how today will be and just moving forward as best you can is all one can do. I also had an ICD implanted 5 days after the septum myectomy and apical myectomy. I'm still on left arm restrictions for 4 more weeks due to the ICD. I really never asked before surgery of what to expect painwise. Maybe because I was afraid of what the answer would be like, I didn't ask. No matter I don't think you could explain it. Even having experienced it myself, I couldn't possible describe the pain, and like you said it changes daily and it hits you in stages. Stage I for me after coming out of anesthesia was like PRESSURE, mostly on the left side like someone placed a 300 lb weight on me. That was for about 3 wks. Stage II was sternum pain, not pressure but pain for about 2.5 weeks. Im in Stage III right now and it feels like pectoral muscles across my chest are " on fire". Went from a walker to a cane, and presently nothing but legs wobbly, balance still a problem but getting better. Thanks for the encouraging words and can't believe we were probably walking past each other in the hallways post surgery. I have to say Mayo's nurses, tec's, N.P's on the Cardiac Unit in Rochester, MN are the most awesome, caring, PROMPT to answer your call light, human beings EVER!!! Did I say human beings? No, angels to lead you to the road to recovery!! Oh the Dr's are totally awesome too!

Jump to this post

Isn't it crazy we may have been there at the same time. You are absolutely correct about trying to describe this to anyone. It's so recent that there are changes still happening. I bet in a year we look back and say to ourselves, "Wow! I feel so good compared to then." and this will all be behind us. Covid, heart recovery, the whole process! I remember ICU VERY well. I still have issues thinking about it. The pain, the endotracheal tube, the respirator…it was so intense. That's probably why they call it "Intensive Care Unit"
The food ordering took me two days to figure out. The machines we had to drag with us for so long. I was evaluated for an ICD but thankfully didn't need one. I honestly couldn't imagine having another procedure at that time! YIKES! And you got through that too! The nurses were amazing people. I bet I never waited more than a minute to have the call light answered. I bet I never slept more than 15 min at a time either! They are always doing something at all hours of the night. I know for me the phases I am moving through are all new to me, so each day I praise God when my feet touch the ground. I am in heart rehab 3X a week. The strength building is important. I want to get back to my pre-surgical health (minus the HOCM) as soon as possible. It just takes time. I can get in and out of my car almost normal now. Same with bed. I used to have to sit on the edge and contemplate how to do this in the least painful way. My sternum still is tender. The scar was overly sensitive for weeks. I couldn't stand even the softest t-shirt touching it! The rehab nurses told me that nerves are the last thing to wake up. The nerve in my back is still bothering me. It even hurts to walk some days. The stiffness and tightness in my chest are getting better. I knew there would be pain. You can't go through something like we did and not expect it. Just listen to your body and be very kind to yourself. You just went through the most difficult surgery there is and you need time to heal and process all this. The Mayo Clinic is the finest organization on the planet, and you are pretty special to have been able to be in their capable hands.
It's nice to be able to share with someone who just went down this road at the same time. I don't feel so alone. Like you said it is hard to describe the pain, the feelings, so thanks for sharing too! You stay focused and concentrate on getting stronger and better each day. Push yourself, but don't over do it! One day at a time. And before you know…you will be looking back at this experience and remember the first time you saw your scar and be proud of how strong you really are. You survived!!

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