Myectomy question- How long do you feel better?

[Eileen2345]

Hi everyone,

I have a question. How long do people feel better after having a myectomy?

Do they feel better for months, years? And if it is years, how many years?

I am curious because I have heard of some people feeling better for a while and then the symptoms come back. Has anyone out there had a myectomy 5 or 10 years ago and still feel as good as they did when they had it done recently?

I am starting to consider seeing a specialist in Cleveland. At this point, I do not know if I can travel that far, but I am seriously thinking about it.

I can pretty much guess that the doctors in Cleveland would want me to have a myectomy done. And, I think that I am a pretty good canditate with an EF of 84%.. a septal measurement of 27mm.. and an atrial enlargement of 45mm.
Not to mention how difficult it is for me to to eat salt.

Thank you for any information, I appreciate it.

Eileen

*** I editied the subject line to maybe receive some more responses.***

[Burton Borrok]

HI Eileen,
Not having had a myectomy, I can only pass on hearsay information from those who have reported on it – and I hope and expect they will respond to you also – although I expect the ones who have experienced lasting results will be underrepresented as they are busy leading their improved lives, and may not be checking the board anymore.

From what I hear however, myectomies have a successful rate based on the candidate more then anything else. Good candidates tend to have results ranging from much improved to remarkable, while less responsive candidates tend to have only some improvement. Personally, if it were suggested by a specialist I trust that I have a myectomy, I would jump at the chance (all other things being equal.) Relief from this disease would be quite welcome, even if it didn’t last forever.

The reason I responded to your post was to talk about traveling to Cleveland. From Phoenix you are obviously talking about flying – and handled right, nothing could be easier. Number one, you take a shuttle from your home to the airport, and they drop you right at the curb. You immediately ask for a wheelchair – and get one. From here on an attendant pushes you through any ticketing (if you don’t have yours already. You should – easy over the internet or phone), and inspection, right through to the gate. When the plane is ready for boarding, you will be pre-boarded by the airline staff, wheeling you down the ramp and only making you walk from the door of the plane to your seat.

When getting the ticket(s) make sure you ask for wheelchair assistance at both ends of your flight, plus any transfers of planes if necessary. When you arrive at your destination do not deplane until they have a wheelchair ready for you. You will just have to walk to the door of the plane to get in it. An attendant will wheel you to your baggage claim, get a red-cap to handle your luggage, and wheel you to a cab or car rental booth. If you are renting a car – I’ve never done it, but I expect they would wheel you to the actual car you rented. If you are traveling with a significant other, it is even easier because they will handle the luggage and load the car, picking you up at the curb.

The return trip is just as easy, only in reverse. The attendants do not pull you backwards though – only the process is reversed. For those who need it, for an additional charge (last I heard it was about $75) you can have O2 on the plane – enough for the whole trip. I was also advised that if you have a scooter or your own wheelchair, the stewards will store it on board for you – not checked into the hold – so you have access to and from the plane itself.

One last consideration, for those who would need assistance in addition to what the airport and airlines supply – at the hotel or in the medical facility for example. That is, you can rent a wheelchair from a local drug store or medical supply house by the month. (In some locations scooters are also available.)You then have it available for your whole trip. Why not travel in luxury? (You can’t travel in the ‘lap of luxury’ because the airlines do not allow more then one in a seat.) Hope that is of some help.
Burt

[Eileen2345]

Thank you Burt for your reply and all the helpful information.

I was very concerned about traveling. Now I know that it can be done, that is very good to know. Thank you again so much.


I do not mean to sound unkind to anyone here, but I am somewhat discouraged by the lack of responses.

All the best

Eileen

[Reenie]

I'm sorry, Eileen, but I don't know the answer. I don't think that traveling will be a big worry, though. There are lots of people who travel to get their myectomy done. My husband hasn't had any surgery besides the ICD implant so I've got no information that I can add except from what I've learned from others here. Good luck.

Reenie

[vondhe]

Eileen,

I don't have a definite answer about how long the results of myectomy last, but I can tell you the experience of my Dad and my aunt (his sister). For my Dad, there was a BIG reduction in his symptoms and improvement in his quality of life, which lasted probably 10 years or so, before he was back to about where he had been prior to the myectomy. My aunt had her procedure a few years ago, and had been pretty symptom free before a sudden "attack" or display of symptoms led to diagnosis and surgery almost immediately, so for her it's harder to tell since she'd been pretty healthy up until the surgery. As far as I know, she's been great since. From what I read of others' experience, it really varies from person to person. I am in the position of wishing I were a candidate for it myself, since I would love SOMETHING to buy some quality of life back for myself, but as I have no obstruction, this isn't an option for me.

