New member and new situation

[Gnusgal]

Just wanted to jump in and say I had OHS when I was 21, then again when I was 25. They weren't the same procedures you're going through, but I know I had plenty of scar tissue to work around. Not only that, but I had the scar tissue from previous pacemaker surgery as well. Just make sure you discuss these concerns with your surgeon. He/She can tell you if what they have experienced and how they will handle it.

Good luck to you! You've come to a great place for support and information.

 

[Susan BAV]

Yep, what it means is that the surgeon/cardio should have replaced the aorta the first time around as it was always going to bugger up at some point in the future.

Unfortunately i think this way of pro-actively doing the aorta at the same time as the valve is only a recent train of thought...

From what I understand, this is still not an Absolute, the necessity of simultaneously replacing aortas and valves on all bicuspids; and the medical community didn't absolutely recognize the possibility of degrees of connective tissue issues fifteen years ago anyway. Partial hindsight here and now is all we have to go by.

And, Evan, I liked how your described this site in your earlier post: "helpful, moving, educational and very personal." Very well said I think!

 

[Arlyss]

It is so difficult to get the diagnosis of an aneurysm. Eventually we come to understand that it is a good thing when it is found, and the day of surgery is a very good day - the aneurysm is gone and can no longer hurt you.

Regarding scar tissue, after 10 years or more from the last surgery it is much softer and easier for the surgeon to deal with, so it is good that so many years have gone by.

One thing you want to discuss with the surgeon is how close to your sternum (breast bone) the aneurysm is. With a redo surgery and a large aneurysm, you want to be sure that this has been looked at carefully. If the aneurysm/aorta is too close to your sternum, they need to use a special technique to open your chest. I don't want to frighten you, but you do not want a crisis when they open the chest.

Even when going to a major medical center, ask the important questions - you want to be sure you have found the aortic surgeon with the best expertise at that center. Ask the surgeon how many of this exact operation he does in a year. How many deaths within 30 days following surgery, how many strokes or other injury from surgery, and typically how many days in the hospital before discharge.

Request that your mechanical valve be carefully evaluated also.

You have this condition because you were born with a BAV. Your other family members should be screened also. More information at www.bicuspidfoundation.com

Best wishes to you and your family,
Arlyss

 

[NH_Male]

Thank you all again for all the kind words and helpful information.

I was referred to Dr. Ralph Bolman at Brigham and Women's hospital in Boston. He is chief of cardiac surgery, specializes in aneurysm repair, and has been doing this a long time. He emailed me today and wants me to come in to meet him pretty quickly to get this thing fixed. He seems calm and assured that all will be well. Brigham is ranked #5 nationally for cardiac surgeries.

http://www.brighamandwomens.org/mdSearch/MedicalProfessionalDetail.aspx?MPR=9124

http://www.usnews.com/usnews/health/best-hospitals/rankings/specihqcard.htm

So here is my list of questions for him so far:
1. What are the risks the second time around? Will scar tissue be a problem or as someone mentioned here, does it become easier to work with over the years?

2. Will my valve be evaluated? What if it needs to be replaced? (No one has told me it does)

3. Do I have to go through a cardiac catheterization? That scares me more than surgery. Last time I had that done, my blood pressure went through the roof and my heart pounded and fluttered. I read that cardiac MRA's are all the rage now, and Brigham does do those.

4. How many surgeries have you done? How many as second times? Any issues? Strokes? I had a clot thrown a month after my AVR. How do we prevent that from happening again?

I can't think of anything else at this point. Any more I should be asking?

Thank you again

 

[MrP]

Suggested questions:

How much of the ascending aorta will need to be resected to avoid another aneursym in the future and how will this determination be made during surgery?

Will DHCA (deep hypothermia circulatory arrest) be performed to resect your ascending aortic aneurysm given its size and the possibility of it extending into the aortic arch area now or to avoid another anerusym developing in the arch area in the future?

How will cerebral protection be provided?

 

[KAJ]

Thank you for the kind words.

Karl, my valve was indeed bicuspid from what I remember.

Does that make a difference now, when dealing with the aorta?

I don't think it makes a difference when dealing with the aorta. However, it is very common for people with biscuspid valves to have or later have an ascending aortic aneursym (not certain of the exact percentages). It can be associated with connective tissue disease.

Karl

 

[NH_Male]

The one two punch:

Just got word a couple hours ago from my Urologist that the source of my bleeding, what I originally went for CT scans for, is a lemon sized malignant tumor on my left kidney. The good news is that its contained in the kidney right now. It has not spread anywhere.

So it looks like aneurysm repair followed by kidney removal.

What a new year this is turning out to be!

 

[PJmomrunner]

Yikes! When it rains it pours, huh? At least it's limited to your kidney. You know, the good news is they know about this tumor of yours. Had you not insisted on the annual echo, they wouldn't have done whatever test (CT?) found the tumor and you might not have known about it until it had spread, so there's a definite silver lining, right?

