My first post

[woodworker5280]

Hello folks. I discovered this site before my surgery last month, but ran into registration issues that I didnt resolve until the other day (thanks Ross!).



My name is Aaron and I'm 26 years old, living in Denver Colorado. I found out I had a bicuspid AV when I was 17 and was under the care of a cardiologist at Duke until I moved to Denver in 2005. At that point my cardiologist told me I could stop taking my atenolol because my aorta hadn't grown in over 2 years. I finally got some state-funded healthcare and went to see a cardiologist for the first time in 3 years and was told I needed surgery very soon as I had suffered an aortic aneurysm (it was at 5.6cm). I had AVR and aortic root repair on November 13th at the University of Colorado Hospital in Aurora, CO. The surgery was successful, however I suffered ventricular fibrillation right after they initially closed me up. They opened me back up and defibbed me and I only spent about 36 hours in ICU. My stay in the hospital started off pretty bumpy as I had a series of the most terrible, compassionless nurses ever. After making a stink about it to the charge nurse and another higher-up, I seemed to receive much better care. Because of the V-Fib, they ran a nuclear stress test (NOT pleasant) and electrophysiology test to see if there were any blockages in my heart that may have caused it. After the tests and 9 days in the hospital they decided it was just the trauma of the surgery that caused it. I've been home almost 3 weeks and am feeling remarkably better, however I do have some concerns I wanted to share.

1. These have mostly gone away, but I was experiencing frequent optical migraines (never had them before) that were quite debilitating. Is this a normal thing? I was told I was simply dehydrated and that having been on bypass could have something to do with it.

2. I'm having tension headaches every day. They usually last most of the day and get worse when I sit for a while and then stand up. I've been taking Excedrin and drinking lots of water but that doesnt seem to work. Today is the first day I've been off all painkillers (was on Oxycodone and Percosets) so I'm hoping the headaches might get better.

3. I'm 6' 5" and very skinny. Also, my chest (bottom of sternum) is pretty concave. When I breathe in, the pounding of my heart gets very loud and intense, feeling like someone's punching me from inside. This sensation is not foreign to me as it was a symptom of my bicuspid atrial valve; however it was NEVER close to this intense. I'm told by my surgeons that this should go away but I'm really not convinced. Should I be concerned? Can my heart literally be too big for my chest? It's quite uncomfortable and I'd like it to stop. It doesnt help that my resting pulse seems to stay around 88-90, getting up into the 100's after seemingly mundane exercise (getting up to go to the restroom, going downstairs to get the mail, etc).


So sorry for the huge rant, it's just nice to have a forum where I can voice my concerns to people who know what I'm going through.

Thanks in advance for any suggestions/advice/comments. I'm looking forward to being a part of this community and possibly even helping others out there who have to go through the same thing (could be worse, but it's still not very much fun!).

Thanks
Aaron

 

[Philip B]

You're fixed!

You're fixed!

Hi Aaron,

Glad to hear that your AVR and aneurysm repair is done. It's not unusual to encounter some bumps with a surgery that is as major as what you had done.

My AVR and aortic graft surgery was done at Porter in Denver back in March of 07. It sounds like you've got a good start towards advocating for yourself. You'll find most of the folks who regularly frequent this forum are firm believers in insisting that health care professionals provide decent standards of care.

It's also pretty normal to experience some bumps following the kind of major surgery that you had. The pounding heart feeling that you get and the rise in heart rate after physical activity sound pretty normal. My heart rate improved as I healed and got into a regular exercise routine. These issues are good discussion topics if you are still seeing your surgeon and/or your cardiologist.

Body acoustics vary from individual to individual. In the months following my surgery, I wondered if I'd ever get used to the sound of my mechanical aortic valve. Now, I seldom notice it unless I'm engaged in strenous exercise. Early this week I got an ear infection and for some reason my heart seemed like it was trying to pound right out of my chest for a couple of days. I guess the short story is that you'll probably adjust, but things can and probably will happen that make you more aware of heart sounds.

OHS is a big deal and the recovery/rehab road is challenging. Just focus your efforts to make every new day better than the day before and look for ways to see the challenges in a positive light.

-Philip

 

[netmiff]

Hi Aaron, and welcome to the madhouse!

First, are you on any medication - particularly beta-blocker or blood pressure meds? I had AVR (mechanical) and my heart had slightly enlarged to compensate for the decreased blood flow. After surgery, they told me before, my heart would still pump, and it would take a while for it to get used to having a 21mm valve instead of a .5 valve. So, they (almost routinely) put me on a beta-blocker and BP meds immediately after surgery. Even so, my BP was over 190/?? at one point, and nearly delayed my release.

I thought, at times, in the hospital, that my heart was going to jump out my throat ! After they got my BP under control, and the beta-blockers kicked in, it wasn't so bad.

