How soon is too soon?

[Rain]

My cardio?s nurse called this morning to tell me Ryan?s CT Scan showed no change. His condition appears ?stable? at this time. Wonderful!! BUT....she went on to say that, Dr. Andrea still thinks this summer would be the best time for Ryan to have the surgery. Yikes! He wants us to meet with the guy who does heart surgeries in Durango, while Ryan is home for spring break.

We had an echo done when Ry was home for Thanksgiving... they couldn?t see the part of his heart where the aneurysm is. Grrrr... so we were supposed to do a MRI while he was home for Christmas... but Ry is too tall, the machine wouldn?t work on him. So we did another CT Scan instead. I have both CT Scan reports...... they seem a little sparse on details, if you ask me!!

I?m having a really hard time thinking this is what?s best for Ryan. I would feel different if it were a ?have to? thing.

Check out the reports...

_______________________________________________

?CT/CT THORAX ENHANCED done on 5/22/02

INDICATION: Marfan syndrome.

CT of the chest was performed at 2.5 mm slices administering rapid infusion of 100cc of Isovue 370.

There is dilatation of the aortic root to 4.5 x 4.4 cm. The dilatation extends for approximately 3 cm. Beyond this, the ascending aorta, arch, and descending aorta are normal in caliber. There is no evidence of a dissection. The main pulmonary origin is minimally prominent measuring approximately 3.8 cm. Normal opacification of the pulmonary arterial system, however. There is no evidence of mediastinal or hilar adenopathy. There are no pleural or pericardial effusions. The lungs are clear. There is moderate scoliosis with apex tot he right, within the mid thoracic spine. There is a pigeon chest deformity related to this. The lungs are clear. The central airways are normal in caliber. The carotid vessels are normal.

IMPRESSION: Dilatation of the aortic root to 4.4 x 4.5 cm without evidence of a dissection or other complication.
_________________________________________

CT/CT THORAX ENHANCED done on 1/8/04

INDICATIONS: Marfan?s - aortic aneurysm.

CT of the thorax performed with intravenous contrast enhancement, compared to prior studies, May 2002.

The aortic root at the level of the valves measures 4.1 cm anterior to posterior, and also approximately 4.1 cm. transversely. The ascending aorta at the level of the main pulmonary artery measures 3 cm in average diameter. The aorta at the level of the arch measures 2.2 cm transversely. The descending aorta proximally, also measures approximately 2.2 cm in diameter. These values are unchanged from the previous CT evaluation. There is no evidence of dissection.

There are three aortic valve leaflets visualized, and the coronary arteries have a normal origin and orientation. The heart is normal in appearance with no evidence of chamber enlargement. No pulmonary pathology is demonstrated.

IMPRESSION: Chest unchanged from a previous evaluation, May 2002. The aorta at the level of the aortic root/aortic valves measures approximately 4/2 cm average diameter. There is no evidence of dissection. Please see above.
__________________________________________

 

[Granbonny]

Rain

Rain

I feel like Dr. Andrea just wants to see Ryan during his off schedules from school..and probably thinks the summer would give him time to recoup..before school starts again Those little nasty aneurysms can grow so fast...I'm sure he wouldn't want Ryan to wait into the next school year...What does Ry and hubby think?.......If he is a 4.5 now..I think the time for surgery is at a 5 cm. That's what mine was...and I had no symptoms. I know how worried you must be...but we are all here for you and Ryan.. Bonnie

 

[Bill Hall]

Hi Rain - Your posting was pretty troubling for me too. Do you have heart surgery if the condition is so stable? Ryan is young to make this decision and I usually leave it up to the professionals. I think you have to trust Dr. Andrea or get a second opinion. Even then, you are taking risk either way. Good luck to you and Ryan because I am not helpful.

 

[KathyH]

I can only imagine what you are going thru. It is hard enough when you have a health issue with yourself, nevermind when it is your child! I think it is a good idea to talk to the surgeon, since he is the one who does these operations he should know when the right time is. Good Luck.
Kathy H.

 

[Karlynn]

Rain,
What does Ryan want?

I don't envy your position at all. I know you'd probably rather have 100 surgeries yourself if it kept Ryan from needing to have 1. But alas, that isn't the case. Motherhood can really suck sometimes!

I don't want to scare you, but I had a life long friend who's parents and he were waiting for the "have to" for his surgery and unfortunately, he never made it to the "have to" stage. He was 24 when he left us. To ease this piece of information I will also tell you that this was 23 years ago, when technology was not allowing the doctors to see as much of what was going on with the heart.

