Surgery Consult Done, Doc says he does 10 a year

[harleygirl528]

Who are the experts in aortic arch aneurysm repair?

Who are the experts in aortic arch aneurysm repair?

Arlyss: Wow, thanks for the information. I guess I should be looking for a very specialized surgeon who has a lot of experience with hyperthermic circulatory arrest....someone who has done lots of repairs of the aortic arch. You mentioned that there are only a few who you would let operate on your arch...do you mind my asking who the experts in this field are? I am running out of time here...my aneurysm is 5. cm and I do not want to wait a whole lot longer.....I have sent my records out to Cleveland Clinic and am waiting to hear back from them. I know they have like 10 cardiothoracic surgeons and I am wondering which one specifically is a specialist in this area....seems that Dr. Svennson may be? Also, I have a consult with Dr. Verrier at Univ of Wash this thurs. Seems like there are lots of specialists who are fully capable of valve replacements and even aneurysm repairs that do NOT involve the root....the first guy I consulted with said no way would he do the surgery..he admitted that when it involved the arch he was not qualified. Please help...someone with a link to specialists in this area. With my insurance I can travel wherever....and it doesn't matter to me...the priority is to find the absolute specialist in this field and get it done soon.

Thanks so much!

 

[Lynlw]

Arlyss: Wow, thanks for the information. I guess I should be looking for a very specialized surgeon who has a lot of experience with hyperthermic circulatory arrest....someone who has done lots of repairs of the aortic arch. You mentioned that there are only a few who you would let operate on your arch...do you mind my asking who the experts in this field are? I am running out of time here...my aneurysm is 5. cm and I do not want to wait a whole lot longer.....I have sent my records out to Cleveland Clinic and am waiting to hear back from them. I know they have like 10 cardiothoracic surgeons and I am wondering which one specifically is a specialist in this area....seems that Dr. Svennson may be? Also, I have a consult with Dr. Verrier at Univ of Wash this thurs. Seems like there are lots of specialists who are fully capable of valve replacements and even aneurysm repairs that do NOT involve the root....the first guy I consulted with said no way would he do the surgery..he admitted that when it involved the arch he was not qualified. Please help...someone with a link to specialists in this area. With my insurance I can travel wherever....and it doesn't matter to me...the priority is to find the absolute specialist in this field and get it done soon.

Thanks so much!

This might help, the right side list the docs on the bavd board and a few leading centers you can also see who wrote papers ect http://bicuspidfoundation.com/Medical_Information.html
well going to try and sleep since it's 3 am wish me luck

 

[Bryan B]

As far as percutaneous aortic valve replacement being available for widespread use in the next 5 years...maybe so...maybe not.

The first surgeon I went to suggested I get a St. Jude mechanical valve (nothing wrong with that recommendation). But he followed it up by stating that within 4-5 years there would be an ACT drug available that wouldn't require you to get your INR checked regularly. That was in January of 2004, and as you all know the drug he was talking about never made it clinical trials for ACT on heart valves. Over the years I have been here I have heard many knowledgeable vetrans suggest that when making a decision about valve surgery don't count on what great improvements MAY come about but to make your decision based on today's technology.

 

[Karlynn]

Over the years I have been here I have heard many knowledgeable vetrans suggest that when making a decision about valve surgery don't count on what great improvements MAY come about but to make your decision based on today's technology.

Thoughts of future advancement are things to be hopeful about, but I agree that it shouldn't be your main reason for choosing a valve. Advancements are being made all the time in valve replacement and it's surrounding issues. In science, many many ideas are researched, but few actually make it through to fruition. When I was a kid, the first mechanical heart was implanted. I remember the hoopla over the possibility of this mechanical heart being the new greatest hope for those needing new hearts, instead of transplants. Fast forward - Transplants are still the best hope for someone with a terribly diseased heart. The mechanical heart morphed into technology used to support those waiting for heart transplants, but did not replace the transplant.

For me, the question remains whether or not percutaneous replacement will be available for most who are receiving a 2nd or 3rd replacement. I would imagine that scar tissue from previous replacement will have some effect on whether this will be an option. Unfortunately, it will be one of those things that you won't know about until you need it. I think it's going to be one of those crystal ball issues for each individual.

The On-X valve shows hope for low, and possibly no, ACT. But trials are being done now, and we just don't know how that's going to prove out. If I were to get the On-X, it wouldn't be for the reason of low or no act. That would be a possible plus for me, but not the main reason I'd get it.

