Attention Ross Procedure Patients

[Bryan B]

I have an interesting e-mail conversation to post with a prominent surgeon...BUT I want to wait until tomorrow afternoon or evening to post it. I posted a few months ago that my aortic root was starting to dilate somewhat and my cardio wanted me to go in for a cardiac MRI with contrast. At the time I had barely put a dent in my 1,750.00 deductible and couldn't afford to have it done. Since then my back/hip problems flared up to the point that I couldn't ignore the daily pain I was enduring anymore. So I went to a back specialist who talked me into having a MRI. He needed to have the MRI performed before he could start treating me with spinal epidural steroid injections (which have helped tremendously btw) so he would know where to place the injections. This procedure got me about half-way to my deductible. Also...my COBRA insurance runs out at the end of July. So I decided to get the cardiac MRI (which is at 10AM tomorrow) and I'm following that up with a colonoscopy Wednesday at 10AM. Once I made the decision to pay for the MRI of my aortic root I decided to write to this surgeon to find out what my options would be if it continued to dilate.

But I digress. Once I get the exact measurement on my aortic root I want to share this surgeon's views on aortic root dilation in RP patients with other RP patients (and anyone else that is interested in the information). I know that several of us RP'ers are dealing with dilation of the aortic root and I hope that the information in this e-mail will be helpful. I just want to find out exactly where I stand concerning my aortic root before posting the e-mail.

Stay tuned for further details.

 

[terodac]

LOVE your dog! I want one so bad, looking to rescue one. I heard they are really smart. I had the bentall procedure 2.5 years ago. I would get it fixed but looks like you have a lot on your plate right now. Cobra really is expensive and they love to get rid of you so watch out!

 

[Bryan B]

I have decided not to post the e-mail that I had planned on posting unless someone is really interested in reading it. I e-mailed Dr. Paul Stelzer, a world renowned Ross Procedure cardiothoracic surgeon from Mount Sinai Medical Center in NY, NY. I had asked him some questions about valve sparing techniques if my aortic root continued to dilate at its current pace.

Unfortunately my MRI not only showed that my aortic root dimension was 4.4cm (reading was 4.3cm on echo) but that my ascending aorta was 5cm at its widest point. It also showed that my aortic insufficiency was mild to moderate (reading was mild on echo). At this point I am going to have to wait for more answers from my cardiologist and original surgeon after they view the MRI results before I know what options I have, if any, other than replacing the aortic valve, root, and ascending aorta at some point in the not to distant future.

I was really bummed out after hearing this news today. I was supposed to start prepping for my colonoscopy tomorrow, but since it has been put on hold I went and did what I usually do when I want to escape from everyone...I went and played golf. I put on my MP3 and just enjoyed being outside and it helped to keep my mind off of all this crap...especially since my COBRA insurance runs out at the end of the day on Friday. I shot the second best round I have had all year (75).

I guess it's a good thing I have been keeping up with the latest in valve technology, because if I end up needing my aortic valve replaced it's looking like mechanical since it would be my second surgery and I am only 48 now. I'm hoping that I get a reprieve somehow, but if not it looks as though I might be joining the Onyx family.

 

[catwoman]

Bryan:

Sorry you've gotten some dismal information. I can empathize with your need to cancel a colonoscopy and go play golf.

Let's hope the doctors won't be readying an invitation to the OR for you.

 

[Turkey Hunter]

I would be interested in reading the e-mail.....as I also have an ascending aortic aneurysm we have been watching for some time.

You may want to keep it private as to not upset anyone or the surgeon....never know who's reading these.



Turk

 

[Bryan B]

I would be interested in reading the e-mail.....as I also have an ascending aortic aneurysm we have been watching for some time.

You may want to keep it private as to not upset anyone or the surgeon....never know who's reading these.



Turk

PM sent Turk

 

[Karlynn]

Bryan - sorry to read that this has been challenging for you. I'm sure what you learn will benefit others here.

 

[nickd]

Bryan,

Sorry to hear about what's going on, I met with Dr. Stelzer when I was considering the Ross and almost went with that procedure. I thought he was a great guy and respect his opinion. I am curious if what he wrote you is similar to what he told me when I asked about dialation with the root.

Nick

 

[COLLEEN S]

I' d like to hear also. PM me with what you were going to post. I am post Ross and post 2nd OHS. Sorry to hear you are dealing with all of this. I had a colonoscopy scheduled and bailed also, so I cant blame you.

 

[Bryan B]

Nick,

PM sent.

 

[Bryan B]

Colleen,

PM sent.