Best wishes with it.

Heather

[mtlieb]

Eileen,

Don't be discouraged. There are many folks here, including myself, who have had wonderful outcomes from our myectomies. I was under the impression that you only wanted to hear from those who have had myectomies 5 to 10 years ago or more, and perhaps others on the board thought that as well. Otherwise i would have posted long before this.

When i first joined the HCMA two years ago, there were quite a few members who had recently had myectomies with tremendous success, and many of them haven't posted much, if at all since then. As Burton suggested, those folks simply have no reason to hang around here anymore and are out enjoying their lives! 8-)

I had my myectomy in Cleveland seven months ago now, and the results have been nothing short of a miracle. I continue to feel better every day, my energy level keeps going up and up, and i honestly haven't felt this good in many many years. I'm 42 years old by the way, so we are in the same ballpark here.

I found an article at the American Heart Association that you might be interested in reading, concerning the long-term prognosis for myectomy patients. I'm sure there have been other studies done as well, and perhaps Lisa can recommend some additional reading for you.

http://circ.ahajournals.org/cgi/content/full/92/9/122

Should you decide to proceed with a myectomy, i cannot recommend Cleveland Clinic highly enough.

Take care,

Jim

[Linda]

Eileen, Please call Lisa and talk to her. You know how often we say, "Everyone is different", and your description of your condition is quite different. You have concentric thickening and you've also had an alcohol ablation, if I read correctly. Lisa is the one who can most likely offer info on someone with a similar story.

You might also gain a good bit of info by doing a search thru previous posts on myectomies. You might be able to reach someone thru a PM who doesn't regularly read the message board anymore. I'm sorry I can't offer better answers.

I know considering this procedure and traveling for it would be a big step for you. You've got a lot of home responsibilies with those little ones. Traveling is quite managable, but you would certainly want to have your helpers lined up, all the details taken care of that drive a mother crazy. Definitely plan to stay longer than you think you will need to, that way, you don't need to scramble to make arrangements if there are a few delays in your recovery, or even the weather.

Best wishes, Linda

[Eileen2345]

Hi everyone :D

Thank you for the responses.

Yes, Jim, I was wondering if anyone had a myectomy years ago and still felt well. I am so glad to hear you are doing so well, I am very happy for you. :D

Hi Linda, sorry for not being very clear, I did not have an alcohol ablation done, I had a radio frequency ablation done.
And yes, traveling would be a challenge for me, I'm tired after going to the grocery store, let alone flying from Phoenix to Cleveland and staying in a hotel, etc.

Hi Heather -- 10 years!! That is very encouraging. Wow. That is the first time I have heard 10 years after a myectomy. Thank you for the information.

I have done some back reading on this section of the site and I have not read anything about someone feeling better for a number of years, maybe I did not read back far enough.

Thank you again everyone for your input and information.

Hugs,
Eileen

[Debbie]

Eileen,

I, too, had (have) the same question. Myectomy has come up in conversations with my doctor.

I feel that for me, myectomy would be a surer bet than alcohol ablation. I am scared of alcohol ablation. It just seems that there is a lot of room for mistakes with the ablation, and myectomy has been around much longer.

When I was in University Hospital in Denver 2 years ago, they wanted to do an ablation on me the next day. The only catch? I would be the first for that particular doctor. While I'm sure he was well skilled, I was not sure I would want to be his first! I finally declined, after really debating it.

Then you read about the people who have had two myectomies, and that scares me! Good Lord, I think, having to recover from not only one, but two?

For you out there who have gone through it... you have my deepest admiration. And then to do it again... :shock:

Anyway... sorry, don't mean to change the subject. I'm not, really, I would just like to see some research on each procedure... one versus the other.

Debbie

[Pam Alexson]

In regards to your query , I think you are asking a question that has many parameters. We are all different those of us who have had myectomies , just as those who don't vary. The successes of myectomy can be meassured in greatly diverse degrees and specific to the uniqueness of our varied HCM hearts. As we all experience a relief to a degree , I do believe that not many would have declined to have the surgery. However you need to keep in mind that myectomy is not a cure. There are different problems with each individuals heart , so a blanket success or not is not the answer to your question. It is important to learn all you can with your specialists help about your unique HCM heart.

For me personally, there was a quality of life that no longer existed prior to surgery and a lack of a quality of life with a different spin that still goes on for me after the surgery.

