Myectomy or not??

[progers]

Re: Myectomy or not??

Hi Elizabeth, thanks for your message. WHen was your myectomy? Do you notice any symptoms these days. How fit do you feel? What was the whole recovery procedure like? And do you still take meds?

I think that like you I don't really realise how bad my symptoms are. At times I'm great, but there are recently many more times I'm not. I'm hoping surgery will greatly improve things for me.

All the best from Down Under,

Paul

[paix]

Re: Myectomy or not??

Paul,

Hi! I had my myectomy when I was 33. Before the surgery, I didn't realize how many symptoms I dealt with regularly. After the surgery I felt so much better and had so much more energy, it was quite a gift! Like you, I had a resting gradient that was high (around 125), a septal thickness around 25, and quite a bit of SAM in the mitral valve. I hope my two cents helps.

Elizabeth

[progers]

Re: Myectomy or not??

Hi Reenie, thanks for the nice words again!

FX, I'd love to hear more about how you are feeling and what your experience with the myectomy was. Only 2 weeks out hey? I'll bet your life will be so much better now though. Myectomy really is the proven method for relieving obstruction and providing long term benefit.

I am 34, have asymetric hypertrophy, with a maximum septal thickness of 29-30 mm. I've just had a recent TOE, which shows the mitral leaflet is hitting the septum a little bit down from the top, where it is around 25 mm thick (resulting in SAM and greater obstruction). My resting pressure gradient is around 80-90 mmhg. I have many days where I am symptom free, which allows me to exercise and even go surging for hours on end. Periodically though, I feel quite sick. I'm on atenolol and get times when my BP drops quite suddenly. When its really hot (I now live in Australia), I feel so ill. I also have periods (especially after too much exercise, large meals, alchohol etc.) when I have signs of heart failure (chest pain and even on rare occassions, fluid on the lungs and coughing blood).

In short, even though I am on atenolol (which allows me to have a much greater exercise tolerance), I have resting obstruction and resting symptoms on occassion. There is no medication that can deal with this - dysopyrimide perhaps, but very few HCM specialists like to prescribe this (in fact they won't presribe it here due to its potentially dangerous side effects).

So, I can go on like this for the next few years, but why wait, if an intervention will most likely help? My periodic illness interupts my work (I travel to Indonesia) and I have a new baby on the way mid-year, so I want to deal with this ASAP rather than wait.

Anyway, that's my story. Look forward to hearing more from you.

Best wishes,

Paul

[felixdacat]

Re: Myectomy or not??

Paul, how old are you and what percentage of the time are your symptoms "bad"?
The three treatments for HCM, drugs, ablation, and myectomy are all designed to releave symptoms. They are not a cure.
There may be some validity in the "get it done while your young" approach, but youth also allows you to fully explore the various drug therapies.
What are your symptoms? Describe what "bad" means to you. Also, what are your numbers (gradiant, etc)? Do you have any electrical issues (palipatations, passing out, light headedness). All this information would need to be factored in.
Perhaps you can figure out the time difference properly and give Lisa a call. Maybe your records could be forwarded to one of the HCM clinics in the U.S.
I am 2 weeks out from my myectomy which was done while I was a "young" 45. Even so, it has been a difficult challenge, and at 2 weeks, feels as though I will need the full 5-6 week recovery period. Therefore, it is a decision that you need to strongly research.
Hope this helps.

[Reenie]

Re: Myectomy or not??

Paul, I don't have any answers, but wanted to wish you the best of luck.

Reenie

[progers]

Hi everybody,

I am contemplating doing a myectomy in the next month or two. There is a doctor down here in Melbourne who does them and he thinks that I should go ahead and do the operation. I am usually pretty healthy, apart from periods when I can be very bad with low BP and other symptoms. The surgeon thinks that even though I am ok alot of the time, a myectomy will greatly improve my health: his philosophy is why put it off until I am older, given that I am young and healthy and would recover quickly from the operation. My other option is ablation, but obviously, this is recommended for older people and the benefits are not as proven as myectomies.

I guess my main concern is deciding whether or not this surgeon and his team are truly experienced enough to do the procedure. I constantly read that one should only undergo the operation at a centre with lots of experience. My surgeon has done 20 myectomies over the years, and does about 3 per year right now. He claims that the last 15 operations he has done have been greatly successful.

I'd love some feedback on this. For those of you who have undergone a myectomy, what do you think? How do you feel now?

Many thanks.

Paul