Have you been tested for Marfan's syndrome? If you don't know what that is, there is a SEARCH button at the top of this page, or check out the congenital heart disease site - the address must be posted somewhere on this forum!

Lots of people on the forum experience increased or new ocular migraines, and they do seem to go away. I didn't, just passing on what I have read here.

Hope I've helped, a little, there will be others along, too, that may explain better than I can.

 

[PairoDocs]

1. These have mostly gone away, but I was experiencing frequent optical migraines (never had them before)

2. I'm having tension headaches every day. They usually last most of the day and get worse when I sit for a while and then stand up.

the pounding of my heart gets very loud and intense, feeling like someone's punching me from inside.




Dear Aaron,
Welcome to the madhouse, and welcome to the other side of the mountain.
My husband is actually the one who had the OHS, but he (and many others) have experienced similar problems. Chris got a lot of "optical migraines" at first, but now they are extremely rare. Because bypass can cause microemboli, we did see an ophthamologist, who could find no evidence of a problem. Chris is convinced that these headaches and vision problems were actually caused by the metoprolol; the brand name, Toprol, caused fewer problems, but the headaches did decrease markedly after he stopped the medication. We did some research and found that metoprolol certainly could cause these migraines; however,he needed to be on the medication for his heart.
The tension headaches could be simply that, or caused by the sudden drop in blood pressure when standing or changing position. Medications used to control blood pressure and heart rate are famous for doing that. Measuring blood pressures standing, sitting, and supine can be done in the doctor's office. Meanwhile, avoid sudden changes in position (like jumping up to answer the phone), stay hydrated, and treat any anemia.
The chest pounding is very common, with many theories as to why it occurs. Most folks learn to ignore it , but it can be a sign of congestive heart failure, so be sure to bring it up at your next visit.

For that matter, write these questions down and ask your doctor!
Take care and God bless.

Freezing in Idaho,
-Laura

 

[zipper2]

Hi Aaron, i don't have much advise for you,

just glad you found vr and sorry for the reasons.

but we all sail the same ship one way or another,so glad

you are here to be apart of us.

zipper2 (DEB)

 

[briansmom]

Welcome to our group. I am glad that you made it over the mountain, in spite of the shoddy treatment you received. Most of your symptoms seem to be common after OHS. Are you on any heart meds?

 

[woodworker5280]

I guess I forgot to mention the meds I'm on. I was first on Metoprolol but found it wasnt doing much good, so I was switched to Atenolol (first 50mg/day, then up to 75mg). It seems the migraines that blurred my vision went away shortly after switching to the Atenolol (which I had taken from age 17-23). I also take 5mg Coumadin once a day.

Thanks for the quick replies and kind words. Looks like this will be a really nice, comforting resource to have. I'll be going in next week to the Congenital Heart program at UC Hospital so hopefully I'll get some good care and new insights into my condition.

Trying to keep my eyes on the prize,
Aaron

 

[kfay]

Aaron, I also experienced a huge increase in my migraines after surgery. It took about four months for them to settle down and go back to my normal pattern. I think the thumping in your chest is something alot of us feel after surgery. I noticed mine just got better with time...your heart has been through a major trauma and needs time to heal. However, if you are concerned about any issues, call your Dr. and run them past him.

Kim

 

[WayneGM]

Welcome to VR. Glad you found us.

 

[Mary]

Welcome to VR, Aaron!

 

[lisou]

Hi Aaron just wanted to welcome you and wish you all the best!

 

[woodworker5280]

thanks folks for the welcome! Marfan's was ruled out very early. The way my bicuspid valve and dialated aorta were discovered was from an echo ordered by my PCP after he thought I might have Marfan's. I'm very tall and skinny, and have a concave chest. I'm becoming more and more curious these days as to whether ruling it out was incorrect. The thing is I'm already on beta-blockers and have had my AVR surgery so I'm not sure what other treatments I'd be on even if i DID have Marfan's. I was just reading about Marfan's and saw something called the Nuss Procedure where a metal bar is inserted into the chest to literally "pop out" the concavity. Sounds pretty painful, but I'm wondering if it might help with the pounding sensation if my heart had a little more "room to wiggle" as it were.

Any thoughts?

 

[danb1983]

I have all 3 of your symptoms too - I have always had eye migraines, and since my surgery - nearly 3 weeks ago too I have had frequent banging headachess - I understand both of these symptoms are quite common post surgery.

As for the heart thing, I have a higher heart rate post surgery - initially at rest it was 110, going up to 130+ doing "mundane" things like walking to the bathroom, and even just getting into bed.... It has come down a bit, and currently is about 100 resting - I was really worried about this, but I have been reasssured it is also common enough to have a higher heart rate - that just after heart surgery the heart is brusied and "angry" and just has to work a bit harder generally - as long as it is a normal rhythm you should be fine - and im sure it is - theres no way they let you go home with an abnormal one

Just try not to worry too much about your heart rate - your doctors are the experts, and if they are happy for you to be home then you should be happy too - easier said than done, but I was told worrying about my heart rate or not doing activity because of it would only make it worse...

