I'm New - Have Questions.

[bbbdirector]

Hi Everyone:

I found this site almost a year ago. I emailed one member - who promptly answered me, but I did not join the site. Many of my questions were answered by just reading answers to others questions that I found on this wonderful site.

Now I have questions that I did not find an answer to by just reading - and I have spent many hours reading about everyone's experiences on this site.

I was told about 3 or 4 years ago (after recovering from passing out from fluid build-up in my lungs that was relieved only after a 10-day hospital stay where it took a percardiac (sp?) window or they cut a slit in the sac around my heart to release the water build-up and restore my normal breathing) that I have aortic stenosis and would need a valve replacement. I was told that my AV has calcium buildup and the opening was .8.

About a year later, I went for a 2nd opinion - he confirmed the 1st opinion but said that it was not something I had to do today - but it should be done within 6 months. That was about 2 years ago - I was just plain afraid to get surgery on my heart. About a year ago, I finally went in to begin the process of getting ready for surgery. The cardio, at my request, ordered a stress test. I passed the stress test, so the he told me that we could put off the surgery.

Earlier this year I had an episode when I was out of town where I started getting unusually short of breath, felt dizzy, could not sleep lying down, and my blood pressure increased. When I finally went to the emergency room, my blood pressure (which - with the medicine I take - is usually under 120) increased to over 200 and there was fluid in the lining of my lungs. The echo revealed aortic stenosis of .8.

I returned home - was given a TEE test and heart cath. The surgeon's recommendation was that the aortic stenosis was severely calcified w/regurtitation and at .6; and the mitral valve was moderate - and that I need AV and MV replacement. The surgeon recommended the St. Jude valve. I told the surgeon that I wanted to go to Washington, DC for surgery because all of my family live in the DC area and it would be better for me -and them.

I was recommended to a surgeon in DC. From what I understand, the final results of the cath and one other test (MRI - I think) measured the AV opening to be 1.2 (not .8 or .6) - and I understand that it is critical only if the opening is below 1. And that surgery was too risky for them to perform because the radiation therapy I received for the treatment of Hodgkins Disease some 30 years ago, caused my aorta to become calcified - which means that it is hard as rock and it would be difficult to cut through the aorta to get to the valve, and if they were able to find an area soft enough to cut through - there was a high risk that calcium pieces would break off - go through my blood stream and cause a stroke.

The surgeon in DC recommended that an option for me would be to get a 3rd opinion from the Cleveland Clinic because they have more experience with my type of problem; however my cardio back home told me to just return home and he will continue to monitor me.

I am sorry to be so long-winded. I am confused in one way because I was told by a number of doctors that it was critical that I get valve replacement; should get it done before my heart muscle becomes damaged from being overworked; or I pass out again and never come back - and then when I agreed to get surgery, traveled over 1000 miles to get it (spent days working on an appeal to my insurance company to approve out-of-network benefits - which they did) - only to be told that I need surgery; however, the risk is too great.

In another way I am very, very grateful that I did not get the surgery back home and end up as a stroke victim.

Please tell me - what do you think? Have any of you ever been told of this risk of the aorta being too hard to operate on? Of the risk of stroke because of calcium breaking off? The last surgeon's office told me that they would send my records to the Cleveland Clinic for an opinion; however, my cardio back home told me to wait on that - and come see him as soon as I return home in the near future.

Sincerely,
Ms. bbbirector

 

[lynnconnolly]

BB - I don't have any answers for you but having read your post I just had to say how badly I feel for you being stuck with this awful dilema. It can't be easy to make an informed decision when everyone you see tells you something different. Especially when it's a 'damned if you do, damned if you don't type decision'.

For what it's worth, I think if I was in this awful position, I would try to go to the Cleveland clinic but I would make up my mind before I went that whatever they advised, is what I would do. That's because I don't think it's a decision that I could make - as in, none of us are doctors, we are all biased by our fears and therefore when ultimately such a huge decision has to be made, maybe we, the sufferer, aren't always in the best position to make it.

