Medtronic

[Harmony]

I am angry because no one told me about this implant. I was also in the hospital 2 weeks not because the operation did not go well. They would not let me out sooner even though nothing was wrong. They said I was condused. Of course I was confused they never gave me food never took me out of bed. My husband was very upset. He thought I would die. Now they send me this thing from Medtronic. I picked Dr Galloway to do my surgery because he has a great reputation and said he could do a minimal invasive surgery. I have 2 small scars one on top of my breast and one under it. Before surgery I was never really sick. However I think things were changing. My PH was high and I had irregular heart beats. I am really angry that all my doctors never mentioned I would have an implant and who knows what else. Everyone only told me how well I looked. Why did they not tell me the truth. I am trying to find the article written by Dr's Galloway and Colvin on how they worked days on the furture band rig.

 

[sue943]

Perhaps it is the word 'device' which is upsetting you so much.

This FDA site gives you the definition of the what is a medical 'device', even a bedpan is a medical device.

http://www.fda.gov/cdrh/devadvice/312.html

From looking on the internet it would appear that the use of a band is so commonplace that the surgeon might not have thought to tell you. Rather like having your auto repaired, the mechanic wouldn't necessarily tell you me might need to fit a minor part as it is just standard procedure and the repair couldn't be done without the part.

Exactly how did you expect them to repair your valve? Did you ask him exactly what he would be doing, how he would repair it?

You mentioned that you had suffered some confusion so spent longer in hospital than you expected, perhaps he DID tell you what he had done but you didn't understand or remember.

 

[kfay]

Harmony, I'm sorry you are so upset about this. It is common for patients to not hear or understand everything that Dr's are telling us during consultations with them. That's why it is recommended to take someone with you to these meetings or even take a tape recorder so you can listen to the conversation again later when you may not be experiencing so much anxiety.

On the Cleveland Clinics web site, it states that ALL mitral repairs done there are done so with a ring http://my.clevelandclinic.org/heart/disorders/valve/mvrepair.aspx).

I really don't think you have anything to worry about with this "device" being inside of you. Think of it as saving your life, because, if nothing else, it has certainly helped prolong it. Be thankful that your surgery was a success and, from the sound of it, relatively uneventful.

Kim

 

[Harmony]

I finally spoke to my Cardio today. He does not understand why I am so upset. Maybe it is because they did something they never told me about. As for having someone with me, my husband was with me when I spoke to the Surgeon. He never heard anything either about a band around the valve. Before surgery I spoke to my Cardio almost every day. Why no one told me I will never know. It is almost 2 months since surgery. I saw my Cardio twice and my Surgeon once. They all think I am healing well. I had a problem with internal bleeding and a loss of blood. The bleeding seems to have stoppedand I think I had pain from oulling the ribs apart to do the surgery. But that seems to have stopped. I also had a hole in my heart repaired that was supposed to stop my migraines. For 2 weeks I had no headaches or migraines but they came back. I think worse than ever. I am going to have to find another neuro as I am also getting occular migraines I read here some where that people often get occular migraines after valve surgery

 

[sue943]

How did you expect the valve to be repaired, what did you think they would do to effect the repair? Had you asked what they would do in order to repair the valve?

 

[ChouDoufu]

I never received a letter from Medtronic about the ring. Interesting thayt you did.

i read (oops, misplaced the link) that the fda decided in 2004 that it was
no longer necessary to send cards to those with rings.

 

[Mary]

I finally spoke to my Cardio today. He does not understand why I am so upset. Maybe it is because they did something they never told me about. As for having someone with me, my husband was with me when I spoke to the Surgeon. He never heard anything either about a band around the valve. Before surgery I spoke to my Cardio almost every day. Why no one told me I will never know. It is almost 2 months since surgery. I saw my Cardio twice and my Surgeon once. They all think I am healing well. I had a problem with internal bleeding and a loss of blood. The bleeding seems to have stoppedand I think I had pain from oulling the ribs apart to do the surgery. But that seems to have stopped. I also had a hole in my heart repaired that was supposed to stop my migraines. For 2 weeks I had no headaches or migraines but they came back. I think worse than ever. I am going to have to find another neuro as I am also getting occular migraines I read here some where that people often get occular migraines after valve surgery

Maybe you should ask the surgeon if he can reoperate and remove the ring? I really can't think of another option since you can't go back in time to get pre-op clarification.

