Fear of Dissection in Rural Ohio

[DebbiN]

Follow up

Follow up

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.

First off, I realized I had a typo in my newbie post: my aneursym is 4.9 not 4.6. Ok, nope not fooling myself. Actually trust my doctors. Two internists, three cardiologists that I saw plus one I had phone consult with that saw all my records and films and two surgeons cannot all be wrong! They all say I am in elective stage at this point. I have two steno books worth of questions with answers, morbidity rates of each procedure and of each surgeon I have seen so far, how many times they have done the procedure, etc. Honestly at this point I havent found a surgeon yet that I trust to operate on me. The ones I have seen have been quite cocky and a bit condescinding. So still looking for the one. However, to ease everyones mind, I do have the home and cell number of the best heart surgeon in town and if and when it is an emergency the doc I work for will be called first so he can call Dr. M and we all meet at hospital, which is 2 minutes away!
So nope not fooling myself. Making a choice.

 

[PJmomrunner]

Debbie:

I was just urging you to see a surgeon and NOW you said you have. Good. Great. I misunderstood--thought you had only talked to cardiologists. I'm officially off your back since you're in the process. I'm glad.

P. J.

First off, I realized I had a typo in my newbie post: my aneursym is 4.9 not 4.6. Ok, nope not fooling myself. Actually trust my doctors. Two internists, three cardiologists that I saw plus one I had phone consult with that saw all my records and films and two surgeons cannot all be wrong! They all say I am in elective stage at this point. I have two steno books worth of questions with answers, morbidity rates of each procedure and of each surgeon I have seen so far, how many times they have done the procedure, etc. Honestly at this point I havent found a surgeon yet that I trust to operate on me. The ones I have seen have been quite cocky and a bit condescinding. So still looking for the one. However, to ease everyones mind, I do have the home and cell number of the best heart surgeon in town and if and when it is an emergency the doc I work for will be called first so he can call Dr. M and we all meet at hospital, which is 2 minutes away!
So nope not fooling myself. Making a choice.

 

[DebbiN]

Kate, so sorry

Kate, so sorry

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, lets get back to your concerns. Sorry we got off on a rant. My rant I guess. Anyway, I think working very closely with your primary dr is an excellent idea. Maybe have a small notebook handy for your significant other or whoever will be with you, so they know who to call and what to do in the event of an emergency.

 

[Kate]

Thank you

Thank you

I don't at all feel my thread has been hijacked - I so appreciate that so many of you have taken the time to respond, and I have really enjoyed the combination of kindness and confrontation that you have going on here. I don't know much about this sort of web forum, but I would guess this is pretty special. From both the thread and private messages I feel like I've been able to find the information that I needed to feel in control (as much as possible with something that is essentially out of my control) of my situation. My attitude about this situation has changed radically over the last 24 hours thanks to you! Kate

 

[ALCapshaw2]

Kate AND Debbi -

Just about everybody who comes to VR.com is SCARED. We all are / were, BUT, for (almost?) ALL of us, our chances of going on to live a long and relatively healthy (or at least healthier) life are MUCH better having surgery.

Valve surgery is basically plumbing. When the plumbing needs fixing, call a plumber (SURGEON). After a while Drano (medication) simply doesn't 'get the job done'.

From my own experience and reading MANY stories here on VR.com, Cardiologists tend to like to postpone surgery until the last possible moment. One of their primary 'triggers' is Effective Valve Area. They seem less concerned with chamber dimensions and treat that with blood pressure medication to SLOW (NOT eliminate) the rate of enlargement. The BIG PROBLEM with that approach is that PERMANENT Muscle Damage often results after some point. The Surgeons SEE this problem all the time and that is why they like to operate SOONER rather than LATER, to PREVENT this Permanent Damage.

Debbi, I sense that your fear of surgery exceeds your fear of the very real risks you appear to be facing, including Sudden Death.

Did you ask your Doctors about the tolerance and accuracy of your aneurism measurement? Did you ask them at what threshold they would recommend surgery? I hope that your monitoring keeps you safe, but if I were in your situation, I'd be interviewing Surgeons ASAP, just to 'Be Prepared'. Sometimes Valve Disease can progress VERY FAST. One of the famous VR.com sayings is "The worse it gets, the faster it gets worse". Don't wait too long.

