Symptoms worse for the last two years - septal myectomy?

[the search for moderation]

I have tried every dosage of metoprolol...to no avail. Still sob, dizzy spells etc...haven't passed out but feel crummy most of the time.

Finally made the 940 mile trip to mayo after being diagnosed three years ago. (I should have been coming every year for a check up.) I saw Dr Ommen today and I will try 120mg of verapamil and if it doesn't work I will be scheduling appt with Dr. Dearani for the myectomy.

I have a consult tmrw with Dr. Dearani to discuss a possible mytectomy. I know that numbers alone may not be the deciding factor but I wanted to throw some numbers out there and see if anyone would comment on what they feel like with their numbers. What constitutes this septal myectomy surgery? A "large" septum? Gradient?, SAM?

Mine is the following:
Septum: 18mm or 1.8cm
Gradient at rest / valsalve = 44 mm Hg; / 77 mm Hg
I do have Systolic anterior motion of the mitral valve leaflets. This is all the numbers I can think of for now.

I know these numbers and how people feel may not be a direct indicator for surgery but I guess I am just looking for someone to tell me "Yea...my septum was only 13 and my gradient was only 30 but I had major symtpoms" or maybe some one might tell me "your being a big baby...your numbers should be worse than that before you consider surgery."

I really am tired of the sob, fatigue, dizziness and not being able to climb stairs or an incline without being give out and very winded. I no longer exercise due to the symptoms from HOCM.

Thanks ahead of time for all the information and encouragement.

[LindaSo]

Re: Symptoms worse for the last two years - septal myectomy?

OK, my septum was 1.6, gradient was 30/136. I had SAM and I felt pretty bad. I was on max dose verapamil and very symptomatic. If you are being a baby, then so was I. It's all about symptoms with an obstruction, not the numbers.
Good luck!! I'm sure your appt with Dr. Derani will be very enlightening.
Linda

[Dave-CT]

Re: Symptoms worse for the last two years - septal myectomy?

I can relate for sure. I sometimes get really bummed out by the symptoms... not being able to walk up stairs or even uphill, extreme fatique, etc. I have a septum of 2.7 cm and gradient of 70 at rest (not sure what it is with exertion as they didn't even do a stress echo afterwards.) Fairly large, both. Its strange though, when first diagnosed I wasn't as nearly affected as now; it appears that even with those large numbers the symptoms weren't so pronounced . 2 years ago I used to go up 2 flights of stairs every day at work without a thought; I don't even think of attempting that now and am planning on going for a myectomy soon. As Linda says its not just about the numbers. If the Mayo drs. think that a myectomy is warranted, then I'd be sure it is. (Being on the east coast I go up to Tufts).

All the best,
Dave

[Cynaburst]

Re: Symptoms worse for the last two years - septal myectomy?

My septum and gradient were both larger than yours, but the bottom line is, they don't go by numbers. It is all about how you feel, and whether the meds are addressing your issues. Noone else has walked in your shoes. A small gradient can yield large symptoms, and a large gradient can cause no symtoms. It is all individual.

I know that Drs. O and D will leave the ball in your court. They will not make the decision for you. You will have to decide how poorly you feel and whether you feel that it is time to go forward with the surgery or whether you are ok with the meds. And you can decide to try the meds for now, and then to have surgery in another year. They will still be there. No pressure to decide quickly.

It took me about 4 years of worsening symptoms and trying various meds to decide to have surgery. And I know that Dr. Ommen will just lay out your options and let you make the final decision.

I had surgery at Mayo and couldn't be happier with my choice. If you want to read my blog about my surgery and stay there, here it is:

www.cynthiassummeradventure.blogspot.com

You are in great hands whatever you decide to do. Feel free to PM or write me directly with any questions.

[DianeE]

Re: Symptoms worse for the last two years - septal myectomy?

I was right where you are back in March. I thought it would have been so much easier if I could just get a doctor to tell me flat out you need this surgery NOW. The best I could get was Dr. Lever at CCF asking me how much longer I wanted to go on not being able to do simple things I used to love to do just a year ago? My decision was clinched when I asked Dr. Smedira if he was confident he could do enough for me that I would feel as " fixed" as I could be, all the while knowing surgery does not make one's hypertrophic cardiomyopathy go away. He assured he could. But the final moment of truth came for me when my first grandchild was born. I could only stand and hold her for a few minutes before swaying with a 7 lb. baby winded me to the point I would have to stop. That was where I had to draw the line.

I am coming up on 6 weeks post surgery and already can manage two flights of stairs with very little sob. That was impossible prior to surgery. I am confident other symptoms will be disappearing as my recovery continues. It's not an easy decision. But I got tired of trying to tough it out and decided I had to take any opportunity I could for an improved quality of life. I think I made the right decision but will know more after I am fully recovered from the surgery in a month or two.