Other than that, it sounds as though you're healing well, so congratulations and welcome back!

 

[Jkm7]

I never had migraines prior to my valve surgery. I now have occular migraines without headache. All my doctors after very careful opthmologist examination have deemed them harmless.

Of course, you have a ring with your repair. Surgeons do not delineate to patients every step they take during surgery that are considered routine unless you specifically ask about something. It is not at all surprising IMO your surgeon never mentioned it. It's one of the common/expected steps in completing the repair.

Why waste energy on more anger when you can use it for healing?
Hope you heal well and quickly.

 

[ChouDoufu]

I finally spoke to my Cardio today. He does not understand why I am so upset. Maybe it is because they did something they never told me about.

is the band causing a problem? was the repair not done correctly?

 

[Bina]

Many, many surgeries involve "extras" that the surgeon is only able to determine once he has a patient open on the table.
After my angio where my dialated root was noted, my surgeon simply said that he would "take care" of it if necessary once I was open.
Harmony, it really isn't worth the energy to dwell on this.
Repeat after me: I love my ring. I love my ring. I love my ring. Best wishes.

 

[ALCapshaw2]

Harmony,

Like you Cardiologist and others, I get the impression that you are making "much ado about nothing" that is simply standard practice in Valve Repair Surgery. Most patients are GLAD to BE ALIVE and THRILLED that they now have a very good chance of living a long and productive life versus a good chance of facing their demise if they had done NOTHING.

I also get the impression that his may just be 'displaced anger' from being a Heart Patient. Depression is NOT an uncommon side effect of Heart Surgery. You may want to talk with your Primary Care Physician about seeking Psychological guidance in dealing with your intense feelings.

'AL Capshaw'

 

[Harmony]

Well Al it is not displaced anger from being a heart patient. I knew years ago that someday my mitral valve would need to be be repaired or replaced.I do not know if a Psychologist could tell me why everyone had been told by their Surgeon or cardio about this common practice. I have a right to be upset. I spent 18 days in the hospital with this surgery. It was not the valve I had internal bleedingfor days. Think a Psychologistcan help me get back the blood I lost.




?Bina do you thing they could put a few rubies on the ring?

 

[escargome]

Harmony,
I've been reading your posts. Sorry about the anger and frustration you are feeling. Maybe if you still have them, look over your consent forms and see if the doctor or hospital noted that they would be using a ring. Sometimes with all the stress that is involved our minds slide over things that at the time seemed trivial. And if I might ask, what caused your internal bleeding? Was it the valve repair?

I wish you the very best and hope that you can find some peace and enjoy the new lease on life that you have been given. God Bless You

 

[ALCapshaw2]

OK, let's say that you DO have a right to be angry.

SO, what do you want to do about that anger and how long are you going to let it Eat Away at you, your recovery, your health, and your life?

What would it take for you to get over your anger?

Have you discussed your surgery with your SURGEON?

HE would seem to be the logical person to talk to about why you lost so much blood (and IF the Ring was the Cause of your bleeding, or something else).

Sometimes "Stuff Happens" and we just have to accept it and live with it.

Not All of us received the Valves we believed we were going to receive. That's why we encourage everyone to have a Plan B 'just in case' our first choice does not work out.

In the end, it is YOUR CHOICE whether you want to go through life as a ANGRY and BITTER person who had a difficult Heart Surgery or whether you CHOOSE to embrace the New Lease on Life you have received.

I hope that you can find Peace and Happiness in the rest of your life.

 

[sue943]

http://www.or-live.com/nyu/1283/ This is about the Future band.

http://my.clevelandclinic.org/heart/disorders/valve/mvrepair.aspx If you read down this article from Cleveland you will see...

Mitral valve repair surgery - Surgical techniques

Cleveland Clinic surgeons have been instrumental in the development and application of modern mitral valve repair techniques. Problems with the posterior leaflet are generally corrected by a small resection of the abnormal portion of the valve. Anterior leaflet dysfunction is managed by creation of new chords or chordal transfer. Anterior leaflet repair techniques are technically challenging, requiring a skilled and experienced surgical team to achieve the best result. All repairs include an annuloplasty, which is a complete or partial ring placed around the circumference (rim) of the valve.

