Waiting to see the Dr at Mass General...

[MrMayor]

Hi all, I'm new here, found the site a couple days ago. I've been waiting to go see the doctors at Mass General this coming Wednesday (3/19)

I'm 55 and have a BAV (oh, look I've picked up some of the terms - grin), I have a murmur that has been followed for 30 years. I've been seeing my cardiologist every year (Hi, let me listen, how you feeling, see you in a year) Last July I had a echo and when I met my cardiologist after he decided he wanted me to have a CT scan cause he didn't like a number. So I had the CT scan and he called me back and said 'I want to see you in six months instead of a year and I want you to have another CT scan."

At that point I knew something was in the works. So I saw him in January and he scheduled the CT for the beginning of February. I had the CT on a Thursday and when he called on Friday, my first thought was 'Oh ****!' (I've been around long enough to know the longer it takes to hear about the results of a test, the better)

I have an AAA which went from 4.1 cm 18 months ago to 4.7 in July to 5.1 in February and so I've won a trip to Boston to meet with Dr Issalbacher.

My endurance has dropped in the last 6 months even more so in the last couple of weeks, but since I heard about my trip to Mass General, my sleep has also been poor. On recommendations from my GP, I've been using Tylenol PM to help me sleep, so I don't know if the tiredness is sleep or heart related.

One question I have for you all is this: Has anyone had a feeling of pressure under the ribs on the left side of your chest. This started a couple days ago and just wanted to know what people have felt, Other than the tired and this slight pressure, I feel fine. Thanks in advance.

Paul

 

[Susan BAV]

Hi Paul -

Welcome. It's a very helpful site for information, isn't it? Glad you found it pre-op. You may already have read this in your searches here; but it seems that as a valve get worse, its decline tends to accelerate.

I don't know about your pressure question, though perhaps someone else here will have an idea--something about that rings some worry bell in my head though, perhaps because you mentioned how quickly the aneurysm may be developing now. You mentioned AAA but I kind of assumed you didn't mean an abdominal aortic aneurysm, did you?

Some days are a little slower here for replies than other days so don't hesitate to add a post to bump this thread back up the list if it starts slipping down too quickly.

Oh, one more thing... there is another website, with a lot of information particularly in regard to bicuspids, on which you may find more helpful information: www.bicuspidfoundation.com

Hope all goes well for you. Take care and post again.

 

[Phyllis]

Welcome, Paul. I too am glad you found us before surgery. You are going to a great hospital and I'm sure Dr. Issalbacher will fix you up just fine. There have been many here who have had surgery at Mass General so you might want to do a search for "Mass General" and for "Dr. Issalbacher". I can't help you with your question regarding the pressure under the ribs, but I'm sure someone will chime in soon. After your appt. with the surgeon, please let us know your surgery date so we can add you to the calendar and cheer you over the mountain. Best Wishes,
Phyllis

 

[Ross]

I didn't feel any pressure until just before rupture. If your feeling pressure, I'd step it up to get to the Doctor.

 

[Superbob]

I don't know specifically about the pressure you describe, but given the pace of increase in the AAA you describe, I would tell the doctor about it right away, just to be safe. Wishing you the best -- your history sounds similar to mine, and it certainly sounds like the time to get it corrected is drawing near.

 

[brd]

Paul, You've probably gotten the message by now that many here think you should call the doc now. I will add mine to that. They may want to see you before Wed. I've heard great things about Dr I. so you will be in great hands in an excellent hospital. Take care, Barbara

 

[Jkm7]

Hi Paul, Welcome. Very happy you found us.

I can't help you about your AAA but want to reassure you if you have any hesitations about Mass General.

I had my second OHS there two weeks ago and the care was outstanding. If there are better cardiac surgical nurses anywhere, I can't imagine. I had amazing care both visits. MGH is always rated among the best on all the surveys of Cardiac Care.

Sorry you have to go through this but do so with full confidence in the institution you have chosen.

 

[BDMc]

Welcome

Welcome

Paul, Glad to have you aboard, though I'm sorry for your problem. I agree with Ross about expediting things. Aside from that, I'm local, so if you ever want to talk send me a PM and I'll give you my number. Sounds like you have some good docs. Keep them informed of any/all symptoms. When I had my aneurysm, I had sharp stabbing chest pains. They would frequently wake me if I slept on my left side. The doctors all insisted the the pain was unrelated. I haven't had it since my surgery... So if you have discomfort/symptoms consult the docs, and press them for a solution. All the best, Brian Mc

 

[susieq14]

Hello Paul and Welcome to VR.com!

