Results of meeting with heart surgeon-VERY DISCOURAGING!!

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Braveheart4


Hi to all of you in the Valve Forum!!
Wow, lots happens in a week!!! I have not written about my meeting with my cardiac surgeon until now, as I was sooooo discouraged and depressed about the outcome, I felt immobilized. I wonder if anyone knows anything about this situation......I was expecting to have a date for surgery set within the next 2-3 months. My surgeon told me I would have to wait one "Surgical Year", before he'd go into my chest again. My last OHS was Aug 4/06 and my Dr. wants to operate in Sept. 07, as long as I don't deteriorate further. He said that there was granulation (healing) tissue all through the operative area and that the risk of operating now was very high. In a year, it will become scar tissue, which is tough, but apparently easier to cut through. Have any of you with double/triple OHS ever have to wait like this??? I haven't any choice, but am terribly upset as my entire summer was ruined last year due to the first operation and long recovery period. Now, I face another "do nothing" summer-unable to travel, cycle, swim laps, or any other vigorous activity....which is my nature. Plus, my TEE report showed "Severe Aortic Regurgitation", I'm short of breath and constantly tired. I wish I could just crawl into a hole and hibernate until September. How bad does one have to be to get this over and done with???
Take Good Care All,
Braveheart4
 
If you were in the US health system, I'd be saying get another Doctor. I don't know that you can do anything about it in Canada. Do you all have an appeals process? Not that it would be any faster, but maybe?
 
Braveheart, I don't know what to say but I'm sorry. Some here have had close repeat surgeries; hopefully they'll post their experiences, which I hope will encourage you.
 
My son had 2 OHS within 24 hrs and just recently his third (just shy of 9 months after the first 2). His docs said that if we did not reop in the first 6 weeks, then it did not matter how long or short we waited. They actually wanted to do the surgery last December or January. He is only 16 so maybe his situation is different, but they didn't act like his age made a difference on the scar tissue. Look for the thread about Brian in the news for a little more info on his story.
I would ask for a little more explanation.
 
Can you get a Second Opinion in Canada?

The Cleveland Clinic has an On-Line Second Opinion Service for around $600 if I remember correctly.

Then there is the option of going to INDIA and having it done for around $15,000 which is WAY LESS than in the USA (and probably Canada). (see thread's about Foreign Hospitals / Surgery in India)

Good Luck!

'AL Capshaw'
 
if all your other options don't pan out, then do your best to hibernate with some measure of glee. read, ponder the sky, breathe, enjoy life as much as you can as every single breath, be it short or long, is a gift.

hope this helps. :)
 
Yes!!!

Yes!!!

Our surgeon had us do the same thing, and he is one of the best pediatric cardiothoracic surgeons in the country/world.

Katie's third heart surgery was in April 2004 when she was 3. Katie's common AV valve (mitral and tricuspid valves merged as one due to her complete AVSD) had developed a severe leak, so she underwent a valvuloplasty. Sadly, we found out at our one month post op checkup that the repair had not held up. (WE had been warned about this because her valve was so misshapen. It was a real blow anyway!:( She hadn't even recovered from that surgery yet, and then we find out it was all for nothing! :( )

When our PC notified Dr. Bove, he, too, said that he wanted to wait one year if possible before going in again as long as Katie's condition did not deteriorate rapidly. He did not state that it was due to granulation tissue, but it could have been. What he did say is that he wanted to give Katie's body a chance to fully recover before undergoing another invasive procedure, but if her ventricles became significantly enlarged, then we would have to go in sooner. This "body fully recovering" could have included the tissue issue - I don't know. Since we were having his opinion on things relayed through our PC, our PC may have just simplified it when he relayed it to us. I didn't question it because I was so grateful that we did not have to turn right around and go back in. (I did e-mail our surgeon just to confirm that he really thought it was safe to wait a year, though, and he did indeed confirm this as long as Katie's condition did not deteriorate!)

WE did have monthly and/or bimonthly cardiac checkups, so we were monitoring her very closely. We were able to wait 15 months before Katie had her next heart surgery (actually surgeries - two in one day, but that is another long story...............sigh!) and had her fontan and valve replacement in July of 2005. Having two surgeries back to back in one day is not the same situation, though. It is an emergency situation, not a wait if we can optimally wait one, and no healing has begun to take place so the tissue is not an issue.

