aorta aneuryism

[cpap]

My nephew (20) has had chest pains for sometime.  Finally, doctor did a cat scan (insurance would not allow nuclear stress test then).  A long story short, the cat scan shows one side of his aorta twice the size of the other.  The Dr said it's serious and wants to see him in three weeks?  (I don't get that)  He said he will definitely need surgery.  I believe his blood pressure is good. He's not on medication.  Currently, my sister is trying to get him in to Cleveland Clinic.  Are there successful surgeries for aorta anyeurisms.  Heart problems run in my family.  I'm looking for options and statistics.

Thank you very much.

Carol

[Cleveland Clinic]

cpap,

We see a large number of patients with anuerysms at the Cleveland Clinic. In fact we have several cardiologist and surgeons who specialize in anuerysm management and repair.

GO to our website and search for aneurysm for more information.

good luck

[Carolina03]

Carol,

ValveReplacement.com has a wealth of info on aortic disease and surgeries. (Many of the members of the forum have had such surgeries, and can provide personal info and educational links and stats).

Wishing your family the best --

Carolina

[Jjc2005]

I can tell you for sure that surgery for an aortic aneurysm can be done successfully.   Three weeks ago I underwent surgery to remove an aneurysm and replace the diseased aorta with a dacron graft.  I am a 59 year old female and I am already back to walking daily.   Before surgery I walked 4 miles daily.   I was back up to two miles two weeks after surgery.

I lost a sister and a cousin to dissected aortas and was then found to have a dilated aortic root also and opted to get it fixed.   I do hope your nephew gets good medical care.  My surgeon trained at the Cleveland Clinic and was great.  For me, surgery was the best option.

Our family also had a history of heart problems and sadly it took two deaths to learn that diseased aortas were an issue. Currently many members of my family are being checked so if they also have this often genetic condition, they can deal with it in a timely manner.

I wish your nephew the best and hope your family can get the help and information you need.  By the way, my doctor also considered my condition serious and there was a still a three week timeline before we scheduled surgery.

[heartygirl]

What kind of tests are your family members undergoing to check for the possibility of future dissecting aortas?

[cpap]

Thank you for such a quick response.  I had also lost family members due to heart problems. My mother was 51 and I had a nephew who died at 14 of cardiomyopathy.  Both suddenly.  I don't want to think of losing anyone else.  

This gives me hope!

I'll try the website.  I'm so happy to hear, jjc, that your surgery was successful and your doing well.

When this is over, I'll let you know (if that's ok).

Thanks for the wonderful information.

God Bless!

Carol

[cpap]

Currently, they're trying to get a surgeon at the Cleveland Clinic.  I know he's scheduled to have a nuclear stress test.  My sister insisted on this previously, but the insurance company wouldn't budge.  My nephew had been doubling over with chest pains, but they said he didn't meet the criteria.  

It's still new to us, so were taking one day at a time and hoping the doctors advise the right thing.

Thank you all!

[uptowngirl]

Hi, I think it is prudent and wise that your nephew is getting medical attention quickly. My daddy waited a little too long for medical intervention and then they could not operate.  He was in his 50's however.  The Cleveland Clinic is great.   Is your nephew reasonably close in distance to Cleveland?  I would do whatever is necessary, insurance coverage or not, work out a pymt. plan or whatever is necessary.  As a Dr. once told me when I gave him the line that "the main issue here is that I can't afford this procedure" He said "Ma'am the main issue here is your health and you can't afford NOT to have this done.

  I am not a medical professional, these are only my thoughts and experiences.  Let us know how every thing shakes out.

All the Best,
uptowngirl

[Jjc2005]

Some have gotten CT scans of the aorta;  others are getting echocardiograms.

[cpap]

You know, this is what I don't understand.  The doctor said it is very serious, he must have surgery and they have scheduled a nuclear stress test...but he doesn't go back for three (3)weeks.  I'm not sure if they are doing an echo?  I thought they would have admitted him.  (I can only guess there's nothing else to do until all tests are complete?) I don't know about my sister's insurance, but I do know she will do anything to get her son the best treatment.  Even if it means giving up everything.

