Mitral Stenosis or NOT?

[deek]

I'm 1.5 years post mitral valve repair w/ annuloplasty ring for mitral valve regurgitation and was told that my pulmonary hypertension, based on right heart cath, was/is secondary to mitral stenosis. PH Specialist, Dr. Mclaughlin at the Univertsity of Michigan, gave the impression that the annuloplasty ring was too tight or too small, causing symptoms of breathlessness from minimal exertion, lung congestion, cough, transient loss of vision, a-fib and complete exercise intolerance.

Anyway, shortly after RHC, cardiologist ordered stress echo which prompted her to call me directly, telling me that it was her opinion that I needed surgery on my mitral valve again, probably a replacement.

Surgeon ordered TEE and said my MPG was only 5 and said he didn't believe it was/is mitral stenosis. I have a consult with him on the 3rd of November...but this is all he has said thus far. When cardiologist called him he got very defensive with her. She has since referred me to a local surgeon for consult (next week) and has also referred me to Dr. Gillinov at Cleveland Clinic. Kind of in limbo here...not sure what the heck to think???

As my cardiologist has said, the numbers don't lie and in terms of assessing mitral stenosis severity I fall within the moderate to severe range, plus am severely symptomatic and not responding to medical treatment. Any MSer's out there? All I know is that I'm extremely symptomatic,

All thoughts are welcome and greatly appreciated prior to my surgical consults.

Thanks MUCH,
Dee:

 

[Michelle D]

I don't know what to tell you regarding those numbers, I did have a small ring put on my valve but it is not stannic anymore. If you call Dr.Gillinov's team at the Cleveland clinic and send them your records they can tell you what you need to know. Also I don't know if a replacement is necessary, it seems the can loosen the ring, just a hunch. If anyone can take care of you it is Dr. Gillinov. Call them now regarding sending over your records. Your symptoms seem like you need something done asap and you don't want to end up needing emergency surgery at a local hospital if it's a redo. I live in Florida and was already scheduled at CC and my insurance already approved it so my local ER had the CC fly down in a jet to pick me up when I needed it sooner. Good luck.

 

[Duffey]

I don't have mitral stenosis. My replacement was for aortic stenosis, but I have one or two thoughts about the process you're going through. If you don't mind, I'll share.

I would venture a guess that the TEE would be more accurate than a stress echo. So if you were given values of 9 with one, and 5 with the other, the measurement probably lies in between.

Cardiologists are notorious for taking a wait and see attitude while surgeons generally want to operate before more damage occurs. If your cardiologist thinks you're ready for replacement, I would consider that significant.

Finally, getting a second opinion, particularly from Gillinov at CC, seems to me to be exactly the right course of action. I know it's hard to deal with the uncertainty, but it seems that you're doing exactly what you need to do. November 3 isn't too far away, and hopefully you'll know more after your consults. Do you have an appt. with Gillinov?

 

[deek]

Thank you both. My records have all been sent to Gillinov and my cardiologist was calling him direct on my behalf...an appointment is in the works. Those were my thoughts too regarding cardiologist. Right now my surgeon, cardiologist and ph specialist are bumping heads...kind of an ego thing going on between two big heads at U of M. The only one that truly has my best interest at heart is my cardiologist and that's why she is referring me to Gillinov. My situation is quite complicated, I know, and she believes we need to step it up a notch and it is her opinion that he is top. In regards to the TEE, Stress Echo and RHC...I agree, probably some where in between...but the stress echo holds relavant as my symptoms are exacerbated by minimal exertion and my numbers increased greatly with exercise. Currently on massive doses of Lasix, Aldactone and Metroprol (for fluid and to keep heart rate down) but it is doing nothing for symptoms. Very congested, coughing all the time and short of breath; it's like I fill up like a bath tub when I do anything of exertion...even stress increases it. Again, thank you for your thoughts...I welcome ALL.

 

[Michelle D]

Just my experience but it took forever to get an appt when my cardio was setting it up but I finally just called myself and since they had my records they set my appt that same phone call. You sound like you need surgery sooner than later so I'd call and set it up immediately. Then if you need to push it back so be it. They can always use your canceled date for an emergency.

 

[Eva]

So sorry to hear this, Dee.

I am confused and do not know what to advise other than you won't go wrong with CC. I called one surgeon at CC before my surgery and I was surprised that the surgeon himself answered the email I sent to his assistant the next day and called me on the phone!! They are all great!

I shall keep you in my prayers hoping this can be resolved soon.

Plase keep us informed.

 

[ALCapshaw2]

Just my experience but it took forever to get an appt when my cardio was setting it up but I finally just called myself and since they had my records they set my appt that same phone call. You sound like you need surgery sooner than later so I'd call and set it up immediately. Then if you need to push it back so be it. They can always use your canceled date for an emergency.

When I was looking for second opinions, I was able to just call the offices of the Surgeons I was interested in consulting, telling them my situation, and was given appointments in a Very Short Time (one week). They asked me to either send or bring copies of my last Echo Tape and Cath CD, along with the written reports.

FWIW, I know of someone with similar MV numbers but less severe symptoms (mostly SOB above a certain elevated Heart Rate). Doctors recommend waiting and watching. Risk is a factor.

Obviously your symptoms are a concern so getting the opinion of a very experienced surgeon is wise.
One question to ask the surgeon is his assessment of your Risks and an evaluation of the Risk / Reward ratio.

'AL C'

 

[heartdoc]

Dee,

Your cardiologist carried out a very appropriate work up. I agree with her that the presence of symptoms give a strong indication for a redo MV repair. In experienced hands, there is a pretty good chance that the valve could be repaired rather than replaced. Ask about a minimally invasive approach to address your problem. It'll make your recovery faster.

Heartdoc
www.bigappleheartsurgery.com