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What was your journey to myectomy like?

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  • #16
    Re: What was your journey to myectomy like?

    I may get yelled at for this suggestion....but a really good chiropractor may be able to do more for your pinched nerve than allopathic medicine can..... The caveat being .....a really good chiropractor. I have one in Denver but don't know about anywhere else. Hope it subsides soon.... Good Luck glad you are on your way home.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #17
      Re: What was your journey to myectomy like?

      Mayo has on staff massage therapist as part of the pain management system. Ask a nurse to order it.
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

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      • #18
        Re: What was your journey to myectomy like?

        I got one the one day and asked for one yesterday several times but the still didn't come good news is my shoulder does feel much better. It was the most painful part of this whole thing.

        Getting ready for discharge now. Staying local until Sunday when we fly home. What a crazy ride it's been. I'm mentally and physically drained but I wil be just fine before I know it

        Sent from my HTC One_M8 using Tapatalk

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        • #19
          Re: What was your journey to myectomy like?

          I'm 2.5 weeks post-surgery and I feel worse in a lot of ways the past couple of days than I did right after I got back home. I was starting last week to sleep with just one pillow but now I can barely sleep even propped up. I've developed an odd pressure at the base of my sternum (between my sternum and belly button). It almost feels like someone is pushing on the spot right below where my sternum ends if that makes sense. I have no idea if that is just part of the healing or if there's something else going on. And the shortness of breath is there still and feels worse in some ways the past couple of days. I am waiting to hear back from someone on Dr. Schaff's team at Mayo where I had the procedure to see if this is all par for the course or if something needs checked out by my local cardiologist. It just sucks because I feel worse now than a few days ago and I've read a lot of post-myectomy posts that it's usually just part of the healing but I can't help but feel like I've been set back.

          I also went to my primary care doctor on Saturday because one of my chest tube sites was looking like it could possibly be infected so they did a culture and put me on Bactrim to be safe. I feel like when I started taking the Bactrim is when these additional problems started so I don't know if the antibiotic is kicking my butt or if it's coincidence. Either way, I definitely feel like I was feeling better 5-6 days ago than I am now. Trying to stay positive but blaaah


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          • #20
            Re: What was your journey to myectomy like?

            No matter what you have read...there is Always a bit of three steps forward and two steps back in the healing process with something as major as open Heart surgery. Don't compare yourself to others or feel you are somehow behind....The healing process is very individual. You are doing all the right things...contact with Mayo and with local MD. Ongoing Or worsening SOB and needing extra pillows to breathe at night is concerning. Could be you are a bit fluid overloaded...I had 12 extra pounds of fluid on board when I got home....also sometimes antibiotics and things like ibuprophen can cause you to retain fluid...also the fact that you had suspicious chest tube sites might mean there is some collection of old drainage under that site causing tenderness.
            It seems you may need at least a chest X-Ray or something......Keep pursuing with your docs until you get answers that satisfy you. Do you have a scale, BP cuff, thermometer at home? so you can give accurate data to your docs....Keep a record of your symptoms...then when you speak to the docs you can be very specific about what is happening and how long it's been going on.
            Hope you get answers and feel better soon.
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

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            • #21
              Re: What was your journey to myectomy like?

              I had that 10/10 shoulder pain about a week after coming home. Woke up early one Saturday morning just about crying. Called the post-op patient line at CCF and the nurse quickly put me through to the cardio-thoracic surgeon on-call. He explained the complex network of muscles cris-crossing the chest that had been disrupted my the sternotomy and that something had likely been pinched or irritated. He advised me to max-out my pain meds - something I had never come close to before - and to call back at the end of weekend if no improvement. I was OK in a few hours. It was my only case of post-op pain besides the usual modest chest discomfort. But boy it hurt like heck.

              We all react differently.
              Angus Campbell
              Golden Isles Region, Southeast Georgia, USA

              Dx'd HOCM at St Luke's Roosevelt, New York City, 2005
              Myectomy Jan 9th 2014 at Cleveland Clinic
              Drs Lever and Smedira

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              • #22
                Re: What was your journey to myectomy like?

                So I saw my local HCM doctor today and they are pretty confident that I have pericarditis so they started me on Colchicine (which apparently is what they use to treat gout, eek) and they put me back on Lasix since I have water weight in my abdomen and am up 5 lbs in a couple of days. Fun stuff!! The good news is the colchicine should help with the recent symptoms of SOB, pressure and swelling below my sternum, and issues breathing while laying flat within the next 2-3 days....thank God for that because I'm pretty miserable as of late!

                I'm glad I didn't drag my feet and try to tough it out but rather decided to call Mayo and then see my local HCM team...I sort of felt bad "bugging" people with my issues but hearing its pericarditis makes me think if I didn't go, I wouldn't be doing myself any favors sitting at home. You really have to trust your body and if you think something isn't right, it probably isn't!


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