That sounds odd I know given that we all want autonomy over our lives, but that is truthfully what I would do. I don't believe this is a decision you should have to make, so if you make up your mind that whatever Cleveland say you should do, is what you'll do, it will take the burden of that responsibility off you in a way. Does that make sense?

I wish you all the very best in whatever decisions you and your medical team make and please keep us posted in how you go.

Lynn

 

[ALCapshaw2]

Welcome to MY World Ms. BBB -

We have at least a dozen Radiation Damaged Heart Members, mostly from treatment for Hodgkin's Disease, including myself. Do a SEARCH (see Blue Line at the top of the page) for keyword "Radiation" or "Hodgkins" and you will find links to our previous posts.

I had ByPass Surgery at my Local Hospital (Huntsville Hospital in ALA). Radiation was suspected as contributing to Coronary Artery Disease. Did your Angiogram / Cath indicate stenotic arteries?

Several years later I developed Aortic Stenosis which finally dropped to 0.8 sq cm and Mitral Valve 'Calcification'. I went to UAB, the University of Alabama at Birmingham, for AVR. NOTHING was done to my MV because it did not meet the 'surgical recomendation limits' at the time. SOME Surgeons are now offering Radiation Damaged patients the option of replacing BOTH valves at the same time, even if the MV isn't quite there yet due to recognition of the progression of the disease. I suspect that My Surgeon (whose specialty is Transplant Surgery) did not fully appreciate the level of Radiation Damage beforehand but DID have the skill to deal with what he found after 'getting in there'. He implanted a St. Jude Mechanical Valve (instead of the Bovine Pericardial we had agreed to previously) because the mechanical valve will hopefully 'last forever'.

While at UAB, I overheard Dr. David McGiffin making rounds and was Highly Impressed with his manner and the respect he gave to and received from both patients and nurses. I consulted with him and it was immediately obvious that he had more understanding of Radiation Damage off the top of his head than any Doctor I had seen before.

The Radiation Guru at The Cleveland Clinic (#1 rated Heart Hospital) is Dr. Bruce Lytle who is currently the Chief of Cardiothoracic Surgery at CC. Our member "Perkicar" went to him and is another Radiation Survivor.

When the time comes for my MVR, I have decided upon the relatively new On-X Mechanical Valve (introduced in 1996) because of the technological advantages it offers (lowest propensity for clot formation and less damage to blood cells) over older valve designs (St. Jude 1970's and it's spinoff designs ATS and Carbomedics 1980's?). See www.onxvalves.com and www.heartvalvechoice.com for more information.

Catheran Burnett, RN, is the Manager of Education and Promotion for On-X (along with being a former surgical nurse at Baylor) and can direct you to other On-X experienced surgeons around the country. Dr. Wolfe in Atlanta is one, along with 3 surgeons at Emory Crawford Long Hospital (affiliated with Emory University I *assume*). There is a Female Surgeon in Delaware who has extensive experience with On-X. I'm not sure about D.C. proper. Ask Catheran at 1-888-339-8000 ext. 265 or [email protected]

On-X only recently received approval at Cleveland Clinic (they pick 2 mechanicals and 2 tissue valves for general use at their facility, based on competitive bids). Dr. Pettersson (sp?) has implanted over 50 On-X valves and is one of their Best Surgeons. See posts by "ctyguy" who was one of his On-X recipients.

You may also want to discuss the option of receiving BOTH AVR and MVR at the same time to avoid the necessity of another surgery and the compound risks from additional scar tissue.

See the STORIES section of VR.com and look for Johnny Stephens story. He received both AVR and MVR in one operation and is a fellow Radiation Survivor.

Bottom Line: Valve Replacement Surgery on Radiation Damaged Hearts IS survivable as shown by the dozen or so members here on VR.com Note that ALL of the Radiation Survivors who came to VR.com before surgery SURVIVED and THRIVED! The most important consideration is to choose a highly experienced Heart Surgeon who are typically found at the Major Heart Center Hospitals.

Please feel free to ask any and all questions that come to mind as your progress in your journey.

Best Wishes,

'AL Capshaw'

 

[ctyguy]

BB - I had Aortic Stenosis due to a bicuspid valve with significant calcification. My surgery took place at the Cleveland Clinic and I give them extremely high marks. They do more heart procedures than any other hospital in the US.