I'll be praying that you and Ryan are given the most knowledge you need to make the best decision.

And as Bonnie said - we're here.

 

[Nancy]

Hi Rain-

This is such a weighty decision to have to make. Can your doctor give you enough time to have a thorough discussion, to find out why this was recommended at the time it was?

You will certainly be in my thoughts. Deciding for yourself is hard enough, deciding for your child must be so difficult.

 

[Jan]

Hi Rain

I too can only imagine how you are feeling,

My dear friend,

I cannot think of anything helpful to say except

You , Ryan and your family will be in my thoughts and prayers as you make this decision


Love too you all

Jan

 

[fyrfytr]

Hey Rain,
You guys have a very difficult decision to make. If you are uncomfortable with this, you should get a second opinion, this might give you some options.

Ask your Cardiologist about IVUS, I was told by one of the Cardiologists I saw two weeks ago that this is a new procedure that is being used.

You guys are in my thoughts and prayers.
Take Care

 

[hensylee]

Dear Rain - a weighty decision, indeed, is ahead of you all. It must be very painful for you all. I have no advice except to give you my full support and remind you of how tough a mother's job really is. I pray you will have the guidance you need for Ryan. Bless you. Love Ann

 

[fdegranville]

Ryan

Ryan

Hi Rain,

I echo what everyone else has said--It must be so hard. The good news is that you have a very conscientious doctor who is keeping a close eye on Ryan. Maybe once you talk to the surgeon you will feel better about making a decision.

We are all behind you, keep us informed.
fdeg

 

[Heather Fisher]

Rain,

Aren't there any other tests they can do to find out a more definitive size? I'm glad that at least they know it is there and can keep an eye on it. I ditto what the others have said. Ry needs to be a part of the decision. Talk to the surgeon and see what he recommends! I don't envy you and the decision. At least you are going into this armed with a lot more knowledge than many in similar circumstances! You are in my thoughts!
Take care!
Heather

 

[LUVMyBirman]

Hi Rain,

Will be praying for Ryan and your family. Rest assured....the outcome will be a positive one. It's just the "getting there part" You know.

Few of the others brought up some very valid points.
#1 second opinion. PillarPaul sounds like he had a great surgeon in Denver. May want to check him out.
#2 How about a cath to measure the aorta? Would that not be the common practice? You can get the full picture.
#3 If 5.0 is tops. He's close Rain. Please look into this further before summer. College will wait. Were talking about the rest of life!

We all care about you deeply. Please know that I/we will do anything for you.

Take care and please keep us posted.

PS. Dave, what is IVUS? Curious. And Rain.......there are three centers in the US that do non-invasive caths. Two in CA and one right here is Chicago. If you would like more info......will get it for you.

 

[SJJ]

Rain,
I don't have any worthy advice but I want you to know that you'll be in my thoughts as you struggle with this decision.
Sue

 

[JimL]

Rain, it has to be Ryan's decision when to do the surgery. You will certainly help him in making that decision by gathering the useful information, and helping him to understand it. It is difficult that some of the information is guesswork, such as How long until it gets worse? Isn't the answer that nobody knows. Keep us informed. I hope to meet Ryan in Denver; it's always nice to meet someone I can look up to.

 

[fyrfytr]

Hey Gina,
IVUS is Intravenous Ultra Sound using a Doppler Probe.

Rain, you might also check into the Colorado Heart & Body Imaging. I think it is, www.coloradoheart.com

Take Care

 

[Georgia]

Rain, I'm sorry about all of this. I think another issue here is that Ryan has good medical insurance at this time. If he waits until he's out of school and ends up covered by a medical plan that has a waiting period for pre-existing conditions he could really be up a tree if he needs emergency surgery - as well as being in debt AND not having many options as to who does the surgery.

I simply can't believe that this surgery would be recommended for him unless they're terribly concerned that his condition will go south pretty suddenly.

My thoughts and prayers are with you and Ryan. We're all your Number One Fans.

 

[Rain]

Thanks for your support.

Thanks for your support.

I really appreciate your responses. It?s one of the scariest things I?ve ever had to do. The only thing worse than planning your own heart surgery is planning one for your child. Let me see if I can respond to some of your questions.

At one of Ry?s appointments a couple years ago we discussed having the surgery before he finished college IF the condition got worse, for the following reasons:

1. The cardio is sure that he will need the surgery at some point in the future. He?s thinking the not so distant future. So why not do it at our convenience rather than when its life threatening. Suppose he?s new on his first job when it needs done, etc.