 

[tcopel]

I completely understand how difficult of a time it is for you and your family as well. Choosing a qualified doc as well as an equally qualified hospital is daunting especially when you feel appropiately rushed to make decision. Similiarly, I had a 6 cm ascending aortic aneursym but I wanted to make sure that I was exceedingly comfortable with my choice of docs ( and stuff like finances, hospitals, choice of valves, ect) because I didnt want to go through all this again if it could be helped. Rachael is a lady here on VR who had someone do surgery on her that turned out to be a horror story. It took me months to get it all figured out but it was a gamble with my life. Ross is one that didnt have that luxury and, by the grace of God, survived. I live in Oklahoma and found the best choice for me was a cardiothoracic surgeon in Pittsburgh. If you are interested in repair of the valve, then get someone that has done the most because it becomes almost more than just a technical feat, it's almost an 'art form'.
I also want to reassure you about the hypothermic circulatory arrest. It kinda freaked me out when my surgeon said in matter of fact way thats he was going to "chill your brain". I spent a whole of time researching that and found that it reallly makes the procedure safe against strokes and almost the standard of care for what you have. The chances of something affecting your braiin are much less with the hypothermia than without it.
I just wanted to let you know that we understand all this crap your going through and we're cheering you on. I know that all will be well.

 

[maka]

coverage to Tricare Standards effective today which allows me to go to any doctor I want...my maximum liability for a fiscal year is only $1000! I am so relieved...It does mean I need to find a new primary care doctor, cardiologist, orthopedic but that is fine by me.

Lorie
There is very little that I can add to the good advice you have already received....however, I don't understand why do you have to find new primary. carediologist, etc. (if you like them) when the new policy allow you to go to ANY doctor you want....why change?

 

[harleygirl528]

Update: Surgeon Consult #2 Completed

Update: Surgeon Consult #2 Completed

Hi there, Just wanted to update everyone on my progress. I was able to meet with a second surgeon at University of Washington, Dr. verrier who I know many others on this site have used. He says he actually does 50-60 a year and had seen 3 people on the day I went in alone that had the same thing I do.I trust him and he was very reassuring. He said that it wasn't an absolute that I would need deep hypothermic circulatory arrest, which was kind of concerning to me since I know my aneurysm involves both the root and part of the arch. I thought that any time this part of the aorta was operated on DHCA was the optimal procedure to protect cerebral function? He seemed very rushed, and in fact I waited 2.5 hours to see him since he had been in surgery, which is fine since I know that is always the priority. He said the same thing as the other surgeon in that he felt that I was fine to get through the holidays and see him in January in which he would do a 64 slice CT scan and re-evaluate. My aneurysm shows 4.8 cm on MRI and 5.0 cm on CT angiogram. I am on a beta blocker, 12.5 mg Toprol.
I did also hear back finally from the Cleveland Clinic. Dr. Svensson looked at my records and has requested that I travel out there for additional testing and consult. Even though I know many would argue that I have a perfectly competent cardiothoracic surgeon right here in Seattle, (Dr. Verrier) there is a big part of me that just feel why not go for the best? Dr. Svensson is highly regarded in the area of aortic aneurysm surgery and when you google his name along with aortic aneurysm there are like 20,000 hits....I just feel like I shouldn't worry about the "hassle" of traveling to Cleveland and be more concerned with getting the absolute best care possible. All along I have felt that is where I should go...it is nice having made the contact with a local doctor though just in case there is an emergency situation and I need surgery right away.
I am now dealing with the dilemna of valve choice...surgeon #1 told me there wan an 80% chance of saving my native valve, surgeon #2, Dr. Verrier, said not a chance since the bicuspid valve likely caused the aneurysm in the first place. I am interested in the Ross procedure, if possible, and if not would lean toward tissue even though I am young (41).
In terms of why I have had to change doctors, went I left the Tricare Prime system it forced me out of the Navy Hospital clinics and into the private practice sector. I was previously seeing doctors at the Navy Hospital and when you switch to Tricare Standard you have to select doctors in the private sector..which is probably a good thing since I wasn't getting, in my mind, the best care anyway....my echo in April of this year done at the Navy Hopsital DID show the aneurysm and I was never informed...unbelieveable!
Anyway, last week my best friend from Maryland flew out to visit me and I was able to get my mind off of everything for awhile. I have been relaxing, meditating, doing a lot of reading on ways to relax and prepare for surgery and I have a calm acceptance of everything now. I am in a totally different place and every day I feel better an more prepared. Thanks to everyone on this site!!
So, to recap, my next step is a trip to Cleveland for a more testing and a consult with Dr. Svensson, hopefully within the next 2 weeks. My goal is to have surgery in January. I am 5'7" and with a 5 cm aneurysm I am just not comfortable waiting too long, no matter what the surgeons say.