What suprises me about your post is that they did a stress test on you when they had a reading of .8 on your valve. I was .9 and my Cardiologist wouldn't do one on me, thought the risk was too high. The fact that your having symptoms tells you that you need to get this addressed ASAP. I was also showing symptoms but I didn't realize it was a heart related issue. When I did go to my cardiologist and he revealed my issue to me I was pretty well floored by it. But I took the initiative to get on the phone the next day, set an appt in Cleveland with another cardiologist and also contacted one of the surgeons. Gosta Pettersson is who I contacted and he performed my surgery. He does about 300 valve repair/replacements a year and seems to attract alot of the more complicated procedures. All the surgeons there are very good, to be on staff there you must be, but I partial to Dr P due to his demeanor and bedside manor. I went from initial diagnosis to surgery within 15 days so its possible to get this taken care of quickly.

I had both Pericardial Effussion (fluid around the heart) and Plurisy (fluid around the left lung) post-op. Fortunatly with anti-biotics (I had an infection), and some pain killers both passed within a few days. The sac around your heart will be cut open when they perform the procedure and they don't re-seal it. I found that to be an interesting detail. They told me that sac doesn't serve much purpose. But I still had some fluid post-op and the body absorbed it back within a few days.

I wouldn't worry about the calcification of your valve in regards to something breaking off during the surgery. Keep in mind your on the heart-lung when they do the valve portion so there is no blood flow in the valve to carry anything to the rest of your body. I also had severe calcification on my aortic valve and evidently a big chunk of calcium on my mitral valve which Dr P promptly scraped off. Neither were an issue. Now it it breaks off BEFORE the surgery then certainly stroke is a possible result, hence the need to get this addressed ASAP.

Best thing you can do right now is contact C.C. if thats what you want to do, get an appointment and get the procedure scheduled, waiting isn't helping you physically or emotionally.

Best of luck, keep on posting as you go, lots of folks on here Im sure will be by to give their 2 cents as well.

 

[Phyllis]

Welcome, glad you decided to join and speak out. I would definitely follow the D.C. surgeon's advice and get an opinion from Cleveland Clinic sooner rather than later. There are many Hodgkin survivors here and I am sure they will be along soon. Wishing you the best,
Phyllis

 

[Ross]

Sounds to me like damage has already been done and postponing this much longer may soon cost you your life. Get that consult at Cleveland and take action immediately.

 

[WayneGM]

Welcome to the VR community. Glad you decided to join us, although sorry about the circumstances.

I'm surprised your Cardio suggested you could put off surgery because you "passed" the stress the test. I passed my stress test, too, much to the surprise of my Cardio (I was asympotomatic) but everything else (echos, cath, etc) all pointed towards surgery so that's what he continued to recommend. Personally, if I were you, I'd be listening to the D.C. surgeon and arranging for that 3rd opinion at the Cleveland Clinic. At the end of the day, if surgery is ultimately inevitable, I'd rather be too early for it than too late. Best wishes and good luck.

 

[Donnchadh]

Sometimes even the best Carios don't know what their talking about.
My first appointment with one of the best cardios only told me of my BAV.
Didn't even mention the "Markedly enlarged aorta" which was on the report.
My Second Cardio was concerned more about my "Enlarged Aorta" its "Only 4.8cm lets wait and see.
After more research I went straight to a surgeon who said both valve and ascending aorta were going in the bin and how soon do I want surgery???

I am now on the waiting list for "Elective Surgery" Cant work or do anything other than walk and "Lose more weight" but not urgent enough to be put straight in.

This just makes the waiting even harder.

I was asymptomatic until about 3 weeks ago and now having episodes AF and increasing breathlessness and still on the waiting list

Im of the oppinion now of just find someone to do the surgery if its inevitable.

Best of luck

 

[Mary]

Hi and welcome!

I'd get an opinion from Cleveland Clinic and go with their recommendation.

