I'm new ~ here's my story

[Michele]

Hello all. I am wanting to share my story.

So, this past summer I went into the ER for a pulminary embolism test. (I've had a history of DVT's) I learned that I had an aneurysm in my ascending aorta. They told me it was 4.2 cm, not small, but not huge either. To follow up with my primary doctor in morning, to consult a hemotologist due to my blood clot history and go from there. I called my primary doc the next day and they wanted to see my vascular surgeon asap.

Well the next day the "official" report came back and it said it was a "prominence" of 3.8 and not an aneurysm. So my primary doc then said to wait to go back to my vascular, but rather, to do a test to see if it grows and go from there. So I accepted that and waited, I went in for a ultrsound to see if it's grown and they only did a scan of my abdomen. I left there asking my husband, why did they only check my abdomen when it's in my chest? And why am I going back to the hospital that told me it was an aneurysm and then told me it wasn't? Talk about emotional! This test came back negative. So here's where I was.

1. Aneurysm, 4.2
2. Prominense 3.8
3. No aneurysm

Needless to say I was left questioning and this just added to my overall stress. Since I had no aneurysm, there was no reason to see my vascular. (she originally said I would after this appointment)

So I made an appointment with my primary doc, gathered all the records and scans, including the wet read from the ER (which she had never seen) and said, explain this to me. I don't understand, but I want to know what's going on with me. Of course I want to do this without seeming like I am over reacting. She looks at it all and I think due to all our questions says...go ahead and go back to your vascular and let me figure it out.

So last week I went. He examined me and got my history and then looked at the films. Came back and said it is an aneurysm of 3.8 and it has dissected. Discussed with me about open heart surgery being the way to fix this particular type of aneurysm and sent me to a heart surgeon. (cardiothorasic).

So, just had another CT scan and then went right to the surgeon. I saw him two days ago. Heart doctor says it is an aneurysm, between 3.8 and 4.2. That there is no need for surgery at this point. Only surgery is open heart surgery. No dissection. Of course we were concerned about this (since the other doctor said I had one) and asked him about it. He said he didn't see one. Then was good enough to bring us to his office to show us the scans. He hadn't looked at the one in July which the other doc had. He said that the scan was done for a PE and the dye was going through the arteries at a different rate than if it was a CT angio. Because of this, it does appear that there is a dissection on that scan. But my current scan is clear. He put me on a beta blocker to get my blood pressure under control. it was high even on my Cozaar. Oh, and he also told me I have a heart murmur. I've never known this at all, ever....

I left feeling at peace and confident. But now am thinking on it more. My husband and I are thinking of getting a second opinion.

Anyone's thoughts. Oh, I am a 45.

Thanks!
Michele

P.S. Another thought. Should I get a cardiologist to manage my care now?

 

[ALCapshaw2]

One of our members (HarryBaby) has complained bitterly about the Heart Care he has received in NH and recently went to Boston to be evaluated.

If you are looking for another opinion, Mass. General Hospital and Brigham and Women's Hospital in Boston are both Very Highly Regarded Heart Hospitals.

'AL Capshaw'

 

[john79t]

Hey Ross why don't you tell her your waiting story.

 

[hall]

Hi Michele and Welcome. I would not hesitate to get a second opinion. You have really had the run around. Hope you get some help.

 

[Michele]

One of our members (HarryBaby) has complained bitterly about the Heart Care he has received in NH and recently went to Boston to be evaluated.

If you are looking for another opinion, Mass. General Hospital and Brigham and Women's Hospital in Boston are both Very Highly Regarded Heart Hospitals.

'AL Capshaw'

Hi,

Thanks. I was overseen in Portland, Maine.

I was considering Mass General and also, the Clevland Clinic, as ideas.

 

[Michele]

Hey Ross why don't you tell her your waiting story.

I welcome all stories.

 

[Michele]

Hi Michele and Welcome. I would not hesitate to get a second opinion. You have really had the run around. Hope you get some help.

Hi Hall,

Thanks! It's stressful just dealing with this.

 

[catwoman]

Michele:

You definitely need a cardiologist!

 

[Mileena46]

I am with Marsha, you need to start by seeing a Cardiologist. He/she will guide you through what you need to do. I would have really hated to face my heart surgery without my Cardio! He can suggest a surgeon if you need one, and he will be the one to decide when you need one! Look around and find one that you really like and trust, and then if you want get a second opinion with another Cardio! Good Luck! Try to relax. It hasn't been that long ago that all of us faced what you might be facing, and I remember how very very very scared I was. I think we all go through this for a reason. I know you will be fine....this is just something you have to see about and maybe get taken care of....but you can do it! I care, keep us updated!

Mileena

 

[Fundy]

Michele, what type of follow-up proccedures did you have after diagnosed DVT. Did you ever have any symptoms with them.

I'm asking because I had one show up in a leg on a bone scan in Dec08 that mentioned was consistent with a previous CT scan in May08, which I thought was only on my chest. Doc said since I had no symptoms of pain or swelling there wasn't really anything to do but hope it goes away. If pain or swelling occurs then I'd need surgery to remove it.

I asked pharmacist about it and she said didn't know what he could prescribe for it but maybe try aspirin. From my net research apparently aspirin good for artery clogs, but no proof helping veins. But untreated DVT's have a 25% chance of going to lungs.

