Fear of Dissection in Rural Ohio

[Kate]

Hi! I'm a new member with aortic stenosis and a 4.7cm aorta. My Dr. wants to wait for surgery, which is basically good, but I'm afraid of even the rare chance of dissection or rupture because I live in a very small town that doesn't have a cardiologist and the closest hospital capable of performing heart surgery (even the most basic) is over an hour away. We have a small hospital in town (mostly for setting broken bones and delivering babies) and I'm thinking about working with my primary physician to flag my chart in the emergency room and include specific directions about how to get me stabilized and transported quickly in case of emergency. Part of what is difficult is that I don't really have a good sense of what the chances of dissection are (am I worrying about something that is never going to happen?) I'd appreciate any suggestions you may have (finding this website has been a big comfort to me already, reading previous threads about valve choices, surgery etc.) Thanks! Kate

 

[Mary]

Hi! I'm a new member with aortic stenosis and a 4.7cm aorta. My Dr. wants to wait for surgery, which is basically good, but I'm afraid of even the rare chance of dissection or rupture because I live in a very small town that doesn't have a cardiologist and the closest hospital capable of performing heart surgery (even the most basic) is over an hour away. We have a small hospital in town (mostly for setting broken bones and delivering babies) and I'm thinking about working with my primary physician to flag my chart in the emergency room and include specific directions about how to get me stabilized and transported quickly in case of emergency. Part of what is difficult is that I don't really have a good sense of what the chances of dissection are (am I worrying about something that is never going to happen?) I'd appreciate any suggestions you may have (finding this website has been a big comfort to me already, reading previous threads about valve choices, surgery etc.) Thanks! Kate

Kate,
First of all, welcome to the site. When you say your doctor wants you to wait for surgery, do you mean your Family Practice doctor, your cardiologist or perhaps your cardiothoracic surgeon (if you've found one)?

Some members have had a dissection, and hopefully they will chime in anytime now to tell of their experience. They could speak to your odds of having one much better than I or anyone else.

I know that other members are pondering the same question about flagging their charts in the event of an emergency-- PJ in particular. However, I think a conservative approach to take is PREVENTION. I would ask your doctor what he thinks you should do in case the anuerysm dissects, and perhaps he will reconsider his advise to postpone surgery.

Anyway, I'm glad you've joined us, and I hope you read all you can, so you can make informed decisions on your care.
Mary

 

[Kate]

Thanks Mary!

Thanks Mary!

Thanks for the warm welcome, Mary. It is so helpful to have the chance to (virtually) speak with others going through similiar issues. My cardiologist has suggested waiting because I'm fairly young (38) and he's concerned about the chances of multiple surgeries. I'm going to the Cleveland Clinic and they seem to have lots of experience there, but I'm having some difficulty communicating with my Dr (not all his fault, there is a language barrier, but also I get nervous and intimidated). Kate

 

[ALCapshaw2]

Welcome to our world Kate!

One of our members made an astute observation and comment: "When you have a condition that can ONLY be repaired by Surgery, get a SURGICAL opinion".

Too many Doctors (including cardiologists) like to postpone surgery until the last possible moment. Having gotten to surgery 'just in time' I strongly disagree with this type of thinking.

If you do not have a Cardiologist, you need to find one and then either request a recommendation and referal to a Surgeon or begin your own search for a surgeon.

There are several Heart Hospitals in the Columbus / Cincinnati / Dayton area. The #1 rated Heart Hospital in the USA (if not the world) is right there in OHIO at the Cleveland Clinic.

If dissection / rupture is an issue, you should see someone who has considerable experience in this type of corrective surgery. These kinds of surgeons are typically found at the MAJOR Heart Hospitals.

Even if your condition does not warrant immediate surgery, it is best to "BE PREPARED" by having a surgeon you trust lined up for when the time comes. IMHO, it is best to let the SURGEON determine the best time to operate.

'AL Capshaw'

 

[perrybucsdad]

... but also I get nervous and intimidated). Kate

Kate, Welcome!!

First off, don't get nerveous and intimidated! You must ask questions, and most doctors understand that. You are the steward for your body and in some instances, you might be the only one fighting for your well being. That's not to say nobody else cares, but they may have many other concerns as well, and yours may get overlooked.

I don't know too much about disection, other than I had one but it never ruptured. My doc was fairly concerned that I get may valve, root, etc all replaced fairly quickly.