 

[thenewmarket]

I wouldn't sit back and "wait" on someone else to get your information to Cleveland Clinic for a second opinion. My husband was told to wait on surgery and we didn't agree. I took matters into my own hands, gathered all the information, and sent it to CC quickly! As in all aspects of life, the squeaky wheel gets the grease and I think it is time for you to squeak loudly! Get on the CC webpage and you can follow their directions. I took a more direct approach because I was determined to get the best help possible. Call CC if you have any questions. They will direct you to someone who can assist you.......it is a huge place but it is full of people who truly care!

 

[katie1234]

Welcome to the site. I'm sorry to hear about your situation, but wanted to offer you the example of my mom who was in a similar position to yours last year as further proof that people get through this. She had radiation for Hodgkin's disease in about 1974 or so, and remembers them telling her at the time that "you might have some heart problems down the road". They were right!

By last year, her aortic valve was severely stenotic and calcified, and her mitral was moderately stenotic. We went to a local surgeon on Long Island, he said he didn't have much experience with patients with radiation-induced valve disease, and we said okay thanks bye! From the info I got on this site from Mr. Al Capshaw, Perkicar, Mr. Johnny Stephens, and other radiation-induced valve people, I found out a lot about radiation and heart disease and about Dr. Lytle at the Cleveland Clinic, who, as Mr. Capshaw says, is the radiation guru. I contacted his staff, they were very nice, and said that we could send all of my mom's records to him and he would look them over and (for a fee, i think) give us some recommendations. By this time we had gotten in contact with a top surgeon in NYC who had a lot of experience with radiated hearts and we decided to go with him. My mom wanted to stay close to her family and she really liked this guy.

So she went for the cath the day before the surgery, and they found that her aortic was in the moderate range (I think 1.2 or something) and her mitral was in the mild range. They called off the surgery, and decided to do more tests to see what the deal was. As you have found out, different methods of measuring valves and heart function/shape/size, etc., can produce different results. This is, as you have found, so confusing. They ended up doing a TEE and found that the valves were ready to be replaced, so they rescheduled the surgery for the end of that month. The surgeon said that a real big factor in deciding when to have the surgery is whether or not you have any symptoms. That is, if the measurements are small enough, they'll generally do the surgery regardless of symtpoms, but if you start to get symptoms, they might do the surgery even before the valve meets technical criteria (as long as they assume it is headed in the wrong direction). It's really important to the have the surgery done, and to have it done by someone experienced with your kind of heart condition and radiation history. I would say call up CC and remember that a lot of people have gone through this same thing and can help you out.
-Katie

 

[Rick]

BBB,
I would most certainly go to CC or another highly experienced center and not back to the local cardiologist. Get the best help for yourself at this time.


Al,
Why do you say that Cleveland Clinic selects valves based on a competitive bidding system? I would think they'd pick based on the best prospects for their patients. Also, do you know what those 4 valves, two mechanical and two tissue, are?

Rick

 

[ALCapshaw2]

Al,
Why do you say that Cleveland Clinic selects valves based on a competitive bidding system? I would think they'd pick based on the best prospects for their patients. Also, do you know what those 4 valves, two mechanical and two tissue, are?

Rick

That's what I have been told by a representative of one of the Valve Manufacturers. I am also told that is a common practice at many of the larger (and smaller) hospitals. My Local Hospital is a very good Regional Hospital that does a LOT of ByPass Surgeries and some Valve Replacements. At one time they only offered the St. Jude Mechanical and CE Bovine Pericardial. I know they are now also offering the Carbomedics Mechanical (but don't know if they still offer the St. Jude).

On-X has recently been added to the option list at Cleveland Clinic. I would *guess* that increasing patient requests had something to do with that decision. I *assume* that St. Jude is the high volume mechanical valve at CC.

At the Mayo Clinic, I would guess that St. Jude is also a major supplier. I KNOW that some of our members have received Carbomedics Mechanical Valves at Mayo. I also know that patient requests for the On-X Valve at Mayo have been declined based on member reports on VR.com.

I KNOW that Cleveland Clinic promotes the Carpentier-Edwards Bovine Pericardial Tissue Valve. I don't know what their second choice is for tissue valves.

 

[Philip B]

Options?

Options?