 

[Jkm7]

For anyone who feels the need to know as much as possible about their pending surgery, research is the key. Obviously, there is piles of info available. One need only look for it. We cannot expect our doctors to tell us every detail of everything they will do and we will experience. They certainly must answer our questions but some of the info gathering must be our own responsibility IMO

If a person knows they have to know every aspect of what will happen, they should spend the valuable time between diagnosis, decision to operate and date of surgery gathering this info. IMO, we must expect to do some on our own if we are of the persuasion that wants to know as much as possible.

There are some folks who want to be told as little as possible. The surgeons/docs walk a line between giving too much and not giving enough info. They gauge their patients (and their time restraints) and they evaluate their opinion of how much a given patient can handle in terms of educating. Emotional and physical conditions all need to be considered IMO

I stopped my anesthesiologist on my pre-op meeting with him. This was my second OHS and he thought I would be very interested in hearing about all the lines he would place, why they would be used, what various medications would be given for...... I didn't want this much info and told him so. He was fantastic. I adored him and he was appropriately responsive. (And took very good care of me. )

Apparently you wanted to know all the nitty gritty. Did you say so?

 

[Bina]

My surgeon gave me answers to all my questions, but he did not get into lengthy explanations of everything....not because I wouldn't understand, but probably because I was a complete nervous wreck.
Harmony, go out and buy yourself a beautiful ruby embellished ring....and remember to smile every time you admire it on your finger.

 

[pamela]

<snip>I spent 18 days in the hospital with this surgery. It was not the valve I had internal bleedingfor days. Think a Psychologist can help me get back the blood I lost.

Your body will replace your blood as long as you consume the right nutrients to help it do so. A short article on the life cycle of red blood cells can be found here. There is no need to be angry at people who are trying to explain one of the many paths to resolving your dismay that you can choose to take.

<snip>We cannot expect our doctors to tell us every detail of everything they will do and we will experience. They certainly must answer our questions but some of the info gathering must be our own responsibility IMO.

Informed consent means just that and once granted, the patient needs to trust that the surgeon will do all that is neccessary to solve the problems they may encounter in performing the procedure and all that they can in the best interest of their patient.

While it's not required to feel gratitude to your medical team for performing the surgery and care on your heart; most of us don't understand when someone doesn't. You really shouldn't suffer through what you see as betrayal much longer, talk to your doctors and ask them to explain what happened to you.

Take Heart, Harmony, you'll find your way through this maze of getting well,
Pamela.

 

[Pegasus]

Harmony,
I am so happy to hear that you received a repair and you got to keep your NATIVE valve. As many others said, all repairs are done with annuloplasty ring. Withouth the ring my husband's repair wouldn't have been possible. Would it help to see the ring on the echo or x-ray?
My husband also had blood loss post op because he had a heparin bleed which set him into A-Fib. He got several transfusions, it was two rocky weeks post op but then everything went smoothly. He ate healthy and his normal blood count was back in no time.
You have every right to be angry about having had OHS. It sucks and almost noone should have to go through this. But you are blessed that it was a fixable problem and you got a 2nd chance and that ring is your life ring now. Look at it that way, because of that ring your repair has an excellent chance to be lasting, because of that ring you got to keep your native valve which means you have a lower risk of endorcarditis, you do not have to monitor your INR when you start a new medication, you do not have to bridge with Lovenox for future surgeries and you do not have to worry about coumadin mismanagement all of which makes life a little easier.
I do urge you to speak to a counselor to help you sort through your feelings. Continued anger just hinders your recovery and is bad for your health which you surely know. I am wishing you peace and acceptance. Take care of yourself.

 

[abbanabba]

Harmony - I am so very glad that you finally went through with your surgery and are on the mend. It does sadden me, however, that you continue to be looking for reasons to be angry and upset.

From you initial post, it seems you may have confused the ring they used on you for a different device, which is why your were upset - and if it had been the device that had potentially caused deaths, of course you had every right to be upset - but from what the other posters have found out, it seems the ring they put in is not the device you were worried about. It seems the ring is pretty normal and nothing to be alarmed about.

I hope for your own sake you can accept your surgeon's did whatever they needed to in order to prolong your life (and hopefully improve the quality) so now you really need to focus your energy on healing and getting well - not stressing about something which seems to be fairly commonplace and ultimately beneficial to you.

I'm sorry if it seems like you are being lectured, but we have your best interests at heart (literally!) and would all like to see you moving forward with this new lease on life. By worrying yourself over things like this, you are the one missing out and that seems like an awful shame. Life is too short to stay angry.

Wishing you the best Harmony.


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