Did your doctor give you any measurements of your heart?

- John

 

[Kate]

Did your doctor give you any measurements of your heart?

- John[/QUOTE]

No, although I think this is because he hadn't really had a chance to look at all my test results when I met with him, so I'm hoping to receive a more detailed report in the mail. Basically, what he said to me was "Your aorta looks bad, your valve looks bad. Come back in six months and if you experience crushing chest pains before then, go to the emergency room." I really understand that they are busy, but this wasn't very reassuring! Kate

 

[jax3172]

Get theee to Clev. Clinic

Get theee to Clev. Clinic

Easy bottom line here: get to the Clev clinic at the soonest. They are just about the best!

 

[ALCapshaw2]

Obviously you have had some kind of evaluation. Did you have an Echocardiogram? If so, request of copy of the report and keep your own file. (actually it is a good idea to request copies of ALL your test results/ reports).

There is information in the RESOURCES Forum on interpreting test results.

'AL Capshaw'

 

[Mary]

Did your doctor give you any measurements of your heart?

- John

No, although I think this is because he hadn't really had a chance to look at all my test results when I met with him, so I'm hoping to receive a more detailed report in the mail. Basically, what he said to me was "Your aorta looks bad, your valve looks bad. Come back in six months and if you experience crushing chest pains before then, go to the emergency room." I really understand that they are busy, but this wasn't very reassuring! Kate[/QUOTE]

Kate,
I am greatly relieved to hear you're getting an appointment with Cleveland Clinic. I would really try to get in as soon as possible. That's the place you need to be. Whatever they advise you, it will be excellent advice!
Mary

 

[perrybucsdad]

Obviously you have had some kind of evaluation. Did you have an Echocardiogram? If so, request of copy of the report and keep your own file. (actually it is a good idea to request copies of ALL your test results/ reports).

There is information in the RESOURCES Forum on interpreting test results.

'AL Capshaw'

Excellent advice AL!! I have copies of everything going all the way back to when I was 3 in my fire safe. Makes for fun reading too.

Everyone remember, those medical records are yours and you have the right to look at them anytime you want and to get copies. You may have to pay for the copies, but it's a good investment to make.

- John

 

[DebbiN]

Have to disagree on this

Have to disagree on this

Welcome to our world Kate!

One of our members made an astute observation and comment: "When you have a condition that can ONLY be repaired by Surgery, get a SURGICAL opinion".

Too many Doctors (including cardiologists) like to postpone surgery until the last possible moment. Having gotten to surgery 'just in time' I strongly disagree with this type of thinking.

If you do not have a Cardiologist, you need to find one and then either request a recommendation and referal to a Surgeon or begin your own search for a surgeon.

There are several Heart Hospitals in the Columbus / Cincinnati / Dayton area. The #1 rated Heart Hospital in the USA (if not the world) is right there in OHIO at the Cleveland Clinic.

If dissection / rupture is an issue, you should see someone who has considerable experience in this type of corrective surgery. These kinds of surgeons are typically found at the MAJOR Heart Hospitals.

Even if your condition does not warrant immediate surgery, it is best to "BE PREPARED" by having a surgeon you trust lined up for when the time comes. IMHO, it is best to let the SURGEON determine the best time to operate.

'AL Capshaw'

Got to disagree here and add my comment. The first paragraph where you state when you have something that can ONLY be corrected by surgery, get a surgical consult...well, first off, how does one know that only surgery will help them and secondly, think about it- what does a surgeon do? Surgery! How does he make his living? Surgery! If he didnt have anyone to operate on, how would he make his living? I have had multiple surgeries and tons of second opinions. The non surgical doctors are way more conservative about jumping in to going under the knife, but as soon as I see a surgeon for the condition, he has the surgery scheduled so fast my head spins. Sorry folks, I think that seeing a surgeon should be last on the list. See cardiologists, internists, even psychologists first, surgeons last!!

 

[ALCapshaw2]

Got to disagree here and add my comment. The first paragraph where you state when you have something that can ONLY be corrected by surgery, get a surgical consult...well, first off, how does one know that only surgery will help them and secondly, think about it- what does a surgeon do? Surgery! How does he make his living? Surgery! If he didnt have anyone to operate on, how would he make his living? I have had multiple surgeries and tons of second opinions. The non surgical doctors are way more conservative about jumping in to going under the knife, but as soon as I see a surgeon for the condition, he has the surgery scheduled so fast my head spins. Sorry folks, I think that seeing a surgeon should be last on the list. See cardiologists, internists, even psychologists first, surgeons last!!