Given the kind of problems you're facing with the restricted flow of your aortic valve, I don't believe anything would be gained by putting off surgery and being monitored by your doctor. We know the consequences of doing nothing when a problem can be fixed; those consequences are not good.

There is an inherent risk in OHS. Yes, having calcified tissue break loose and cause problems is a risk. When considering this risk it's important to remember that it is common for defective valves to have calcified tissue. I suspect the folks at the Cleveland Clinic deal with this issue in a huge number of the valve replacement surgeries they do.

I agree with the advice others here have given; visit with the folks at the Cleveland Clinic and get the problems with your valves fixed. Waiting simply increases your level of risk.

-Philip

 

[Curtsmum]

Best of luck, hope all goes well for you, take care.

 

[Dawn-Marie]

Hi Ms. BBB - Welcome to this site. I understand how really hard and confusing it is to you to be going through all this and not knowing what is the best thing to do. I think i'd go with what others are saying and go to Cleveland Clinic. They are one of the best hospitals for OHS. I need to have my aortic valve replaced and i would go there except for the fact that it's impossible for me to travel there. At least you can consult a doctor there and hear what they have to say. Best wishes, Dawn-Marie

 

[ALCapshaw2]

Ms. BBB -

I'm concerned that we have not heard back from you.

You wrote that you are worried that your Risk is Too High for surgery. That kind of comment is probably to be expected from a surgeon who has NOT had much experience with Re-Do's or Radiation Damage which both create a lot of Scar Tissue.

EXPERIENCED Surgeons KNOW how to deal with that scar tissue and are NOT concerned. I just received a private e-mail from another Radiation Damaged member who has been Surgeon Shopping in Boston where she met 2 or 3 very knowledgable and capable surgeons.

They told her that there would be NO debris in her arteries by the time they reconnected her heart. They have ways of Collecting this debris (and implied that ANY experienced surgeon would be capable of handling this issue). MINE WAS!

My surgeon may not have known exactly what to expect from my Radiation Treatment, but once he got in there, he was able to successfully replace my Aortic Valve. A recent TEE showed it was "well seated with NO Leakage" AND, my Mind was Clear and Sharp as soon as I awoke from the anesthesia.

Bottom Line: You just need to find a surgeon with enough experience dealing with Scar Tissue and he should be able to successfully replace YOUR Aortic Valve as well.

Please let us know how you are progressing in finding proper treatment. Waiting and Watching with your Symptoms at this point is counterproductive.

Remember the famous words of the 'Grand Dame' of VR.com, Nancy, whose signature line boldly says:

"Never Give In and Never Give Up!"

There is HOPE. YOU can do it, just as we did.

'AL Capshaw'

 

[Jkm7]

Totally agree. I was a re-do and my surgeon (same as did the first) at Mass General Hospital said he expected no problem with scar tissue and was very confident about a good outcome. He was right. I am now 8 weeks post op and (so far) all is well. I woke with full awareness, very quickly, and when I asked him at my post surgery check up about my scar tissue, he said it was not problem at all. Routine stuff to the top surgeons.

 

[brd]

Just reading through this thread I concur that you have received some great advice In the hands of an experienced surgeon all these things we worry about are things they deal with every day. I am a radiation survivor too. I'm looking forward (yes, REALLY!) to surgery this summer in Boston.

One thing I would add is that Johns Hopkins is one of the best hospitals in the world and quite close to D.C.. You might want to check that out.

It is my personal belief that post-radiation patients should seek care in one of the top rated hospitals and I hope this is possible for you.

Best wishes to you, Barbara

 

[bbbdirector]

Thank you all for your comments and recommendations.

Thank you all for your comments and recommendations.

Hi: Thank you all for responding to me - your comments and advice have helped me to calm down some; mainly, I don't feel like I am the only one who has gone through what I am facing now. I contacted my cardiologist back home and he agreed that we need to get a 2nd opinion regarding surgery. He suggested the Robert Wood Johnson Hospital and the Cleveland Clinic. I told him that I prefer the Cleveland Clinic - so that is where I will seek a 2nd opinion from. Will keep you posted.

Thanks again.
Ms. BBBdirector