'AL Capshaw'

 

[DebbiN]

Thanks Al

Thanks Al

I appreciate your concern, Al. I am trying to face my fears. I know I will have to have surgery within the next few months. However, my son (my only child) gets married October 1 and I do not want to ruin his day. Now dont say it would ruin his day if I died before from a dissected aneursym! I am going to trust God to keep me safe until after the nuptials.
I am fortunate that I get almost daily care from my docs while at work. I have low to normal bp so that is not a concern. I have never had bp over 120/80 my entire life, it tends to be 100/70 and even a bit lower now because of the Tenormin I am on. So that helps, except of course for being fatigued from low bp. Its always something isnt it? LOL

I promise I will have my surgery before the end of the year!!! LOL

 

[Ross]

First off, I realized I had a typo in my newbie post: my aneursym is 4.9 not 4.6.

Your making me very very nervous. Mine didn't make it to 4.9. It blew at 4.7. I wouldn't wait to get a surgical consult immediately. I know they like that magic number 5.0, but some people such as myself, don't make it to the magic number.

 

[Granbonny]

Kate

Kate

Love your name..That's my little new Russian Granddaughter's name. ( and my middle name }......My wonderful age 50 year old B/I/L...came home from work, 15 years ago..Cook supper..went to bed to read..Thought he had a huge indigestion pain..Sister drove him to rural hospital..They thought the same thing...Waited several hours ..then decided to take him by ambulance to Greenville, S.C...where they fould that he had aneurysm..that had dissected. Only lived for 12 hours..after they tried to do surgery. He had no symptoms before that night. I was lucky..Cath of heart found I had a 5.0..aneurysm . Surgery 3 days later..Been over 3 years now..Doing great.. ..I, too, had NO symptoms.....Take care..Bonnie

 

[Kate]

Does body size affect aorta size?

Does body size affect aorta size?

One of the questions that I can't seem to find an answer for is if aorta size varies based on body size. If, statistically, more men have aortic aneurysms, does that mean that the magic number of 5.0cm is based on the normal sized aorta for men and that women like Debbie and me (I don't know how tall you are, but I'm only 5'3") should actually be operated on at a smaller size? This certainly wouldn't be the first time that science assumed everyone on the planet is at least 6 feet - I put my car seat so far back I can barely reach the pedals because air bags weren't designed to be safe for people my height. Does anyone know about this? Thanks (and happy 4th of July!) Kate

 

[ALCapshaw2]

GOOD Question Kate.

It seems that many (most?) cardiologists like to look only at your latest echo and compare the numbers to their list of "normal" measurements.

Personally, I like to chart all of my echo measurements and look for VARIATIONS. That comes from my Engineering background I guess. It helps to have a baseline set of measurments from before or in the early stages of your circulation problems.

'AL Capshaw'

 

[KathyH]

Hi Kate,
Welcome to our site. It is a great place to learn things and hear different viewpoints. I also had a severely leaking aortic valve and a 4.7 Aneurysm on my ascending aorta. I travel 4-5 times a year and often worried about my aneurym bursting when I was away. At 49 my cardiologist felt I could wait to have my surgery. I decided to get a surgeon's opinion. Dr. Cohn told me that I needed it done within 3 months for two reasons. One was the fact that I was only 5 ft 3 inches and he said that is a huge Aorta for someone my height. The other reason was because my stress test indicated I was not getting enough O2 because of the backflow of blood and he didn't want me to have a heart attack and damage my heart.
As someone else suggested, get copies of your tests and learn what they mean. Find a Dr you are comfortable with . Decide what is best for you. There is alot of information on valve choice here as well.
Good Luck
Kathy H

 

[PJmomrunner]

I'm pretty sure I've seen a formula, but a quick near-midnight search of PubMed turns up nothing. If I remember correctly, it is based on body surface area (BSA) and height together. I find reference to someone named Roman establishing a formula. Maybe you can find it from this info? I'll look too when I get a chance.

One of the questions that I can't seem to find an answer for is if aorta size varies based on body size. If, statistically, more men have aortic aneurysms, does that mean that the magic number of 5.0cm is based on the normal sized aorta for men and that women like Debbie and me (I don't know how tall you are, but I'm only 5'3") should actually be operated on at a smaller size? This certainly wouldn't be the first time that science assumed everyone on the planet is at least 6 feet - I put my car seat so far back I can barely reach the pedals because air bags weren't designed to be safe for people my height. Does anyone know about this? Thanks (and happy 4th of July!) Kate