In the spirit of "misery likes company,"...I have a paraspinal neurogenic tumor at the level of my aortic arch that is "mostly likely" benign. I too will have tumor removal surgery at some point.

 

[Phyllis]

That is a one-two punch, but we have a friend that just had a kidney removed last year for a confined malignant tumor too. He had the surgery a year ago November and was back to golf and biking by February-he is healthy and fine this year. Be thankful that they caught it before it spread. We will keep you in our thoughts and prayers.

 

[Karlynn]

Evan - are you feeling a bit like "if it weren't for bad luck I'd have no luck at all."? I'm so sorry to read that you face yet another challenge. But I'm also glad to read that the tumor is contained. We have many members here who've had more than one medical battle to fight and have done well. Keep us posted on what is going on with you. You have my prayers.

 

[Susan BAV]

(I'll try to post again - just had a stupid screen that popped up and ate my first reply)

Very sorry to read this Evan! Is it known that the tumor is confined? Is the kidney working? My kidneys had some trouble recovering after my AVR, although I don't believe that's a common problem among those that post here. How urgent is your surgery time line? I hope you have a great support group, including reliable family members, to help you through these next few months. Also, can you get a copy of your AVR operative notes from fifteen years ago? That may be helpful to your doctors for these next two surgeries. Hang in there. I hope things get better for you and your family very soon.

 

[NH_Male]

Thank you to everyone for the kind words.

Yes, my luck is definitely interesting. in a sense, they caught both things before they could have been catastrophic (the anyeurysm and the tumor) but at the same time... eesh! .. I am facing a "Why me?!" moment.

I thought about this a lot lately. There is an old Woody Allen joke: "I don't complain, I grow tumors instead." And I wondered if there is any truth to that for me and others who don't handle stress well or can't communicate or vent. I certainly worry and stress about everything and it seems to be manifesting itself through my physical condition. I need to make major changes, I think.

Anyway, thank you again. I am still in stunned disbelief.

 

[Susan BAV]

(Evan, I think you and I were posting at the same time; I have another post in right before yours.)

And no wonder you're stunned! You're certainly allowed a, "Why Me?!?" moment! Or several! But you're already looking for the silver lining and that's a very good indication of a positive outlook.

 

[KAJ]

I understand your thoughts and feelings. I sincerely hope all goes well for you during both surgeries.

Karl

 

[Lynlw]

Evan I am very sorry , I will definately keep you in my prayers, Lyn

 

[BDMc]

Double Whammy

Double Whammy

Evan, I am so sorry about your ailments! I remember how stunned/ shocked I was just about my OHS. I can't offer much, but as one that is very skeptical of hospitals/docs etc... the Brigham is my favorite Boston hospital. Do keep us posted, and feel free to contact me if I can help. Brian

 

[Gnusgal]

I'm so sorry to hear this latest. I have found for me that I tend to have surgeries all clumped together within a year, then I can take a year or so off, and it's off to the OR again... Just doesn't seem fair that some people make it their entire lives without seeing the inside of an OR personally and then there are those of us who visit again and again. But I've always been a firm believer in positive thinking. I know you'll come through these surgeries with flying colors and will feel much better when they are done.

Good luck to you!

 

[NH_Male]

I keep thanking you all for the good thoughts... again, thank you. Its all appreciated.

So we met with the Urologist last night and he walked us through the CT scan films and showed us how the tumor is stage 1, and that Coumadin may have saved my life. Yes, that annoying little blood thinner exposed a tumor that could have been hiding in non-Coumadin patients for years. So, as far as the kidney cancer goes, we got it early. We both felt a lot better after meeting with the doc last night.

One thing he suggested we look into is the possibility of doing the Aortic repair and the kidney at the same time?! He said its worth asking. So when we meet with the cardiac surgeon, we'll ask.

So now that I am relieved a bit about the kidney situation, I have more time to focus on my worries about the aneurysm.

I have been trying to look up stats on mortality rates, strokes, etc. I need to really stop all that and focus on them finding the anuerysm before dissection, which is the most positive development of them all. I am assuming that I am in good hands, and that this procedure is so routine for these doctors that things rarely go badly.

Positive thoughts... positive thoughts... positive thoughts...

 

[Harrybaby666]

Hi Evan......

Hi Evan......

I just wanted to jump on the welcome wagon and say hi there and welcome to this awesome website...even though I haven't had heart surgery yet, I do have alot of issues with the ole' ticker and I also have other multiple illnesses as well as chronic kidney stones/trouble. I am also in NH and there are a few others as well, so maybe at some point, we will have to have our own "reunion"...LOL Anyway, I just wanted to say hello and welcome, and please know that I am routing for you with these horrible events that have taken hold...Take Care, Harrybaby

 

[Georgia]

Hi, Evan! We serve cheese with whine on this site - whining is encouraged - whatever it takes to get folks through these awful times.

It surely helps to have a group that's both sympathetic and reality-oriented.

I think the possibility of having both surgeries at the same time would be nothing but a bonus - you'd be off coumadin only once with all the messing around that entails.

Best of luck; we're happy to be your sounding-board.