Post septum myectomy

Posted by angiev18 @angiev18, Sep 24, 2020

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.

@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.

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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!

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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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@karukgirl

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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The first week home I stayed at my mom's and my sister from TN and her husband came to care for me. When it wasn't meal time, shower time, medication time, physical therapy time, well things would get quiet and family doing their own thing, I would just close my eyes to relax and my mind would fall back to the memories of the day of surgery, waking up in ICU, then waking up the first time on the Cardiac Unit, sitting up with arms crossing my chest and scoring my hips to the edge of the bed to go to the bathroom with three nurses helping me with all my attachments, the 3 chest tubes attached to their cumbersome 18 x 24 in plastic drainage containers,
the oxygen tank, the wound pressure machine, the IV pole and bag, the walker, standing up and thinking, "My Gosh what have I done to myself? What was I thinking? Is this really going to be worth it? How am I going to get thru this? " The Nurses, and their Tec's, Aids almost have a second sense of how overwhelmed you feel and encourage you offer support, applaud your smallest accomplishments. I felt like I had a team of cheerleaders behind me that believed in me when I didn't have the strength or doubt clouded my best intentions, they were there, the staff on the Cardiac Unit. And your right, never had to wait more than seconds after hitting call light and someone was at your door asking how they could help. Never once did they say, hold on I will get your nurse. If you needed to go to the bathroom they unhooked all your equipment, attachments, helped you up, walked you to the bathroom, whatever you needed. When the scary memories start cropping in when I'm alone and things are quiet, I flood my mind with the wonderful acts of kindness I received everyday from the Cardiac Nurses, NP's, Tecs, Aids, Dr's. God Bless Mayo's and all the caregivers there for the care they give to their patients, above and beyond what is expected of them.

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@bbonchek

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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Thanks for your response and for the encouraging words. I have not started Rehab yet at 9 weeks out. I had ICD implanted on left side 5 days post op of septum and apical myectomy I have restrictions on left arm for 3 more weeks then will begin Cardiac Rehab. So you knew you were not on the right dosages, mddications because of your symptoms and found a different doctor in Indianapolis? I'm also dealing with the same situation right now. I have an appt with a Heart Failure doctor in 2 weeks. Before having the surgery I thought about how it would be having the doctors who performed the surgery 6 hours away and then transitioning to a local Cardiologist. It would be interesting to hear advice on finding the right Cardiologist locally after having heart surgery at Mayo's. Good luck to you. 7 months out, can't wait!!

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Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings. If anyone in this group is experiencing post intensive care symptoms, I want to let you know that there is a support group for you on Mayo Clinic Connect here:
– Intensive Care (ICU) https://connect.mayoclinic.org/group/intensive-care-icu/

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Hi. Had septum myectomy, apical myectomy, pulmonary ablation for aFib in July 2020 at Rochester, MN. Five days later before being discharged had ICD implanted. Recovery was slow for me with 3 steps forward and two back. Very difficult getting my blood pressure under control about 2 months post surgery. Six and a half months out now having Left Atrial arrhythmia's. Has anyone who is post septum myectomy experiencing other heart problems after having surgery? Im wondering if I need to go back to Mayo's for follow up. Anybody else go back to Mayo's for further care post surgery rather than see local doctors?

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@angiev18

Hi. Had septum myectomy, apical myectomy, pulmonary ablation for aFib in July 2020 at Rochester, MN. Five days later before being discharged had ICD implanted. Recovery was slow for me with 3 steps forward and two back. Very difficult getting my blood pressure under control about 2 months post surgery. Six and a half months out now having Left Atrial arrhythmia's. Has anyone who is post septum myectomy experiencing other heart problems after having surgery? Im wondering if I need to go back to Mayo's for follow up. Anybody else go back to Mayo's for further care post surgery rather than see local doctors?

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How are you doing? Did you go back to Mayo?

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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.

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I’m sorry you have pain. I had my septal myectomy in January. Next month I will be 81. I was like you and thought I would try to tough it out and try not to take the Tylenol. When I left Mayo after surgery, the Mayo nurse told me they wanted me to take Tylenol for at least six weeks because Tylenol helps with the healing process. I found that it really helped me with stopping the pain so I could sleep. If you have doubts about taking it, you might want to call or email the nurses at Mayo. Good luck. I feel so much better now even though I was told my recovery would take a year because of my age. It is worth it.

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I had it 3 weeks ago and still extremely sob.does it improve with time?

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@samqrs

I had it 3 weeks ago and still extremely sob.does it improve with time?

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Absolutely, I am feeling great now. Cardio rehab has gotten me back to as normal as I can get at 81. I’m doing house and yard work and resuming my social life. Be patient and maybe keep in mind that depression is common after surgery, but it gets better with time.

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