Need 2nd opinion

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Jessie316

Active member
Joined
Jan 29, 2009
Messages
32
Location
Concord NH
I have a post in pre surgery titled been tole it's time for an AVR. Since my follow up appt with my cardiologist on 2/2 I was told that my valve is now only mod stenosised and looks great" I think you might be able to wait until your moms age for your valve replacement ( my mom was 49)". "I'll see you in a year for an echo and check up". I don'tknow if I should just make an appt with my PCP to shout my S/S to her, I am trying to find an adequate 2nd opinion Boston MA or Dartmouth lebanon NH areas and It is just so much info. Little overwhelmed. I'm SOB, past week I have been so tired, Both feet continue to swell, at times hard time to concentrate, I am having at times pain in hands and wrists, I get fluttering pains accross my chest at times on exertion, I feel faint at times and apparatly turn grey and pale, when this happens the whole world feels like a swirl or wave. It took my mom almost 2 years to get a cardio to agree she needed surgery becasue under the test her valve "looked good". I have been actively symptomatic since Nov. I am still attempting to wrok full time as a COTA and MT although some days I wonder how long I can do this when I have to lift patients. I don't know if I can hold on for another year and a half until some one decides my symptoms warretn surgery. I know I need a second opinion I just don't know where to start. Please help and Thank you for letting me vent.:rolleyes:
 
Jessie,
Get copies of your tests and go surgeon shopping. As has been said before, some cardiologists like to wait until your valve hits specific numbers. Surgeons usually want to repair/replace before damage is done to your heart. If you have swelling feet, something needs to happen. Get a surgeon opinions.
 
Hi, Jessie.
We have another member from around your area, Harrybaby666, and he has frequently written about problems he has encountered with cardiologists in the region.
Have you considered making an appointment with a surgeon? You don't have to have a referral from a cardio; you could make one yourself. From what I've read on VR, many members find their cardiologist to be more cautioius regarding surgical timing whereas the surgeons are more likely to recommend quicker intervention.
I'm sorry that I don't have any names to suggest, but I'm sure others will come along and supply some.
Best wishes!:)
 
I second what Mary said. I e-mailed surgeons from L.A. to the Mayo clinic in Minn. and just about everywhere in between. I told them my history, they asked me to have my local cardio send them my last test results and then I had telephone conversations with them. From those, I narrowed it down to two surgeons that I went and met in person (one surgeon actually recommended another to me as being the better fit for my needs) and finally chose my surgeon. It was actually very easy to do it that way. If your cardio doesn't want to send your tests out, go get copies yourself and then get them out.

Don't be intimidated by the process. It really can be quite easy. And I agree that a surgeon is going to be much more likely to act if need be than a cardio.
Keep us posted on your progress.

Kim
 
You are close enough to get a great opinion from a surgeon at either Brigham or Mass General in Boston. Go for it!
 
You are close enough to get a great opinion from a surgeon at either Brigham or Mass General in Boston. Go for it!

100% correct. I agree with Phyllis. My former cardio up in CT would have sent me to Mass General when I needed surgery and a surgeon. I hear nothing but great things
 
I can't say enough good things about the wonderful cardio care I got through two surgeries at Mass General. I seriously doubt more could have been done for me anywhere.

Brigham and Womens is also outstanding. You have access to two of the country's best cardio-thoracic centers so should surely be able to get second, third or however many opinions you need until you feel you have been well informed.

Good luck. Let us know how you are doing.
 
YEP, YEP, and YEP.

I echo the recommendations to contact either Brigham and Womens or Mass. General Hospital in Boston, tell them you want a second opinion with a Heart Surgeon (or maybe one of their Valve oriented Cardiologists).

Harry Baby has been chronicling BAD Experiences with Cardiologists in NH for years.

'AL Capshaw'
 
Got my records

Got my records

Alright guys I got my records from Catholic Medical Center. According to my TEE results My opening is 1.79 my echo a month before was .79, My pressure gradiant was 47% with my TEE and a month before was 38 % with my echo. According to the TEE I now also have mild regurge on my tricuspid and mitral valves, and a mild pleural effusion. I continue with my +2 edema left continues to be worse than right. SOB and occaisonal chest pain that runs down my right arm sometimes to my elbow sometimes to my hand on exertion. At times I have pressure in my neck and head upon exertion as well at varying degrees. My plan is now to make an appt with my PCP and discuss 2nd opinions. Will someone still look at me for surgery to get rid of these symtpoms or do I literally have to wait "till my numbers match ACC reccomendations for surgery". Does anyone have any opinions on if I should make an appt with a cardio speciallizing in valves or directly to a surgeon with these numbers.???????????? YOu guys have been a great help THANK YOU SO MUCH FOR THE SUPPORT!!!
 
My opening is 1.79 my echo a month before was .79, My pressure gradiant was 47% with my TEE and a month before was 38 % with my echo.
Okay, those aren't even close. Those results are like saying you're kinda pregnant, or maybe not. .79cm² is operable at any time, 1.79cm² is usually not even close, unless there is very significant regurgitation. The fact is, you don't know which to trust. You need testing at a different facility. That could give you some real data to go forward with.

However, before you can determine which symptoms go with your valve, you've also got to take care of that pleural effusion. There are many possible causes, only a couple of which are heart-related. As the most probable causes for that are from the lungs (pneumonia, viruses, etc,), you should get that ruled out before you conclude that your SOB, chest pains, and fatigue are from the valve issue. The PE or its cause could be the culprit for those symptoms.

Your GP can probably help determine what's causing the effusion, and maybe clear it up. Then you'll have a better idea which symptoms are cardiac.

If she or he thinks it's heart-related, or you aren't getting any satisfaction, take your test info and head to Mass General or Brigham and Women's as suggested above. They're always in the top ten for valve surgery (and other heart-related problems). There are way too many cardios out there just playing the numbers game. Some are even saying they can hold everyone off until the valve opening is .6cm². Unfortunately, it's not a game of dare, and hearts can be permanently damaged if they wait too long.

Best wishes,
 
The numbers you quoted are a bit confusing and inconsistent as BobH indicated.

FWIW, Effective Valve Area is measured in square centimeters (cm sq or cm^2).

Gradients are a measure of differential pressure expressed in millimeters of Mercury (mmHg), NOT %.

Ejection Fraction is the only number I can think of that is expressed as a percent. The Normal Range for the Right Ventricle Ejection Fraction is something like 50-70% (or 55-75%) ...I need to check those numbers. Anything less than 50% suggests that a heart is not pumping out as much blood on each beat as it should. Good Surgeons will take into account BOTH your 'numbers' and your symptoms.

Was your Cardiologist aware of all the symptoms you described to us? If he was, it sounds like he 'blew you off'.

Bottom Line: It would be best to go to a Major Heart Hospital such as Brigham and Womens or Mass. General Hosp. where you can get tested and evaluated by specialists who 'know their stuff'. You can even "Self Refer", just have copies of your Test Reports and Tapes / CD's / DVD's for their Doctors to preview before your interview.

'AL Capshaw'
 
PCP says

PCP says

So I have been to my PCP. She agrees that all of my symptoms are concerning and that because I do not feel comfortable with the results of my TEE and symptoms that a second opinion is in order. I requested to go see my mothers surgeon from her second surgery. I will be going to Beth Isreal Deaconese in Boston MA. The surgeons name is Dr. Khabaz, he is also a professor at HArvard. Has anyone heard of him?? Thanks for being supportive and giving me an environemtn to vent. I will let you guys know what the results are.
 

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