Hope some of that reassures you, youve only been out 3 weeks, youre still under stress, and recovering, it will all get better... so I'm told

 

[Eva]

thanks folks for the welcome! Marfan's was ruled out very early. The way my bicuspid valve and dialated aorta were discovered was from an echo ordered by my PCP after he thought I might have Marfan's. I'm very tall and skinny, and have a concave chest. I'm becoming more and more curious these days as to whether ruling it out was incorrect. The thing is I'm already on beta-blockers and have had my AVR surgery so I'm not sure what other treatments I'd be on even if i DID have Marfan's. I was just reading about Marfan's and saw something called the Nuss Procedure where a metal bar is inserted into the chest to literally "pop out" the concavity. Sounds pretty painful, but I'm wondering if it might help with the pounding sensation if my heart had a little more "room to wiggle" as it were.

Any thoughts?

Hi Aaron and welcome!

Here is my humble opinion...first, I am not a doctor...after my surgery I felt too many new things that felt strange which I did not feel before surgery, including the heart's pounding...read things on internet which symptoms were similar to mine, ran to doctor, he ruled them out, yet inside me I remained suspicious if he was wrong It was all anxiety as all those symptoms subsided with time...it was only anxiety and fears after such a big surgery.

You just had the surgery, and the pounding is normal to meand I think to some other members, as I remember. I am not very thin (I wish), but the pounding was very loud when I woke up during the night or early morning, or when I was dehydrated...it is getting better. The heart is adjusting to the new valve and healing from the knife and the trauma it and your body went through. If stil in doubt and for peace of mind, you can seek another opinion who may rule it out too.
Give it some time and take a deep breath.

With prayers

 

[terodac]

Welcome to the new world we all have here! You will get a lot of really good information here simply because we have walked the walk! You are well on your way to recover, sometimes you have to stay on nurses and doctors, remember you are paying them. So hang in there take it slow and recover, go to rehab if you can. Take it slow and listen to your body. Toprol XL is a good drug for help with migranies, but is is also a blood pressure and heart drug as well, I have not had a headache sense my surgery and I take it everyday. I did however had problems with my vision, and it is a lot worst sense my surgery. Sounds like we have had about the same surgery. Just passed my two year date! YEA! although this week I am having skips in my heart beat, I think it is just stress a little during the holidays. Take Care ! Welcome to our new world!

 

[Lisa in Katy]

I'm not sure exactly what optical migraines are, but the blurred vision sounds like something that I have that the doctor attributes to TIAs. I had them fairly frequently right after my surgery, but now only once or twice a year. What happens is that my vision gets blurry and it is like I am crossing my eyes. I can cover one eye and see just fine with the other, but with both, I can't see.

Anyway, welcome to our world. Things will get better with time and suddenly you will find yourself 10 years out like I am. People shortly out of surgery will mention issues and I will think, "Oh yeah. I had that." but if they hadn't mentioned it, I never would have remembered.

 

[Lionheart]

Hi Aaron,
Welcome aboard! Are you doing cardiac rehab? If not, I encourage it and I think will help your body recover and heal from the trauma of surgery and help with heart rate issues.

You said you had a Cardio at Duke before moving. Are you a native Tarheel by chance? I'm originally from that area.

Take care,
John

 

[ALCapshaw2]

As you can tell from the above responses, your symptoms are fairly common after OHS.

It would he interesting to know how your "Visual Migraines" presented themselves as several different symptoms have been reported by members such as a gray cloud, kaleidoscopic patterns, double vision, etc.
Optical Migraines typically go away after less than an hour, often in 15 or 20 minutes.

Whenever I experience an Optical Migraine, I chew a full (325 mg) aspirin 'just in case'. My Cardiologist supports this protocol.

Regarding your 'Pounding Heartbeat', did you have Aortic Stenosis? Do you recall your 'Effective Valve Area' before surgery?

It is NOT uncommon to experience a pounding heartbeat if your heart muscles were previously conditioned to pumping through an narrow valve opening. It can take several weeks for the heart to 'readjust' to your new valve.

MANY of us experienced an elevated Heart Rate following surgery. Again, it should return to normal after several weeks. Daily Walking helps to bring this issue back to normal. Cardiac Rehabilitation is a GREAT Help if your insurance will cover it. If not, visit a Cardiac Rehab facility and watch what they do. You may even be able to get a copy of their recommended exercises from one of the nurses.

Good Luck with your recovery!

'AL Capshaw'

 

[hall]

Just wanted to pop in and say hi and welcome. Hope things go better for you very day.

 

[Cooker]

Welcome to the zoo ... you have come to the right place...wishing you the best on the 10th........