It's a good thing that you don't have an aneurism at 5 cm or a permanently enlarged heart, or a valve that is on the verge of "falling apart in the surgeons hands" as has happened to several of our OTHER members..

'AL Capshaw'

 

[Karlynn]

Got to disagree here and add my comment. The first paragraph where you state when you have something that can ONLY be corrected by surgery, get a surgical consult...well, first off, how does one know that only surgery will help them and secondly, think about it- what does a surgeon do? Surgery! How does he make his living? Surgery! If he didnt have anyone to operate on, how would he make his living? I have had multiple surgeries and tons of second opinions. The non surgical doctors are way more conservative about jumping in to going under the knife, but as soon as I see a surgeon for the condition, he has the surgery scheduled so fast my head spins. Sorry folks, I think that seeing a surgeon should be last on the list. See cardiologists, internists, even psychologists first, surgeons last!!

I certainly agree with your point, in general Deb, but upon initially reading Kate's measurement of 4.7, my first thought was - girl needs to see a surgeon. 1st time I saw my surgeon he turned me down and I was very upset because I wanted fixing and fast. I'm sure you won't argue that someone with a severely leaking or stenotic valve can only find a "cure" through surgery. There just isn't any alternative. Medication may help forestahl continued damage on moderate valve problems, but as it gets worse you have 2 options, surgery or death.

Welcome Kate ! How's that for a cheery welcome post. I sense that you know what you need to do. And I'm glad you've already taken steps forward. Some Dr.'s like to wait until 5.0 to operate (some crazy ones even wait past that), but the general opinion here is that your mearsurement is at a stage where surgery certainly needs to be looked into. And living in Ohio puts you in the same state that has the Valhalla of Heart Hospitals - Cleveland Clinic.

Keep posting, searching and asking questions. We are not a shy group here.

 

[PJmomrunner]

Debbie:

In general, I wholeheartedly agree with you and believe that if you go to a neurologist with a back problem he will likely find a nerve problem, while an orthopedic surgeon will find a bone problem and chiropractor will find a need to adjust your bones!

HOWEVER, when the accepted medical convention is to operate on an ascending aortic aneurysm when it reaches 5cm if associated with a BAV (or some even say 4.5cm) or 5.5cm if it is associated with a normal TAV, and one has an aneurysm of 4.6cm or 4.7cm, and no one knows how long it will take one's aneurysm to get to the "operable" size, it makes a good deal of sense to start looking for a surgeon to trust BEFORE one actually has dire need of his services. This is perhaps particularly true if one feels rather distrustful of surgeons.

Incidentally, for what it's worth, I'm in your same boat (BAV w/4.5cm) and all three surgeons I've consulted have told me to wait and watch every six months it's not yet time to operate. Also, I ask, how does a cardiologist make his money? Running tests, placing stents, doing TEE's, etc..., right?

Got to disagree here and add my comment. The first paragraph where you state when you have something that can ONLY be corrected by surgery, get a surgical consult...well, first off, how does one know that only surgery will help them and secondly, think about it- what does a surgeon do? Surgery! How does he make his living? Surgery! If he didnt have anyone to operate on, how would he make his living? I have had multiple surgeries and tons of second opinions. The non surgical doctors are way more conservative about jumping in to going under the knife, but as soon as I see a surgeon for the condition, he has the surgery scheduled so fast my head spins. Sorry folks, I think that seeing a surgeon should be last on the list. See cardiologists, internists, even psychologists first, surgeons last!!

 

[DebbiN]

Actually..

Actually..

It's a good thing that you don't have an aneurism at 5 cm or a permanently enlarged heart, or a valve that is on the verge of "falling apart in the surgeons hands" as has happened to several of our OTHER members..