I'm going to talk to her again tonight and ask more questions of why it's going to take so long to get him to Cleveland Clinic.

Thanks,
Carol

[knicks30]

He is very young, only 20 years old. Same age as me!

Has he ever been diagnoised with Marfan Syndrome? I just find it rare a young man with normal blood pressure with an anuerysm in the aorta.

[cpap]

Yes, that is very young. Thank you for your concern.  I don't know of him being diagnosed with anything else.  I'm not familiar with the medical syndrome you've mentioned.

[I'mallheart]

i am 29 male...i take 25 mg atenenol for tachy/anxiety and klonopin... i am 5-7 200 ibs.. i can see my stomach pulsate..ive read stuff on annerysums/.should i get further imput... done a echo 20 mos ago.. event and holter 20 mos ago.. did also a ultra on belly 14 mos ago...never got an results just said looked fine i assume since let me go home.. i have no insurance yet...what to do

[cissycicle]

I was 48 years old (three years ago) when I was diagnosed with an ascending as well as a very large descending aortic aneurysm. My aorta was also tortuous (twisted).  In the past three years I have had the aneurysms repaired, the aorta rebuilt,the arotic root repaired and the aortic valve replaced with a St Jude's Mechanical valve.  My first repair was the ascending aneurysm (1st sternotomy). I traveled from Michigan to Houston for that surgery.  Major issue, however great results.  Boston was the next stop within six months for the repair of the descending aneurysm (1st thoracotomy). That was followed by many complications involving the unexpected rupture of my spleen.  Within four hours of the completion of an eleven hour procedure, I was re-opened to remove the spleen (2nd thoracotomy).  I was intubated for three weeks (almost three years ago to this day). I was at that time married to my second husband who requested that I be taken off of the life support system after two weeks. The "stress" led him to have an affair and he was soooo concerned about my comfort he felt it was best that they let me go. Thankfully, my adult daughter from a previous marriage (1st husbandotome!) opposed that idea and I remained on the ventilator for one more week. Needless to say, my recovery was made very difficult by my now former husband.  The marriage was dissolved(2nd husbandotome!).  This past September the aortic valve was replaced with a St Jude's mechanical valve (2nd sternotomy) and I am now living a reclusive but comfortable life with my four cats, a weiner dog and my twenty year old bird. I receive petimony (pet support), alimony (spousal support) and disability payments. Aortic aneurysms are easily recognized as a legimate disabilty by the Social Security Administration so don't hesitate to apply. This has enabled me to offer assistance to others who are in much greater need than I could ever imagine. So, there you have it, two sternotomy's, two thoracotomy's and two husbandotme's and life is better than ever.  Fear not!  Life begins post aneurysm repair! Make plans for the day after the surgery, not the day of.

[cpap]

WOW!  You've been through alot...and still a sense of humor. It must have been a tough time.  I'm glad to hear your surgeries were successful.  When I hear these stories, it gives my family such hope.  

Thanks for responding!
Cpap

[cissycicle]

In response to your concerns regarding the insurance coverage of your nephews' condition.  When worded properly, the billing can be manipulated to gain approval of payment.

My life has been a "stress test" and I would like to put my experience to good use.  I am more than eager and willing to give the encouragement that is needed.  I would WALK to the hospital to support your sister and her family!

So, tell me, where are you?

[mmfd]

What a great attitude!!  People can learn a lot from you...  Obviously your brain was not affected despite being on the vent  for three weeks!  ps.  I didn't know there was such a thing as petimony!

[cissycicle]

Surprise!  My ex-husband didn't know there was such a thing as "petimony" either! He was also ordered to pay medical expenses for the pets. My ex-husband filed for divorce and announced that he was taking the four cats and the dog. He gave me the bird, and more than the one in the cage, I might add!! Luckily, he was unable to have any pets in his new home. The pets proved to be a source of therapy for me during my lengthy recovery period following my hospitalizations. Out of that, I learned how valuable they are.

