Any ideas?

[tracey]

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!

[CCF CARDIO MD - DLB]

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.

[james]

Well first let me say I have to post a question somewhere cause everytime I try to post one it says the question limit for today has been reached.  I just hope one of the cardiologists will respond to my question.  I'm 24 and have had two open heart surgeries to repair my aortic valve.  The first in 1992 was to reconstruct my valve and the second in 1999 was a replacement St. Jude aortic valve.  Now since my surgerg in October of 1999 I have had mild to severe side discomfort on my right side around my ribs.  I was told at first that they didn't know what it was and then I was told a few months later again by my surgeon that it happens sometimes from being spread open so wide.  Well in the meantime I have had to live with a lot of discomfort and a lot of pain.  I have had an ultrasound for my gallbladder, two cortisone shots in my side, numerous x-rays, and most recently I had a Catscan to rule out any growths or abnormalities.  In April I saw my surgeon again and he was a complete jerk regarding my symptoms.  He actually told me when he heard again of my recurring pain "That's Life".  I don't know what his problem is but I didn't go into the hospital with a pain in my side.  But I did wake up with one.  He also said that it sometimes happens.  Well I was never warned of any such thing happening to me.  I may have gotten my heart repaired (supposedly anyway) but I have just gotten another problem to deal with.  It seems that most doctors can't solve any problems.  They can just help you endure them and then cause more.  I'm not saying all doctors are like this but I have had more then my fair share of problems that I did not have before a couple other surgeries I have had since I was a kid.  I am afraid to do much of anything these days like throw a baseball or shoot a basketball or lift weights because of the pain I have experienced when I have tried some of these things.  I can only hope a doctor out there has some insight.  I know I can't be the only one out there who has ever gone through this.  I don't want anything but to have my side be normal again.  Well again I'm sorry about having to Post this information here but what other choice do I have.  I'm desperate for answers and I hope someone can enlighten me.  Thank you all.

[Shannon to Peter]

Dear James,

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

[sue]

To James and 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

[james]

I just wanted to say thank you to Shannon and Sue.  I appreciate your help.  I'm sorry to hear that you are both still having such problems.  Makes me feel like that light at the end of the tunnel of not having this pain is going darker by the second.  It's not your fault I have felt that way for awhile now.  I just can't understand how these doctors can do so much of this surgery and they don't let you know any possible complications.  I only knew of a stroke and of endocartis.  Nothing else.  It seems they want to save so many people but are they really saving us or just prolonging our lives which are sometimes full of pain just so they can get consistent work through the years.  So instead of them actually being able to fix the problem they just make it more tolerable and in more instances then I realized they are causing symptoms that were never there before.  I want to live don't get me wrong but when you are in pain or uncomfortable all the time or a lot of the time what kind of life is it anyway?  I would just like a doctor to be straight forward with me about what can really happen and what I may feel after one of these operation.  I don't want to know about the 1 in 1000 that lives their life like they were reborn and can do everything but about the other 999 of that same 1000 that is still fighting.  Whether it be the little things or major things.  Honesty is the best policy and I don't want to be some doctors customer.  I am not a car.  I want to be looked as someone in need of help and that this person can help me get better.  Again thanks a lot Shannon thanks a lot Sue.  I will look into that costochondritis.  Hope all is well with the two of you.  And if not keep looking for answers.  We should not have to be in pain.  bye.

[Sue ~ to James]

Hi James,

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

[james]