'AL Capshaw'

I have a 4.9 cm aneursym, enlarged heart, 1st and 2nd degree AV block with conduction system disease, a pacemaker with defib, bicuspid aortic valve with moderate regurg, and moderate aortic insufficiency, and internal carotid blood clot, blood clot in my lung and one on my pacer lead. I also have atrial fibrillation and take 14 mg of Coumadin a night. BUT I am controlled with medication, and see my doctor every week. Well actually since I work for one of my doctors, every day except Sat and Sun. I get a CT scan every month and TEE every 3 months. I had a consult today with a physician at Duke, have had 2 other consults and they all say if I continue with being monitored like I am, I am still in the elective stage. How can so many professionals be wrong? But the one surgeon I have seen was ready to cut the next day if I would have let him. I am sorry but IMHO it makes a person wonder. I have been in the medical profession a long time so maybe I am more leery. Who knows. This is just my opinion.

 

[ALCapshaw2]

Debbi =

I hope you have a SURGEON on SPEED DIAL so that when your 4.9 aneurism BURSTS you can get to the table on time. I believe Ross's aneurism burst at 4.7 cm.

The Surgeon vs. Cardiologist debate has been going on for a LONG time and is well documented in the archives of VR.com. SEVERAL of our members got to surgery "just in time", some reported valves that literally disintegrated in the surgeon's hands, and several have had PERMANENT damage to their heart muscle / walls due to prolonged enlargement compensating for ever smaller valve areas as their stenotic valves closed off.

Buy hey, if you want to wait and see how long you can go before YOUR aneurism bursts, who are we to stop you. Would you add a note to your Medic Alert info to post to VR.com providing the details of when your heart failed, just of informational purposes only. (Sarcasm intended)

'AL Capshaw'

p.s. FWIW, I've had Bypass Surgery and Aortic Valve Replacement (taken to hospital by ambulence 2 days before scheduled surgery). My Mitral Valve is closing off. NEW surgeon (long story) told me when my quality of life deteriorated to an unacceptable level to come in for replacement (NO RUSH). He also indicated that there was a LOW risk of sudden death for this MITRAL valve problem, UNLIKE the Risk of Sudden Death with Aortic Stenosis and / or Aneurisms.

End of Sermon

 

[RCB]

Second opinion

Second opinion

Kate,
Althought, there is no doubt that Cleveland Clinic is the best in Ohio,
Riverside in Columbus is a pretty good heart hospital and is more closer to you. I'm sure they could offer you a good opinion. You will be fine

Hi! I'm a new member with aortic stenosis and a 4.7cm aorta. My Dr. wants to wait for surgery, which is basically good, but I'm afraid of even the rare chance of dissection or rupture because I live in a very small town that doesn't have a cardiologist and the closest hospital capable of performing heart surgery (even the most basic) is over an hour away. We have a small hospital in town (mostly for setting broken bones and delivering babies) and I'm thinking about working with my primary physician to flag my chart in the emergency room and include specific directions about how to get me stabilized and transported quickly in case of emergency. Part of what is difficult is that I don't really have a good sense of what the chances of dissection are (am I worrying about something that is never going to happen?) I'd appreciate any suggestions you may have (finding this website has been a big comfort to me already, reading previous threads about valve choices, surgery etc.) Thanks! Kate

 

[Karlynn]

I have a 4.9 cm aneursym, enlarged heart, 1st and 2nd degree AV block with conduction system disease, a pacemaker with defib, bicuspid aortic valve with moderate regurg, and moderate aortic insufficiency, and internal carotid blood clot, blood clot in my lung and one on my pacer lead. I also have atrial fibrillation and take 14 mg of Coumadin a night. BUT I am controlled with medication, and see my doctor every week. Well actually since I work for one of my doctors, every day except Sat and Sun. I get a CT scan every month and TEE every 3 months. I had a consult today with a physician at Duke, have had 2 other consults and they all say if I continue with being monitored like I am, I am still in the elective stage. How can so many professionals be wrong? But the one surgeon I have seen was ready to cut the next day if I would have let him. I am sorry but IMHO it makes a person wonder. I have been in the medical profession a long time so maybe I am more leery. Who knows. This is just my opinion.

Hi Debbie,
This is just an observation, and most definately not a criticism (Just wanted to clear that up since some topics lately on VR have been a bit contensious. ) I'm wondering if the average patient would be able to get the extremely close observation that you get, or how many people would have patience enough to put up with weekly doctor's visits (or insurance companies for that matter). Some people have to go to doctors that are an hour or two away, so for them, weekly visits would be an all day event. I think you are in a very unusual position with you working for the doctor that cares for you. I don't think most heart patients could come close to the type of monitoring that you are fortunate enough to have, without it greatly affecting their quality of life. (Travel times, waiting times, waiting on phones for answers etc.)