Take care all and hope your Thanksgiving was wonderful~mine was so nice and I was so thankful, more than ever, for all the blessings in my life!

 

[ALCapshaw2]

Lorie,

There has been some recent discussion of the Ross Procedure including some of the TOP RATED RP Surgeons (in New York and Texas). The RP is another "specialized" procedure which is NOT done by most surgeons. Do a Search for "Ross Procedure" and you will find the links. StretchL went to NY for his RP with one of the Best of the Best RP Surgeons (see StrechL's member file info or signature line for more details, including a link to the photojournal of his RP surgery).

THEN you need to see if any of the RP Surgeons are also Aortic Arch Specialists. I'm guessing you will have to pick your top priority and go from there.

For the Mechanical Valve option, I'm most impressed with the advancements offered by the third generation valves (introduced in 1996). See www.onxvalves.com and www.heartvalvechoice.com Other Mechanical Valve Manufacturers include St. Jude (www.sjm.com), ATS, and Carbomedics. The last two are spinoffs from the St. Jude design. ALL 4 of those valves have Pyrolytic Carbon leaflets designed by Jack Bokros (PHD) who is now with On-X.

'AL Capshaw'

 

[Plumber1]

Hi Lorie,

Nice to see your message here and that all is well for you in this process.

I applaud your sticking to your guns and following a visceral/instinctive component in making a decision about where to have your upcoming procedure. I think that patients that pay attention to this important aspect, get it right in the long run.

My surgeons said they couldn't tell for sure if I needed to have the arch replaced until they got inside and had a look -- and indeed only had to replace up-to-the-arch. I did not relish the idea of being "frosted" but also gave all concerned stern words that said "repair what you need while you are in there as this is a one-time deal", meaning I don't want to go through this again.

I did a Celtic drawing prior to my operation that I have pasted into my avatar. It is a dog (man's most dependable friend) who is firmly biting down on an On-x valve. The collar depicts where the Dacron conduit attached to my aortic artery and the legs denote the great vessels coming off the aortic arch. The tail comes down and intends to show good circulation to the rest of the body. So far all has held true and is working very well. I thought you might enjoy.

Hang in there, you are very well informed and have a great attitude. I know you will come out on top of this situation.

Mark

 

[Lynlw]

Hi Lorie,

Nice to see your message here and that all is well for you in this process.

I applaud your sticking to your guns and following a visceral/instinctive component in making a decision about where to have your upcoming procedure. I think that patients that pay attention to this important aspect, get it right in the long run.

My surgeons said they couldn't tell for sure if I needed to have the arch replaced until they got inside and had a look -- and indeed only had to replace up-to-the-arch. I did not relish the idea of being "frosted" but also gave all concerned stern words that said "repair what you need while you are in there as this is a one-time deal", meaning I don't want to go through this again.

I did a Celtic drawing prior to my operation that I have pasted into my avatar. It is a dog (man's most dependable friend) who is firmly biting down on an On-x valve. The collar depicts where the Dacron conduit attached to my aortic artery and the legs denote the great vessels coming off the aortic arch. The tail comes down and intends to show good circulation to the rest of the body. So far all has held true and is working very well. I thought you might enjoy.

Hang in there, you are very well informed and have a great attitude. I know you will come out on top of this situation.

Mark

Love your drawing, Are you going to get a tat of it?

 

[harleygirl528]

Hi Mark,
Thanks for your suggestions regarding the ross procedure. I am extremely interested in this option and that is part of the reason that I am leaning toward Cleveland Clinic...my thought is that they are generally on the cutting edge of the best technology so certainly that will be an option. I see that you had your surgery at St. Pete's...my sister is a nurse there and I wasn't even aware that they had surgeon's qualified for the surgery I need. Perhaps I should consider a consult there? At any rate I am anxiously awaiting a word back from Cleveland Clinic in terms of setting a date for additional testing and consult, with a surgery scheduled at that time hopefully. I am ready emotionally and mentally and would do it tomorrow if I knew I had found the right doctor. I am feeling more and more symptomatic as the days go by (maybe it's just psychological) but I feel chest tightness and tightness in my neck and jaw area as well as feeling out of breath with the slightest activities, like climbing the stairs to my room, even vigorously mixing cake batter by hand. As I mentioned I have been told that I would be fine to wait until after the holidays are reevaluate but something is telling me to do this as soon as possible. I don't seem very able to handle stress these days either and for some reason I seem to have an inordinate amount of it. My heart starts to pound out of my chest and I feel breathless. I was really scared of the surgery before but now I am getting more scared of waiting. And, to make matters so much worse, my back has been absolutely killing me, at time completely imobilizing me and making it impossible to do the simplest things like stand at the kitchen counter and do dishes. Anyway, sorry to be complaining...I do know that I have much to be thankful for, the fact that my aneurysm was discovered and that the technology exists to give me a chance at a full recovery and normal life. I am just anxious to get fixed and begin the healing process. I'll keep you all updated as to when I hear from Cleveland Clinic. I have done some fairly extensive research on Dr. Svensson and he seems to be one of the most highly regarded aortic specialists in the country...I'm sure as such he also is qualified to perform the Ross procedure. At any rate, within the next couple of weeks I am sure a lot of these questions will be answered.
I am so glad to hear that you are doing well Mark~ Thanks to everyone else for your continued input and following along with me on this saga!
Take care!