I don't know much anything about your health problem because I have a problem with my mitral valve so I can't answer your questions but I did want to send you a warm welcome especially since we are from the "same neck of the woods" so to speak. I hope that you get some good answers here as you prepare for your big visit with Dr. I and your eventual surgery.

Take Care!

 

[kchristian]

Bav + Aaa

Bav + Aaa

Paul,

I had surgery to replace a BAV bicuspid aortic valve and repair an AAA ascending aorta aneurysm (my mother had the same combo). I did not have any symptoms (very fortunate). My mother had symptoms of tiredness for about 2 weeks and by the time she went to the first hospital they told her she had a kidney infection (NOT). My BAV was being monitored (for years) and it was only when the aneurysm came into view (echo) did I get scheduled for surgery. The AAA was 5 cm and I was told that that size plus the valve issue made me a candidate for surgery (Kaiser Permanente in Southern California). Otherwise I was told that they would have waited until an aneurysm was 5.5 cm to proceed. The advice here so far has been to contact your doctor NOW (call their service and relay the symptoms you have) and I definately concur. Let him/her decide how to proceed. Even if the symptoms you've experienced are stress related you should relay them to the people entrusted with your care. They may want to have you checked out right away or see you on Monday. The tricky thing about an aneurysm is that you never know its timetable. In the meantime take a deep breath and try to relax as best you can. Be sure to tell someone close to you what is going on inside and to check in on you if possible. Worry is not your friend.

Hoping & praying for the best outcome....

 

[MrMayor]

Thanks for all the wonderful replies and sorry for not getting back to everyone, but I was tied up at the ER.

Sunday morning I wok at 3 AM with some pin pricks on the side of my chest. The only lasted a moment and I kept wondering if I imagined them. But after a couple minutes and feeling the pressure, I decided to wake my wife for a trip into MGH's ER.

One good thing is that at 3 AM there is no traffic on the roads. They took me very seriously and I ended up having a CT scan and then they transfered me to the ER Observation Unit. The CT showed no dissection, which was the major worry.

So I spent the day in the Observation Unit and they decided to give me a stress test first thing Monday morning. So I had a 'lovely' night sleep (fall asleep at 9:15, room change at 10, automatic blood pressure cuff at midnight, a nurse visiting the patient next to me at 1:30, auto blood pressure cuff at 4:00 - it fails and alarm goes off, awake till 5, fall asleep, get woken at 6:30 cause my stress test is first....)

Good news it that I passed the stress test and they have sent me home, but I be back in on Wednesday to see Dr issalbacher.

So that was my weekend.

 

[Susan BAV]

They took me very seriously and I ended up having a CT scan and then they transfered me to the ER Observation Unit. The CT showed no dissection, which was the major worry.

So I spent the day in the Observation Unit and they decided to give me a stress test first thing Monday morning...Good news it that I passed the stress test and they have sent me home, but I be back in on Wednesday to see Dr issalbacher.

So that was my weekend.

And what a weekend that was .

I'm glad your stress test came out okay... I'm certainly no doctor... But I'm surprised you were given a stress test when you have a growing 5.1 aneurysm and were admitted to the ER with a suspect dissect issue. If that was inappropriate for me to say that, sorry; and I'm sure someone here will let me know ... And what's done (the stress test) is done...

But please take it easy and be sure and mention that test to your surgeon, in case the results haven't been delivered to him. Take care and please post again.

 

[alpha 1]

surgery

surgery

hi,
good luck and you are in my prayers.
alpha 1

 

[MrMayor]

Wow, good news...for now

Wow, good news...for now

Wow, good news...for now. I am not looking at surgery in the immediate future, looks like it will be 3+ years from now.

The reason I was sent in is that the measurements taken at my last CT scan was read as 5.1, however Dr Issalbacher at Mass General said that it's all in the direction that you measure. Think of a cylinder that's 8 inches high and 4 inches wide. If you measured it exactly side to side, you would get 4 inches, but if you tip the cylinder a little bit, the measurement you think is side to side could be a off angle slice and it could measure say 5 inches.

So he reads it as still at 4.7 and there is room for it to grow before surgery is recommended. And it will continue to grow, but it grows slowly. So for now, I'm to keep on doing what I'm doing. I'll go back in a year and have them re-measure and I'll be re-evaluated.

And I now feel a whole lot relieved. Thanks for everyone thoughts, prayers and advice. I'll be watching this site and good luck to everyone else.
Paul

 

[Phyllis]

That's good news, Paul. Don't be a stranger. Drop in and let us know how your are doing.

 

[marie]

Great news but please don't leave us stick around.
Earline