So I'm still kind of wondering if 25% number is true, why I wouldn't get prescribed some type of anti-coagulant. Or why wouldn't the Doc at least try to find out why the DVT occurred and some prevention.

Maybe doing nothing is appropriate, I don't know. But just wondering what your experience was anyway.

 

[Michele]

Ok thanks, I thought I'd need a Cardiologist, but neither the cardiothorasic surgeon nor my PCP have suggested it. Seems like I'd want someone to help me through this process.

I did have a vascular surgeon say I need to see the cardiothorasic surgeon. But the surgeon is a surgeon and doesn't monitor your care.

I am doing my best to relax. I didn't have an issue waiting the first 6 months, it's the confusion it seems to me to get a clear answer that's a bit unnerving.

I definitely think we all go through things for a reason and I am thankful for it, just the same. I've learned so much about myself in the past few months it's been amazing.

Thanks Catwoman (who I am guessing is Marsha) and Mileena.

 

[Michele]

Michele, what type of follow-up proccedures did you have after diagnosed DVT. Did you ever have any symptoms with them.

I'm asking because I had one show up in a leg on a bone scan in Dec08 that mentioned was consistent with a previous CT scan in May08, which I thought was only on my chest. Doc said since I had no symptoms of pain or swelling there wasn't really anything to do but hope it goes away. If pain or swelling occurs then I'd need surgery to remove it.

I asked pharmacist about it and she said didn't know what he could prescribe for it but maybe try aspirin. From my net research apparently aspirin good for artery clogs, but no proof helping veins. But untreated DVT's have a 25% chance of going to lungs.

So I'm still kind of wondering if 25% number is true, why I wouldn't get prescribed some type of anti-coagulant. Or why wouldn't the Doc at least try to find out why the DVT occurred and some prevention.

Maybe doing nothing is appropriate, I don't know. But just wondering what your experience was anyway.

Fundy,

For my DVT's I had to be on a protocol of one week bedrest, (total bedrest) and giving myself heparin shots (Lovenox). Then I was getting PT/INR's done almost daily at the beginning and on comudin, wearing a compression stocking to help the blood circulate and monitor how long I sit/stand. I was under the care of a vascular surgeon for this.

I am off the comudin for now, but wear compression stockings for the rest of my life due to valve damage, and take a baby aspirin.

My blood clots were diagnosed with doppler ultrasound, I've never heard of a doctor leaving a clot alone, ever. Some doctor's think you don't need to treat DVT's since they are so far from your heart, above the knee is a different story. But I was glad that my mine did, since it kept coming on back. Now I have permanant damage because of it.

I'd find someone who will treat them, but that's my experience.

Michele

 

[river-wear]

Hi Michele - welcome. Get a good cardiologist to monitor and guide your care. Maybe a TEE would help answer the dissection question. That doesn't seem like something you want to just "wait and see" about.

 

[Herburban1]

Welcome Michelle, I live in Central Mass. and am followed by the heart center at Mass General..They are awesome there, everything under one roof. Each Dr. is highly specialized to the point one of the nurses kidded with me saying that the nurses say some Drs. only operate on right or left sides.

 

[Ross]

Hey Ross why don't you tell her your waiting story.

I PM'd it to her.

 

[Michele]

Hi Michele - welcome. Get a good cardiologist to monitor and guide your care. Maybe a TEE would help answer the dissection question. That doesn't seem like something you want to just "wait and see" about.

Thanks. I didn't even know what a TEE was, had to look it up. Good thought.

 

[Michele]

Welcome Michelle, I live in Central Mass. and am followed by the heart center at Mass General..They are awesome there, everything under one roof. Each Dr. is highly specialized to the point one of the nurses kidded with me saying that the nurses say some Drs. only operate on right or left sides.

Thanks. I've been looking at their website tonight. I had a friend recommend the Clevland Clinic because their protocol for surgery is a bit different than elsewhere. But it's a drive of course. Boston is much more accessible for me. How would I go about finding the best doc that specializes in ascending aorta aneurysm?

Is it all who you know?

 

[Michele]

I PM'd it to her.

Got it. Writing ya back.

 

[Lynlw]

Thanks. I've been looking at their website tonight. I had a friend recommend the Clevland Clinic because their protocol for surgery is a bit different than elsewhere. But it's a drive of course. Boston is much more accessible for me. How would I go about finding the best doc that specializes in ascending aorta aneurysm?


Good luck with everything, I can imagine how confusing and over whelming it must be to be told you have something serious, but everyone gives you differnt answers about what is going on.
I agree with everyone you need a good cardiologist to manage your care. IF you do have an annuerysm but it is 4.2 (and not dissecting) chances are it would be a while before you would need surgery. One thing to consider if this is something they will be keeping and eye on for years, with yearly or every 6 month check ups, is you might want to have good doctors a closer than Cleveland, and Boston has some of the best in the world. Then when the time comes IF you need surgery you could decide where you think would be best to could go.

 

[terodac]

See a cardio doctor and until you have a cath done they don't know anything! Mine was different sizes every test until the cath. Good luck! then it was bigger than that during my OHS.