 

[harleygirl528]

As a footnote: Mark, I love your avatar and agree, it would make a great tat! Can you get tattoo's while on Coumadin? I am a bit of a tattoo lover, and I have one now that is a work is progress...wondering if perhaps I should get it finished before valve replacement, particularly if I go mechanical?

Also, Dr. Verrier at Univ of Wash said absolutely not, he would not even consider On-X valve for me...says it is too new on the market and does not feel comfortable...would recommend St. Jude's with a proven track record....what's that about? I see lots of people on here with On-X valves.

 

[Lynlw]

Lori, is your back pain new, or do you have known back problems?

 

[harleygirl528]

Lyn:
Unfortunately, I have known back problems...in fact during an MRI of my back my aneurysm was discovered so in an ironic sort of way my pack problems (compression fracture ofT-spine) most likely could have saved my life!

 

[Lynlw]

Lyn:
Unfortunately, I have known back problems...in fact during an MRI of my back my aneurysm was discovered so in an ironic sort of way my pack problems (compression fracture ofT-spine) most likely could have saved my life!

That's right, I'm sorry you broke your back, I just got nervous if it was new pain, since that could be a symptom. I would call the doctor about all the pains you are having in your jaw ect,if it is new or getting worse.
I have back problems, not as bad as yours, but I know how ,miserable that is. I know you probably know it, but be sure to mention it to your surgeon.
I hope you feel better

 

[harleygirl528]

Thanks Lyn...I think I will call him first thing Monday if I'm not feeling better. I had to go to the ER on Sunday for back pain...couldn't hardly walk or move...they wanted to do a CT scan but I declined...I have had more radiation in the last 8 weeks then most people have in a lifetime what with the fracture of my spine and then the aneurysm....I also had a full cancer workup because they couldn't figure out how I had fractured my spine in absence of an injury...

My next radiation will be a 64 slice CT scan since this is the most reliable test for determining exact size and location of aneurysm, with the exception maybe of a TEE or cardiac cath, which I want to avoid if possible.
Thanks for your concern~I'll keep you updated!

Take care!

 

[Ross]

with the exception maybe of a TEE or cardiac cath, which I want to avoid if possible.

Come on now, you can't be a full heart valve patient without having these. It just wouldn't be right and it would make me feel jilted.

 

[Karlynn]

Tattoos on Coumadin have been discussed here. I love tattoos, have none myself, but would love to get one. But I've read that on Coumadin, since the bleeding would be a little extra - the tattoo can be blurry. The other issue is infection - but this should be a concern for any valve patient pre or post op and regardless of mechanical or tissue. So if you're going to get yours finished prior to surgery, I'd get an antibiotic.

 

[Lynlw]

Lori, How are you doing? Lyn

 

[Kandice]

I have been reading your story and the difficulty with everything. I just wanted to share that my family and I went to Nashville, TN for my mitral valve repair. We live in Portland OR so it wasn't easy. It was recommended by my heart surgeon here in Portland whose new partner just came from Vanderbilt University. Stated he would recommend his attending to fix my mitral valve. Anyway I was impressed how organized they made my arrival and surgery go. There was a surgery coordinator who sent me information about lodging nearby and arranged all my appointments. She was great. I think that the Cleaveland Clinic also will be use to working with people coming from other areas.
Another thing I would recommend is to have your hotel or where you stay as near as possible to the hospital. My family really liked being able to come and go easily, it was walking distance to the hotel. I was able to travel in 2 weeks although it was a very long day. I was able to travel first class which really made the trip easier plus good pain medication!!
Let me know if you need any other suggestions or help if you decide to go out of the area. I am very glad that I did.
Kandice