Shannon-
My name is Drew and Im a 52 year old male, always maintained a high level of fitness my entire life. 18 months ago i had mild chest tightness and ...Read more
Shannon-
My name is Drew and Im a 52 year old male, always maintained a high level of fitness my entire life. 18 months ago i had mild chest tightness and lightheadedness during about 20 minutes of moderate exercise. Over the next several months my exercise tolerance never really came back which lead to numerous ER visits and eventually seeing cardiologists at Univ of Madison, WI hospital, Mayo clinic, Cleveland Clinic and in June of 2017 Stanford. In 2016 a prominent MB was found during a cath angi at UW, no other heart or coronary issues were found. I was told by UW, Cleveland and Mayo the MB is benign and not the cause of symptoms. I was told by Dr Schnittger/Stanford it is undoubtedly causing your issues. I went to Stanford in June of 2017 for cath-angio and other tests (i'm sure you've had them all--thank god for good health insurance) related to the MB. The testing showed an FFR of .72, anything below .8 is considered a candidate for debridging and Dr Schnittger urged me to have the procedure.. From 7/2016 to 11/12/17 I have had no daily pain or symptoms and take no medication, but I cannot tolerate any significant exercise very well. If I keep HR under 120bpm and length of exercise under 45 minutes I have no symptoms and recover well. If I go beyond the recovery is the biggest issue. I do everything very moderately and thoughtfully.
Two days ago I had the first episode of chest tightness since 7/2016 that lead to an ER visit. All signs of HA were negative and I was released. However, I have just recently reached back out to a robotic surgeon Dr Balkhy out of Univ of Chicago (I live in northern Illinois) to perform the debridging on 12/18/2017...... 100% endoscopically. He states 2-3 days max hospital stay and return to work in 2-3 weeks. He has done 100s of complicated robotic bypasses, but only a handful of actual debridging surgeries. Living in Illinois with a family and 2 little kids doesn't really allow me to consider Stanford for the surgery.
I'm very concerned to hear that your MB is scarring or failing, I have done a ton of research, as I am sure you have, and have never, ever heard of this complication. Dr Schnittger never mentioned it...and in fact I'm fairly certain I asked this question and she stated it wasn't possible..... ?? I have never heard of the risk of Pericarditis before either. I would hate to go through the surgery with 4 of 6 cardiologists/surgeons saying it is unneeded and potentially end up worse off!
Any additional information you'd be willing to share about the myotomy failure would be greatly appreciated.
I wish you all the best in regaining your full health--- I know first hand how depressing it is to be a fit active person and restricted to your activities.
shannon parratto Hi Drew ,apologies for delay in response, your note never reached me via email. I did have a promine ... Read more
shannon parratto Hi Drew ,apologies for delay in response, your note never reached me via email. I did have a prominent MB un-roofing and after more follow up appt with Dr Schnittger we determined that there was a small portion of the bridge that wasn’t unroofed. This is most likely the cause of the slight discomfort I still experience. After 6 months of various beta blockers and experiencing a little relief, I did decide to discontinue the meds so I could exercise normally. I think I may have jumped the gun in my previous post but important to note they are still finding out more and more about MB, as I am sure you are aware. Hope you are doing well and let m know if you have any questions.
:)
Hi Shannon -
I'd love to connect a bit more about this recurrent pericarditis. We seem to be around the same age and, like you, fitness is a big part of my ...Read more
Hi Shannon -
I'd love to connect a bit more about this recurrent pericarditis. We seem to be around the same age and, like you, fitness is a big part of my life. So, like you, OHS and pericarditis we're not exactly in the plans for this age. :)
I'd love to pick your brain sometime about pericarditis treatment. Perhaps we can have a chat on the phone at some point.
Please contact me at jlashins@gmail.com and maybe we can set up a phone call?
Thanks
Jeff
shannon parratto Hey Jeff, Hope you are feeling better these days. I am 3 years post-op and just had another bout of ... Read more
shannon parratto Hey Jeff, Hope you are feeling better these days. I am 3 years post-op and just had another bout of pericarditis. I am officially diagnosed with Dressler's Syndrome. My episodes are farther and fewer between, hope the same for you.
shannon
Hi Shannon -
I came across your profile while looking into pericarditis. I had OHS May 2015 and am recovering from my 3rd bout of pericarditis. I am sooo ...Read more
Hi Shannon -
I came across your profile while looking into pericarditis. I had OHS May 2015 and am recovering from my 3rd bout of pericarditis. I am sooo frustrated. I am back on Prednisone and Colchicine and pretty concerned that I won't get this to stop recurring.
What has your experience been with pericarditis?
Thanks
Jeff
Hi Shannon, we are all different but after a pulmonary effusion and pericarditis 6 weeks after surgery, and being prescribed ibuprofen, steroids and colchicine, ...Read more
Hi Shannon, we are all different but after a pulmonary effusion and pericarditis 6 weeks after surgery, and being prescribed ibuprofen, steroids and colchicine, i found that really taking it easy allowed the heart and inflammation to settle. I had been advised not to do anything to aggravate the heart ie. vigorous exercise. I am 10 months post surgery and almost feel like my old self. Very glad I took it easy. Don't be too quick to try to 'get back to normal', be kind to your body, it will happen
David Augustus posted a note for shannon that says:
Shannon, I had that procedure conducted two weeks ago as the doctor drained 1.5 liters of fluid off my heart. I was not feeling up to par and the echocardiogram ...Read more
Shannon, I had that procedure conducted two weeks ago as the doctor drained 1.5 liters of fluid off my heart. I was not feeling up to par and the echocardiogram discovered the fluid. I felt better after the surgery and since I had fluid built up throughout my body and was put medication to get rid of fluid. You can look up journal for the specific medication that they gave. I was in the hospital less than 24 hours. The doctors assured me that this a by-product of OHS and that I didn't cause this issue. Good luck.
shannon parratto Thanks David, sounds like we were on a similar program. I zipped down to Stanford yesterday and my c ... Read more
shannon parratto Thanks David, sounds like we were on a similar program. I zipped down to Stanford yesterday and my cardiologist did an echo. I have some pretty good inflammation but not enough fluid to have to tap it and drain it….thankfully! I have to continue on the same med as you ( Colcrys) for another month or so and hopefully the symptoms will subside. I too was given reassurance by my cardiologist and surgeon that it can be part of the recovery process and I didn't do anything to bring it on. So I rewarded myself with a good road bike ride today :) Good luck with your ongoing recovery, it looks like you are coming along really well despite the setbacks.
Wow, Shannon, lots of pressure on you, apparently a lot of it self-induced. Remember you just had MAJOR HEART SURGERY, and 8 weeks is just the start! You're ...Read more
Wow, Shannon, lots of pressure on you, apparently a lot of it self-induced. Remember you just had MAJOR HEART SURGERY, and 8 weeks is just the start! You're going to be fine, but it does take time. And with time things will get easier and easier......
Depression is evidently pretty common. I didn't have that, though at times I felt like things were just moving too slowly. I hope things get better soon for you. Meanwhile, breathe and remember all the precious things you have.......and now a longer life to enjoy them!
Don't do too much too soon. It takes time to heal, even though you may feel good. It's OK to take it slow for awhile. Life is a marathon, not a sprint.
:)