2. You never really know when or how quickly the aneurysm will grow.

3. Ryan would still be on our insurance. Who knows what the future holds for him as far as insurance is concerned.

4. Ryan won?t stop doing things he?s not supposed to do. Such as rock climbing, skiing, lifting heavy things, etc.

5. He would still be home with me, so I would be able to take care of him this summer.

Those are all really good points.

I guess I?m mostly questioning it because it doesn?t seem like we?ve had good results from the tests. We?ve been doing echos and every other kind of test you can think of for the last 3 or 4 years and the numbers never seem to be consistent. They bounce around from 4.2 to 4.6. I want to know for sure! My cardio said its impossible for it to shrink. But he also explained to me the way they measure it... not every tech is going to measure from the same point. But we?ve done other tests too! And if it hasn?t changed since we?ve been watching it... then should we really be doing open heart surgery at this time?? Who?s to say it won?t stay that way forever? I know ...why chance it, but heart surgery itself is a chance!

We have our own family heart surgery horror story. I?ve never told it here, because I didn?t want to scare anyone. Ryan knows all about it. It was his cousin... only a year younger than Ry. Ryan can put it up to a lousy surgeon and statistics... it freaks me out! My nephew went to the NM Heart Hospital in Albuquerque to have a hole in his heart repaired. Supposedly a very simple and common procedure. They didn?t even have to open his chest.. they were doing it like you do an angio. Before they even began repairing the hole, they nicked a piece of meat off his heart and it went to his brain. He has seizures and permanent brain damage as a result. They had to stop immediately and the hole has never been fixed. They want to open his chest to fix it now.. but he refuses to have it done now. That was only two years ago. He was a very intelligent, seemingly healthy person before this happened.

Eric (Ry?s 23 year old brother) says I?m just being Mom...looking at every angle, making sure Ryan is making the right decision. Eric?s opinion is that, Ryan?s researched it, he?s not going into it blind. He?ll be 21 years old in June. He?s not the type of person to make uninformed, rash decisions... so if he?s ready.... he should go for it. He?s probably right. He probably knows Ryan better than anyone on earth.

Vergil?s opinion is pretty much the same. I guess I?m the only one dragging my feet. Ryan want?s it done and over with. He?s ready to move on and put his heart problems behind him. It also scares me that something might happen and Ryan need coumadin.

I?ll support Ryan?s decision all the way... but for my own piece of mind, I have to make sure we have conclusive tests done and an outside opinion. I think I could talk Ryan out of having it done now, but I don't want to influence his decision. And the truth is... I'm not sure this isn't the best time to have it done! I'm just scared.

 

[sylviayasgur]

hi rain!
i haven't been on in awhile and am so sorry to hear that you are going through this. i can hear the fear in your writing!!
can't say i blame you one bit; i would be the same way.
when we get scared we start looking at the worst case scenario (like ryan's cousin's experience), which often adds to the existing fear.
the positives you mentioned are really strong points.
i wish there was a more precise test (cath?) to let you know exactly where things stand. maybe a second opinion is not such a bad idea?
also, i love gina's suggestion of a non-invasive cath.
i'm sorry i don't have any better suggestions, but please know that you and your family are in our thoughts and prayers.
please keep us posted and be well,
sylvia

 

[John & Joann]

Hi Rain,

We wish that there was more information that we could suggest. It is MUCH more difficult being a parent than being a patient.

You may wish to consider Cleveland Clinic. They do have many patients with this type of problem. Perhaps they could evaluate during spring break for a second opinion.

Just an idea, but going to a major facility will give you more information. I would certainly do the surgery while Ryan has insurance. Not an easy procedure for a young man, new job, and no insurance.

Let us know how we can help.

 

[Nan]

Rain, I am so sorry to hear about Ryan. It is so much more difficult to help and plan for your son's heart surgery than for your own!!!

It is really scary...if it were my son, I know I would be totally freaked out.

My thoughts are that

1) as others have said, getting a second opinion...perhaps with a cath or non-invasive cath if available to you (him).

2) if he is ready, then take a deep breath and go with it.....losing him because he didn't have the surgery is not a good option!!! Especially since one can never be sure when it might enlarge suddenly.

The bad experience you cited is frightenening, and you and he need to discuss it with a surgeon, how often does that kind of thing happen, what are other risks, and how often do they happen.... Basically the more information you can get, the better.

I will certainly be holding you and Ryan and your whole family in my thoughts.