I know you are anxious to get this over with and start feeling better. Katie's sats were averaging around 77 when she finally had surgery. But I also know that you want the best possible outcome. If this waiting period is going to increase your chances of having a smoother re-operation and recovery period, then it might be worth the wait. Having said that, a second opinion never hurts. I have sought out many "second" opinions for Katie; even before her last two for one sale, I sought out another opinion just so I would have some peace of mind.

Sending hugs and vent when you need to. Janet
 
Hi, Braveheart....

So sorry to hear about your news from the surgeon. I sure agree with the others about trying to get a second opinion. I know when I had my first OHS they were going to reoperate right away if the new valve (which is too small for me) couldn't handle the heart's workload. They didn't, but it did not seem to be an issue to do so.

I can understand your concern with your symptoms and the knowledge that your valve has reached severe status.

Good luck. I'll be hoping to see a post where you have managed to get this resolved.
 
Second opinion in Canada

Second opinion in Canada

Although I am not in the same province (I'm in the Province of Quebec, Braveheart is in Ontario) we can get second opinions. The problem is that getting an appointment with a specialist of any kind can take ages!!!!
 
Sorry to hear this. You can get second opinions in Ontario so I suggest you seek one. Perhaps your Cardiologist can refer you to one in Toronto. I have nothing but praise for Toronto General's Peter Munk Cardiac Centre. Good luck.
 
Braveheart & Rachel

Having just had an AVR. I'd be interested to know why you both need(ed) second operations ?

Braveheart - I hope you get your second operation sorted out soon. Perhaps the waiting time will make it less risky ?

Best Wishes

George Montgomery
 
Answer For George

Answer For George

Hi George!!
I hope you are feeling well after your AVR!! In answer to your question-why do I need two surgeries?.....The first one was emergency OHS to remove an infected pacemaker and the wires, repair of my Tricuspid Valve and multiple pulmonary embolectomies. Somehow, I had developed Septicaemia (a deadly blood infection). It started in my pacemaker and spread to my heart valves-Endocarditis-as well as infecting all of my major organs-lungs, kidneys, liver and I had large infective abcesses throughout my entire spine. After I was very expertly treated by the wonderful staff at London Health Sciences Centre, I went home, developed another bout of sepitcaemia and this affected my (previously) perfectly good Aortic Valve, which was chewed up and ruined by the bacteria. Thus, the need for OHS #2 to replace the valve. Ironically, I had been incredibly healthy until the 1st episode, when suddenly, I was "teetering on the edge" of the Great Hereafter. Go figure.... Hope that helps!!
Take Good Care,
Braveheart4
 
Wow you have had a tough time !!

You need to take it easy - I'm keeping my fingers crossed for you.

Like you I felt perfectly fine before my operation. Since then I've had to return to hospital due to bleeding, and my heart is definately still not fully recovered - I seem to listen to check it's still beating !!

Let me know how you get on with your second operation (if you have one).

Best Wishes

George
 
False aneurysm

False aneurysm

To Rachel,
I have just been diagonised after a CT scan with a 'mild 4cm fusiform aneurysm' in my ascending aorta although I had AVR St.Jude 23mm with dacron patch in June 2000. Could this be a false aneurysm as you had? If so do you know what exactly is a false aneurysm and how serious this can be? My cardios seem to think its nothing to worry about but I am concerned since I do experience sob and tiredness on exertion. I would be grateful for your feedback and comments or from anyone else who have had a similar situation with a second aortic aneurysm following AVR and dacron patch. Suggestions on best hospitals for this complication would also be highly appreciated.
ChrisR.
 
Seek a second opinion

Seek a second opinion

Hello Braveheart,

I'm sorry to learn of your need for a second surgery. A second opinion wouldn't hurt. Wait times being what they are though ............. it might take just as long one way or the other.

My journey to valve replacement began in the spring of 1998 and finished winter the following year. The surgery was postponed 3 times that I'm aware of the final postponement on the day of the surgery following pre-sedation. Hopefully things are better and your wait a lot shorter. Somehow from now 'til Sept. doesn't seem so bad. As a matter of fact I was hospitalized for two days just to keep the bed. Probably the most expensive hotel room in Hamilton.

Like yourself I watched my condition deteriorate to the point that standing from a sitting position left me breathless. I think valves are low on the priority list because heart attacks (clogged arteries) can't wait.

I think you'll have to hang in there and hope for the best.

I hope everything goes better than you expect.
 
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