Thanks again Sue for you insight.  I myself want to start getting into shape and lifting weights a few times a week and I'm scared of the pain I feel.  It doesn't bother me to lay on my side but it does bother me if I bend over something or lean against something and of course when I have lifted stuff.  As I said before I'm not really so mad that I have the pain but more that my Surgeon (who is a complete egotist if you meet him) just said I had to live with it but at the beginning said he didn't know what it was.  So the problem is the lack of responsibility here.  We aren't playing with a car here.  If so then they could send me back to the shop and within a couple days or week max I would be back at home running better then ever.  But since we are not cars we can't do that.  Everytime we are opened up we are at risk of complications such as stroke or infection.  We know of these things but they don't tell us that our sides are going to hurt because (whether negligent or by accident) they spread our ribs open to far.  I want someone to take some responsibilty for what I am going through.  I didn't do it to myself and I placed a lot of faith in trust in this surgeon to make me be able to live a better life.  And so far that idea is a complete joke.  Also I have had numerous x-rays, a gallbladder ultrasound, Catscan, and two cortisone shots to help find the cause of my pain.  And I do have insurance but they don't pay everything and even with the insurance I don't think they should have to pay for.  It's not something that just happened it's something that resulted immediately after surgery.  Do I want to get paid off for my suffering here?  No I just want to not owe any money and to be free of pain.  Cause it's not at all fair that this happened.  I was thinking yesterday that I wish I hadn't had this last operation.  Maybe I was tired a lot and limited in stuff I could do but I wasn't in pain from it.  Now I'm still tired and in pain.  I would go back in time and change it in a heartbeat.  I just think these doctors need to take responsibility for their actions.  I mean if I make a mistake I have to own up to it and I don't play with people's lives.  So you would think that because they do that they would raise their hand and say that they didn't do all that they could.  Sorry for writing so much but it's an issue I deal with daily and it's not getting any better.  We place our trust and more importantly our lives in these doctors and surgeons hands you would think they would do everything in their power to make us better.  Cause just cause they are a doctor/surgeon doesn't mean they are good at it.  Anyway everyone out there take care and thanks again Sue.

[Sue ~ to James]

Hi, me again :)

You mentioned wanting to do some weights, etc. but are afraid of the pain.  If this is your plan, I would really encourage you to see a physical therapist that can guide you in that area.  If your pain is due to inflammation in the area of your ribs, then weight lifting could surely make that worse.  Also, from my experience, the sooner you work on repairing the damage, the more likely you will achieve better results, IF this is a muscle/tissue/cartilage thing going on.  

A physical therapist can evaluate your situation first, to see if you need some sort of treatment to loosen the area, gently stretch the area over time, before beginning a wt. lifting program.  A couple things that they may use to help loosen the area is ultrasound, microcurrent (by the way these are painless ~ some may feel some little '*****' sensation with microcurrent), heat and/or ice, followed by massage and easy stretching, accompanied by stretching exercises you will do at home between appts. and afterward.  If you find your pain lessening and flexibility improving they will begin to add light weight and eventually add more weight as you progress.  I started with 1# wts., once it was felt safe to add weight (which you can use soup cans, but I found it easier to grip store purchased weights when I moved up in size, which were very affordable - $2 each or so, for that size at Wal-Mart).

It does sound like your damage was done by over-stretching of your ribs during surgery, from what you said.  IF that is the source of your pain, then PT would be a good starting point for you to consider.  I know you mentioned insurance not always covering everything and that can be tricky, especially with PT, since insurance companies usually limit the number of appts.  You have to continue at home with the exercises, but when the problem is bad enough to require more hands on treatment and ultrasound and microcurrent then getting adequate treatment may also become challenging.

Once again, hope this is helpful and that you will soon be doing much better.  I understand the frustration you are feeling by your situation and I hope you will find ways to improve your painful condition; it will help with the frustation too :)

Best wishes,
Sue

PS I don't have a heart condition requiring surgery (at least not that I know of or at this point!) but I do have another medical condition (endometriosis), incurable at this time and the main/best treatment at this time is surgery....and this often means repeated surgeries, so I feel your frustration there too.  I had one major surgery and need another.  Unfortunately, there are only a handful of doctors in the US doing this surgery exclusively and other surgeons are lacking the skill needed, often leaving women with this disease in pain or more pain following surgery.  Some women have had an unbelievable number of surgeries.  So the frustration and pain level is high.  I have needed surgery for this for over 2 years, but due to the rib problems and FMS/MPS and lack of an expert surgeon that I am able to get to...I continue on in pain with the condition worsening.  One often seems to get caught between a rock and hard place when dealing with health problems :(  I feel for all those in difficult health situations.  One thing for sure, we don't take good health for granted!  
Take care, James, and get well!