Diane
Myectomy CCF
May 2012

[scottonbike]

Re: Symptoms worse for the last two years - septal myectomy?

Hello

The thing that really helped me was actually listening to my heartbeat. All I heard was a whooshh whoooshh sound. Then I heard a non hocm heart and I was suprised at the difference.

Scott

[the search for moderation]

Re: Symptoms worse for the last two years - septal myectomy?

Thanks for the replies. When I read my results the septum actually measured 17-18mm. I talked to Dr. Dearani today and he actually told me that I would benefit greatly from this procedure and that he usually don't tell a patient this right off but he felt that I need the surgery sooner rather than later...actually he said "you need this surgery". I also had the exercise test earlier today and before the test I had a pulmonary function test and the second time I tried to blow, the tech said "all you got" as i was coughing and blowing i remember getting lightheaded then I woke up on my back looking at the ceiling. They helped me up and I rested for a few minutes and they told me that I didn't have to do the treadmill part but if I was up to it that I could. I opted to try and less than 6 minutes into it, i got light headed and my bp dropped to a point that they didn't feel comfortable and stopped the test.

My wife and I will be heading back home (13-14 hours) in the morning and discuss the surgery. He said that I can try the 120 mg of Verapamil but didn't feel that I would benefit from it. He did want me to try it but if it doesn't work and I want to have the surgery then give him a call.

Other than the "Myectomy pre-op checklist" that Ipecac wrote...what other guidance can someone give me?

Thanks

[Dave-CT]

Re: Symptoms worse for the last two years - septal myectomy?

Thanks for the update. Lets keep the conversation going since we're in similar spots right now and I'll be very interested to hear what you have to say. The folks up at Tufts are recommending it but not definitely not putting on the thumbscrews. As Diane noted it would be so much easier if they just said "You need this NOW."

Scott... what you said about listening to your hearbeat... one time this doctor listened to mine and called it "your dishwasher there".

Cheers,
Dave

[rgong]

Re: Symptoms worse for the last two years - septal myectomy?

I talked to Dr. Dearani today and he actually told me that I would benefit greatly from this procedure and that he usually don't tell a patient this right off but he felt that I need the surgery sooner rather than later...actually he said "you need this surgery".

Other than the "Myectomy pre-op checklist" that Ipecac wrote...what other guidance can someone give me?

Thanks

Glad you got the confirmation you were looking for. No need for me to repeat what's already been said and what you now know (but I will anyway ) -- you don't have to wait until the symptoms from obstruction are debilitating to have the surgery. I was similar to you and LindaSo -- septum was "only" in the 1.7-1.8 range, gradients weren't off the charts ... but after meals, everything went to h*** for me, with several near syncope episodes. Turns out I also had significant SAM as you do which made me feel worse than what my numbers may have indicated. Meds could only do so much, which wasn't much by the time I had surgery. What clinched it was a conversation with Lisa in which she pointed out I was likely to meet my demise from blacking out and hitting my head on something before dying from heart failure.

Others will chime in with pre-op guidance ... here's some "big-picture" things to think about:
- prepare for an extended absence at work, generally on the order of 8-10 weeks. That includes any financial implications. I know some folks don't have the leave or insurance that allows them this kind of time, so you may need to account for this. (Some go back in 6 weeks, but why rush back if you don't have to?)
- prepare family members and/or others in your household for the condition you'll likely be in when you come home from the hospital. You may need a lot of assistance with basic tasks the first week or 2. And at the very least, if you want to go anywhere, someone will have to drive you for 6 weeks or so.
- plan to go slow and steady for your recovery. No need to rush. Do everything they tell you to do for your recovery (walking, inspirometer, etc.) but don't overdo anything. Slow and steady wins the race. Measure your progress in weeks and months, and not days - there will definitely be days you will feel setbacks - but over a long period of time, you should see steady progress.
- manage your own expectations. There are all sorts of accounts on this msg board that range from very difficult recoveries to one guy I recall feeling well enough to consider running a 5K just weeks afterwards. Definitely do *not* anchor your expectations for recovery and outcome on that end of the spectrum. Everyone is different, YMMV, etc., but nonetheless there is a good probability - certainly better than a 50/50 chance - that you will experience noticeable relief from your symptoms after you fully recover. I know scottonbike has mentioned it, and I also thought prior to my surgery, "if the myectomy merely halts the progression of my symptoms, I will consider it a success." At least in my case, my expectations were exceeded.