I think it is important to realize that the degree of stiffness of the ventricle plays a major role in the resumption to an acceptable quality of life for some individuals and the degees of stiffness vary. There is however great benefits to simply removing the obstruction and correcting the mitral valve if need be. This can not be underscored enough. There are overall many improvements that are garnered from having it done. I am very happy I was able to have a myectomy.

In concluding , it is of utmost importance to know your heart and its specific and unique abilities and limitations as they are before a procedure and what will exist after. Being real is an absolute must to keep focused on the importance of striving to try and help the HCM heart . A myectomy does not cure hypertrophic cardiomyopathy.

Best wishes to all .

Pam

[Tigger1]

Eileen,
Sorry I can't answer your question more clearly, but my myectomy was done 8 months ago. Like Jim, the difference between how I feel now as compared to 8 months ago is amazing. The Cleveland Clinic performed a miracle on me. I only wish everybody could have the same results.

When I left the hospital, we drove 5 hours home. I was a little worried to say the least but it really wasn't that bad. The man in the room next to me was 65 years old and was flying home to Calif. by himself. He had the procedure done as me. Burton gave you all the poop on flying so please don't let that hinder your decision.

Like everybody else I hope my myectomy has a life time guarantee...


Tigger 1
Real courage is being scared to death but saddling-up anyway...

[angall]

Hi Eileen

I had my first myectomy in 1973 at the National Institutes of Health in Bethesda, Maryland. I was 20 years old. At that time it was an unique disease. I felt wonderful! I could walk further, had more energy for many years. I started getting shortness of breath, etc. about 1994. There was an incident that I believe sparked this change and getting older didn't help. That was a period of 21 years!

In 2000 I moved to Minnesota and had to find a doctor that specialized in HCM. I was referred to the Mayo Clinic in Rochester, MN. They did a series of tests from head to toe. They discovered that the obstruction had grown again and required another myectomy.

I had the myectomy and an ICD inplanted in October of 2000. Six months later, I found an office job. I still work a full time job, but when I am not feeling well, I don't come to work. I do get congestive heart failure that sometimes requires me to be hospitalized.

All in all, I am thankful for the many years I have lived a comfortable life.
I rest when my body tells me its had enough. I do my housework, but not as well as I use to. My heart is getting stiff, and some day I know I will need a transplant.

Would I do it all over again? Absolutely. I believe having a myectomy abled me to have two wonderful children.

The final decision is yours. I can only speak from my experiences. Our body is different even though we have the same heart disease. Take everything into consideration. Read, ask questions and don't be afraid to seek another opinion if you're not satisfied with one diagnosis or suggestion.

Take care and please keep in touch

[Reenie]

I'm speculating, but I would think that maybe Esther needed a second myectomy because her heart hadn't finished thickening at age 20. HCM is a progressive disease and it takes time for the heart to "finish" the thickening process. Just my take on things.

Reenie

[Eileen2345]

Thank you everyone for your responses.

Esther wow, your story is very encouraging. Thank you for sharing it.
And I am very happy for your success.

I must admit I am a terrible skeptic. I read many articles written by doctors about myecomies but I also wanted to know what the people who have had them had experienced. I really appreciate everyone's time and information.

If I can remember correctly what Lisa told me (God bless her, she talked to me for quite a while on the telephone), I am not a candidate for an alcohol ablation because my condition is concentric.

It is a lot to think about, but I need to do something soon. I am so tired, and I am so slow, I walk like an 80 year old woman.

Thanks again.

Eileen

[shirleymahoney]

Eileen

Don't feel bad but i do feel for you, i have been that way for a while i don't know how much of this is from Arthrits or my heart i walk at times all bent over like an 80 year old, i will be thinking of you you really need to get something done, i'm now playing the waiting game

Shirley

[Eileen2345]

Hi Shirley,

Yes, I understand. I tell people that I am slow, but I eventually get there.

[Jerry Salzman]

Eileen,

I am one of those who have gone on with their lives and do not visit very often :wink:

My myectomy at Cleveland was 2 1/2 years ago. I can't say that I am great, but I am a 1,000 % better than before surgery. My biggest problem right now is my life long nemisis weight! Extra weight is probably why I don't feel even better.

I barely could work prior to surgery and I was always worried I would have another syncope (fainting) episode. That has all gone away. I do still feel tired alot.

Listen to the doctors at the Cleveland Clinic, if they say go for it, then I would!

Jerry

[behrang]

I just read your posting. I have only one sentence about my feelings. If I knew how better I would be, I would not hesitate for surgery.

with my nest wishes,

Behrang