On occasion, I load my pets into the car and visit the local nursing home.  What a joyous experience for not only the less fortunate, but also for me. I take photo's of the folks with the cats and dog sitting with them and post those photo's in the dining room of the facility. Certainly brightens up the room. This, is the most valuable form of therapy I have encountered. Think maybe the ex-husband would do the same?  NOT!!!

Those pesky aneurysms were initially viewed as "catastropic".  I think not. They have brought more positivity into my life than I could ever have hoped for!

Keep on keeping on!!!

[cpap]

We need more people like you in this world!  After all you been through and still willing to reach out to others...amazing!  

My nephew is from Ohio, 1 hour from Pittsburgh.  We were at Ruby Hospital in Morgantown, WV yesterday.   The doctor said my nephew's aneurysm is 4.3.  It's in the arch. He's not in immediate danger.  However, they are now checking to see if he has Marfan's.  He has had chest pains for many years and has been short of breath (no one thought to investigate his heart).  He's tall and slender, but he doesn't have all the characteristics of Marfan's.  After reading a little about that disease, I am hoping he doesn't have it.

Thank you!

[cissycicle]

How goes things with your newphew?  Did you know the actor who played the neighbor with the British accent on the "The Jefferson's" has Marfan Syndrome?  He was approached by a spectator who said his appearance was indicative of Marfan Syndrome.  He tested positive and now has the advantage of having it under control.  What a lucky break to have had that particular audience member in attendance.
If your newphew does have surgery, PLEASE tell your family members not to be alarmed by the effects of the medications.  No one advized me or my family of the hallucinations that often times are experienced. I had visual, as well as auditory hallucinations.  Not like the "trips" from the late sixties!  Very dark and scary. After much research, I learned that there is a chemical in the brain that is activated by the drugs and it creates a sense of vulnerability.  Thankfully, it's only temporary.
Hopefully, your nephew will find his way to a facility that is highly equipped to properly diagnose and treat his condition.  For several months following my three weeks in a medically induced coma, I was afraid of life, not death.  Now, however, I feel blessed to have been given the opportunity to have each and every body part checked.  What an advantage to have the knowledge. Certainly has made me apprecitate the fact that tomorrow, today will be yesterday!  Good luck figuring THAT one out!

[cpap]

Thanks for your response.  My nephew went to Ruby Hospital last week (they do not perform enough of these surgeries, so they will refer him somewhere else).  He is seeing a special cardiologist this Thursday, they moved his appt up due to chest pains.  He has been having them for sometime, that's what prompted my sister to get him tested.  He used to play basketball (and was good), but he'd raise his hand and ask to come out of the game due to breathing issues.  My sister would get so mad at him...now she knows.  She feels awful about it, too.  

I used to watch the Jefferson's.  I know who your talking about...very lucky guy.

Hopefully, we'll find out more this week.  He has an appt to see a rheumatologist.  We're still in the stages of getting tests.  I quess it's one week at a time.

Thanks for advising me on the medications and the encouragement.  I will alert my family should he have surgery.

[cissycicle]

Have you gotten any solid information about your nephew?  As I have mentioned in my previous comments, I have traveled to multiple locations throughout the country seeking treatment of the aortic aneurysms.  I had my most recent surgery (aortic valve replacement) performed at William Beaumont Hospital in Royal Oak, MI. which is locate within crawling distance of my home.  What a wonderful experience.  My recovery was unquestionably delightful. Feeling qualified to make a judgment based on my experiences, I would have to say Beaumont is the best of the best. The staff does not consist of contract workers.  The staff is highly trained and very dedicated and loyal to their employer. Methodist Hospital utilizes contract employees and the performance is quite shabby. No loyalty to the hospital.  

Looking forward to hearing what's happening with your nephew.

cissycicle