Best wishes if you decide to go forward with the surgery. You'll be in more than capable hands at Mayo and you'll have bunch of people rooting for you here on the msg board!

[DianeE]

Re: Symptoms worse for the last two years - septal myectomy?

rgong you are so right about managing one's expectations. This is crucial when it comes time for recovery. Like rgong suggested, it is easy to get caught up in the great success stories you read here on the boards. I remember very clearly telling my friends and family that since I am an extremly healthy person in good physical shape (except for this little HCM problem) I was going to be the poster child for myectomy recovery. I was sure I would be up and walking around the halls of the hospital in record time. When that didn't happen and I started developing a few complications (nothing CCF hadn't seen before) I was really discouraged. While patients 20 years older than me were walking the halls with relative ease, I was left breathless just trying to get to the bathroom on my own. Recovery at home is going well according to my doctors but I have had a few really bad days and there is no way I would consider running a 5K!

The point is to read all you can on these boards --the good and the bad. Be armed with knowledge and don't assume anything. Don't plan for your recovery to span a certain timeline or go a certain way. Keep a positive attitude and don't be discouraged if things don't go exactly as you hoped. You are in great hands and will be well taken care of medically. You also have found a great support group on this board. Use it whenever you need it.

[the search for moderation]

Re: Symptoms worse for the last two years - septal myectomy?

Thank you to all who responded. Great guidance. I feel certain that I am going to have the surgery but as mentioned here I will have to get my finances in order and verify how much sick leave I have. Anything over 4 weeks will start being paid at a reduced rate but that is really meaningless to me compared to taking the time I need to fully recover. I don't know when yet. I will give the Verapamil a month as suggested but I know that it will not make my obstruction go away and that seems to be causing most of my problems. This may be a silly question but does anyone have any suggestions on time of year to go to Mayo for myectomy. I live in the south and traveling in the winter months...i'm assuming would be troublesome in Minnesota??? Also, i believe i have read on here that flying is the best option when you are going to have the myecomy. Why is this? Is the riding in a car too bumpy? Even if I flew, I would have to ride 2 1/2 hours in a car after the flight to my home.

Thanks again

[Cynaburst]

Re: Symptoms worse for the last two years - septal myectomy?

It is best to have surgery when the weather is milder so that you can walk outside during your recovery. And yes, Rochester gets cold. I think that the best time to have surgery there is between March and October. But April through September would probably be even better. I had mine in August and that was great. I have been there in October and November, and it was not freezing, but cold enough that I needed a coat and it wouldn't be that comfortable to walk outside.

As for the car, you will not enjoy sitting for long periods of time after surgery. Flying is best as it is faster. And yes, the bumping is not comfortable either. I remember my husband wanting to go for a ride in the car around Rochester and environs after my surgery. I told him he was crazy! I got a town car to drive us the hour and a half to the Minneapolis airport. That was ok, and the 2.5 hour flight was also ok, but I was better off in my own house where I could get comfortable. Plus, you are afraid of people running into you all the time.

[DianeE]

Re: Symptoms worse for the last two years - septal myectomy?

I was told that the 900 mile drive from Cleveland to the Kansas City area was out of the question after surgery. The main reason is a concern about blood clots. If you do drive it will take much longer as you really need to get up a walk around every hour or two for the first week or so after surgery. I agree with Cynaburst about those bumps in the road. I could have sworn the shuttle driver who drove us to the airport purposely hit every pothole and speed bump on the way and it was not fun. All I could do was grit my teeth and hope we would get there soon. Also you really should be in the back seat when you are in the car ( air bags and mending sternums aren't a good mix). All in all flying is a lot easier particularly if you can get wheelchair assistance.

Good luck to you.

[shirleymahoney]

Re: Symptoms worse for the last two years - septal myectomy?

I had my myectomy in 2003, one question I would be asking is how stiff your heart is, because that was a question I didn't ask, but then again I don't think I would be here today if i didn't have it, being my heart rate was 150 sitting in a chair. The Dr.s ( specialist) are the best ones to talk to about surgery, my septum measured 2.7 and my gradient was 48/132, but everyone is indivisonual, in how they feel, hope you have gotten the answers you need
Shirley

[the search for moderation]

Re: Symptoms worse for the last two years - septal myectomy?

Shirley,

one question I would be asking is how stiff your heart is

Is this something that I could find on my results and if so...what would it tell me? Dr. Ommen or Dearani never mentioned "stiffness". I understand that left ventricle stiffness...has something to do with this but I guess my question is...how do i find out and how will it help?

Also...can someone tell me how much notice the Mayo usually needs to schedule myectomy? 2 weeks? month? 2 months? I know that noone can give me a definite answer but what has been your experience with wait time?

Thanks,