You have so many issues going on, is there some all-inclusive dx that you've been given? Is there a complicated genetic issue? I guess I would be hesitant to go under the knife as well, if I had your complications and I'm glad you work where you can have a close eye kept on you. I'm sure that gives you confidence that's priceless.

Best wishes.

 

[DebbiN]

Follow up

Follow up

Al- I love a good discussion, thanks for that! LOL
There wont be any need for anyone to contact the board, I will do it after I have had my elective surgery in November or December when I am ready for it. Remember we all have choices. This one is mine.Why be sarcastic when someone disagrees with you????
PJmomrunner: I do have some complicated issues, dont I? You know I have been like that all my life! I had breast cancer at the age of 24, with 18 of the 18 lymph nodes involved, which meant that the cancer had spread. So had a mastectomy, then a month later, hysterectomy, followed by one year of chemo three times a week and 3 months of continuous radiation. But through it all, I raised my child who was 3 at the time and worked part time. Then after my breast implant 3 years later, during that procedure I almost died from bp dipping dangerously low. Then most recently, last year, I lost consiousness at work, a co worker dragged me into an exam room, took my bp, it was 60/40 with pulse at 25, doc came in, 911 was called and then found out I had to get a pacemaker. 1st and 2nd degree AV block with conduction system disease. Then just within the last few months, had amourosys fugax (temporary blindness) and they found a blood clot. Blah blah blah. So I dont mean to be negative on here, but I think perhaps I am a fighter as I have beat everything that I have been faced with. So to me being monitored for now is better than going under the knife. I have been through so much that I know my body so well, I will know when it is time. Sounds pretty pretentious I know.
And you are right, it is a great situation that I get to see my doc every day. But it shouldnt matter to insurance company how often I am seen. We see folks every week at my office with no payment problems from ins....

I think there are some really brave folks here. I applaud you all.

 

[PJmomrunner]

Kate: I hope you don't feel like your thread was hijacked. I can't add anything to what those who responded to you have already said except perhaps to say that I understand exactly how you feel. I too live in a rural area and fear that if I dissect I probably won't make it. My local cardiologist assures me (erroneously, of course) that aneurysms that accompany BAVs don't dissect, so unless he gets up-to-speed on this issue I can't expect much help from him in devising a survival plan.... My next appt. w/ him is July 5. In the meantime I have emailed the former head of Emergency Services at my local hospital for advice (no response yet) and I wear a Medic Alert bracelet and cross my fingers. I'd love to hear your plan once you've devised one.

Okay Debbie...this was your post a week ago:

"Newbie with multiple problems

--------------------------------------------------------------------------------

Hello, I am so glad I found this forum. I have a bicuspid aortic valve and 4.6 ascending aortic aneursym. Recently had a bout of amourosis fugax (temporary blindness) that resulted in finding a blood clot in my right internal carotid artery, which has now resolved with Coumadin 14 mg per night. Two years ago had 1st and 2nd degree AV block and had to get pacemaker. A recent TEE showed I also have a blood clot on one of my pacemaker leads. I have normal to sometimes low blood pressure and all beta blockers and calcium channel blockers have always made me feel so badly, sometimes with nightly episodes of passing out because my bp goes so low. So I was not on, until last Friday, any kind of heart meds, I am now on propanolol. Giving it a try, it is a beta blocker that i take at bedtime. Anyway, my cardiologist wants me to start thinking again of having the heart valve/aneursym surgery. I had been told about a year ago that within the next 5 years I would need the surgery. Now they want to do it way sooner. I have been having mild angina recently and horrible fatigue and dizziness. No energy at all, and bouts of depression.
I was wondering if anyone here has had that surgery. I am really scared of it for some reason, even though I have had major surgeries in my lifetime. I had breast cancer at the age of 23 and had to have a mastectomy then 3 months later, a total hysterectomy. I have also had partial thyroidectomy and 2 reconstructions.
I am glad to have found you all! I am trying to get a second opinion at the Cleveland Clinic for all this."

This is one of those "tough love" -type questions: Are you trying to fool yourself? It's time. Start now, before your situation is an emergency, to find a surgeon you can trust.

All the best,

P. J.