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Heart Disease (Expert Forum)
Any ideas?
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve, Pacemaker, PAD, Stenosis, Stress Tests
Any ideas?
by tracey, Jul 14, 2000 12:00AM
I am a 29 yr old female, I had epilepsy as a child ( i was born blue) the year i had my last seisure was the year i started having a racing heart, i was 9 yrs old. since then I have had many things go on, my heart rate has been as high as 310 and as low as 2, and it skips. I have wore moniter for days weeks and months i have has stress tests, echos, heart caths, ep study, one where they went down my throat and currently I have a REVEAL internal loop recorder. I have seen 12 different cardioligst, i have been told that i have MVP, murmer, enlarged heart (slightly) and that I need a pacemaker, but no doctors will agree on any of these. When I get sick I can't even get up and walk across the room, if my heart beats fast you can see it from 6 feet away. I also get alot of numbness in my face and hands, severe headache and i cant see (i only see spots). I was ready to give up on ever finding out whats wrong but then my 33yr old brother died suddenly. There was not an autopsy done, we were told that his heart "exploded" ( iguess they said they could tell by his coloring) . He had had alot of the same symptoms as me only he was born with a hole in his heart that was fixed. If you can give me any clue as to where I should go from here it would be greatly appreciated. Thank You!
Doctor's Answer
by CCF CARDIO MD - DLB, Jul 14, 2000 12:00AM
The answer would depend on what the numerous tests that you already had show. If you have had a heart rate that goes down to 2, then a pacemaker does sound indicated. If you are having dangerous arrhythmias, the Holter and loop monitors or stress test should have picked this up by now, and certainly the internal loop recorder should show if you have heart rates that are too fast or slow.
I've had a similar problem since surgery in Mar. '99 to repair my mitral valve and ASD. Though I don't think mine is as constant as yours...it's still bothersome. I also have sharp shooting pain under my shoulder blades and around my rib cage. I don't think there's anything to be done about it -- and your doc didn't handle it very well.
Periodically I take a pain killer when it really is bothering me (also my sternum sometimes REALLY hurts). My wires broke open and had to be removed at nine week post op and then two more sets at 12 weeks post op -- and I'm sure that didn't help matters.
The CCF docs won't answer your question when posted as a comment. They simply don't have the resources anymore to answer as many questions as in the past.
Just wanted to let you know you're not alone (and I have another heart patient friend who has constant pain in her back post op).
oh well.
shannon
Hi, I just came here to read and in hopes of posting a question (haven't been here before, just finding out that posting a question might not be possible).
I happened across your comments on pain in the area of the ribs (thoracic region). You may want to look into the possibility of a condition called costochondritis. It is an inflammation of the cartilage around the ribs, which can be caused by different mechanisms...certainly truama, like you encountered in surgery. I know how painful it can be. I haven't been able to lay on my right side for 9 years due to pain in this area (caused by truama, not surgery, however). I have been left with muscle atrophy problems and knots in the muscles which have caused the ribs to become dislocated, etc. I also have FMS/MPS (fibromyalgia and myofacial pain syndrome) as a result of the injury I had and the time laid up with that injury, which has contributed to the ongoing pain in that area. FMS can come on following truama.
Just some thoughts about some things that you might want to look into. If you are interested in reading some messages about costochondritis ('costo' or 'CC,' for short), you could go to the following address: http://www.egroups.com/list/costo/
You do not need to be a member to read, but if you want to post, you would have to join (free).
Best Wishes,
Sue
I hope you find the answers to bring you relief from your pain. I understand where you are coming from. Fixing one problem to find a new one as a result is a tough pill to swallow. Keep looking for those answers. To offer you some light at the end of the tunnel...I am doing better than years back when it started, so try to have hope. It is hard to find that hope when the pain can overwhelm us, but hang in there.
Perhaps finding a 'good' physical therapist could be a place to start. There may be obvious things going on that he/she could discover. I should have been sent to PT from the start and was not. My problems escalated due to that. BUT then again, you have to find the right PT that can help you.....not always easy to do. I went to PT off and on for a couple years, with no progress, sometimes, made things worse, but at best, no change. THEN I found a guy that realized the intense muscle spasms had actually dislocated my ribs. He was able to manipulate them back into place, but that does not always last, requiring more corrections. I was able to make very slow progress since that point, but it is not 'fixed.' Probably will always be a problem, but I am managing pretty well with that particular area at the time being.
As with my injury, no one told me that the 'fix' might cause other problems...I had no choice but fix it.....but they should have been smart enough to know that I would need other treatment once I healed in that area, rather than dismissing my NEW pain, telling me it could be totally unrelated to what had been going on and washing their hands of me. I was told to come back in 3 months if the pain continued....I had already suffered for over 3 months with it only worsening! Yes, you are right, we need to be leveled with.
Take care and hope you let us know how you are doing. Pain-free days and nights to you!
Sue