 

[Bryan B]

For anyone following this thread, I talked with my cardio over the phone today and surgery is imminent. In their opinion they need to replace the aortic valve and root, and the ascending aorta up to the aortic arch. I have an appointment to discuss my "options" with them on August 11th. I'm just guessing that surgery is probably no longer than 3 months out from now.

Here we go again. I'm still in the numb stage, but I'm guessing that I will go through all of the stages (numb, anger, denial, acceptance) quicker this time. But I still have to decide on what type of valve to choose. My gut says to go mechanical with an Onyx but part of me knows that if heart valve replacement via catheter does become the norm 10 years down the road they won't be able to do this with a mechanical valve in place. Well at least I can scratch the Ross Procedure off the list since I am out of native pulmonary valves.



I know many won't see this post because it's part of a Ross Procedure specific thread but that's OK. I'm sure I might mention it once or twice more before my surgery.

 

[kfay]

Brian, I'm so sorry to read that you are going to have to have surgery again so soon after your last. I'm sure you went with the Ross hoping it would last you forever, with no coumadin. At least you know what to expect, both the good and the bad. You know you will feel like crap for a while, but you also know that with each day, you'll get stronger and feel a little better. I wish you the best of luck with all of this.

Are you doing this at Duke again?

Kim

 

[Ashley]

Hi Bryan,
I'd be interested in seeing the email, thanks. I'm considering a Ross, to replace my stenotic aortic valve.
Thanks,
Ashley

 

[StretchL]

Goodness, why all the mystery? Please post the e-mail here. That's the idea with the forum, right? To share information? Why should some of us be more informed than others?

If you indeed don't want to post it, please e-mail me a copy [email protected]

But e-mailing it to select people will preclude any discussion of Dr. Stelzer's opinions here, which would be valuable for anyone considering, or having had, a Ross.

 

[Bina]

Bryan, sorry to hear about your re-op in the near future. Mull over the OnX, and hang in there.

 

[Bryan B]

Goodness, why all the mystery? Please post the e-mail here. That's the idea with the forum, right? To share information? Why should some of us be more informed than others?

If you indeed don't want to post it, please e-mail me a copy [email protected]

But e-mailing it to select people will preclude any discussion of Dr. Stelzer's opinions here, which would be valuable for anyone considering, or having had, a Ross.

Stretch,

I'll try to answer your questions the best I can.

I am not a patient of Dr. Stelzer and e-mailed him out of the blue. I thought the information he gave me was interesting but before I could post it I found out that I had much bigger problems to worry about. Since it's "my" thread I decided not to post the e-mail but offer to PM it to anyone interested in seeing it. So I haven't sent it to select peope but to anyone who has asked me to send it to them. Part of my decision was also because this was a private e-mail between me and Dr. Stelzer, and after thinking more about that I had reservations about posting it openly on a forum. That is my prerogative...and given that I just found out I need to have a re-do surgery not only because of my dilated aortic root (4.4cm) but also because my ascending aorta has dilated to 5cm, I decided that I "didn't want to play anymore and wanted to take my ball and go home". As someone who had your RP performed by Dr. Stelzer I'm sure there is nothing in this e-mail that you don't already know.

But wait...I'll give a brief summary of the e-mail in my own words concerning someone who has had a RP and has an aortic root that is increasing in dimension at a steady pace.

He will watch it until it reaches approximately 5cm (although it might vary slightly from person to person).

If it reaches this point and the autograft is still in good shape (mild regurgitation or less) he can do a valve sparing repair on the aortic root.

If the autograft is leaking at a moderate or higher level he will wait as long as possible before replacing the valve/root. His thought is that if he is going to have to replace the valve, the longer he can wait the better chance that a tissue valve can be used.

I hope this answer is satisfactory. I will not be PM'ing anyone else with the e-mail. What I just explained above is almost verbatim from the e-mail.

Thanks,

Bryan

 

[Danny]

Bryan, Im very interested in this....i also have a dilated aortic annulus measuring 4.9 My surgeon and cardiologist want to monitor every 6 months. I actually go for my first 6 month follow up on the 10th of August. Im very scared, and since i found this site, I am a little more at ease because of all the nice people and comments i get. Alot of information floating around on this site. Thank God.

 

[francie12]

Bryan--I just wanted to say that I am so sorry to read that you are up for another surgery. I remember your kind and reassuring posts well from when my son was first diagnosed and I was scared and clueless. If it's any help at all you have another person out there rooting for you. All the best.

 

[COLLEEN S]

I'm a Rosser and I wouldnt reccommend it to anyone unless they are doing them differently. The contrast in pressures between the aortic and pulnomic valves just set you up for an aneurysm, IMHO, with the pulnomic not able to withstand the pressure that the aortic withstood, leaving you with a bulged artery (aneurysm). This is what happened to me.