Loss of confidence

[bobhawaii]

Aloha, Had the replacement bovine aortic valve August 14 and yesterday found out it leaks by echocardiogram, have a stitch coming thru the skin that needs to be removed and that crazy burning scar sensation, and I'm still not over the post op pain. Do I need to get a new/better doc???? I don't really want these folks to touch anything!!!

 

[Kathy McCain]

Hi Bob,

I am sooo sorry you are having these problems! No, this should not be happening this soon! I can tell you what I would do. I would definitely get another cardio and surgeon through reliable referrals, in your area. I would need a second opinion.

Bob I had alot of post op complication. Effusion, pericarditis, and a pericardial window, one week after my AVR. My valve and heart are doing well though (so far). I had my surgery Feb 2008.

I know it's difficult, but don't dispair! Try to remain as calm as possible, considering the situation. Get your second opinion. Then go from there.

Please keep us updated.

 

[Cooker]

Aloha, Had the replacement bovine aortic valve August 14 and yesterday found out it leaks by echocardiogram, have a stitch coming thru the skin that needs to be removed and that crazy burning scar sensation, and I'm still not over the post op pain. Do I need to get a new/better doc???? I don't really want these folks to touch anything!!!

Welcome to the zoo Bob ... You are just a few weeks out so try and not get so discouraged ... I think a small amount of regurgitation is normal and many have issues with those pesky stitches ... I had three events after my AVR (mechanical) ... went into A-Fib and had to be shocked back to normal rhythm, became anemic and had to go back in over night for three units of blood and developed fluid around the heart which was treated with medicine ... all of this took place within the first four weeks home ... it gets better, I swear ... this thing takes time, it’s not like getting a splinter removed ... you have been through a major trauma and you can expect about a year before you have a full recovery ... not to say you will not improve daily or weekly but it is a slow process ... I would not go changing doctors for a few minor bumps in the road ... most of us have them ... this to shall pass ....

 

[Cooker]

I guess the question we should ask is it regurgitation or is it leaking around the ring of the valve?

 

[Lynlw]

Aloha, Had the replacement bovine aortic valve August 14 and yesterday found out it leaks by echocardiogram, have a stitch coming thru the skin that needs to be removed and that crazy burning scar sensation, and I'm still not over the post op pain. Do I need to get a new/better doc???? I don't really want these folks to touch anything!!!

Actually altho you probably don't want ot hear this, most of this sounds pretty normal, (except for the post op pain, unless it isn't that bad) How much is the valve leaking? Many (most?) people have some ( trace to mild)leaking in their valves, (even people with out heart conditions)
Stitches working their way up thru the skin and needing removed is also pretty common. Justin has had them with almost everyone of his surgeries.
What kind of pain are you having?
Is there any other reasons you don't like your doctors? I personally wouldn't be looking for new doctors yet, unless this has been something that you've been thinking about for a while and there are other reasons you don't trust them.

 

[Bina]

Bob, welcome to the group.
Most of us have some kind of issues and minor problems post op, give yourself a few more weeks for your heart to calm down and your body to recover.

 

[kfay]

Bob, I think that everything you describe sounds exactly like you just had valve replacement and are where you should be in your recovery. I knew that my new valve had a leak before I even left the hospital. It is not uncommon for there to be some degree of leakage. Those stitches can come through at any point. This may not be the last on you have. My Dr.'s nurse just got a sharp pair of scissors and cut it back to the skin. It disappeared completely a few days later. Your scar may take some time to settle down, but it will get there.

I know it is hard not to get discouraged, but it just takes time. Your body has been through major trauma and it is going to take longer than 6 weeks for it to get back to normal.

Kim

 

[hensylee]

maybe give it some more time. too early not to have soreness still; I had stitches that got infected as others have - your dr can take care of removal of the 'offender, scar will get better. I was told it takes a year to get completely over all this. don't hurry it too fast, after all you had MAJOR surgery and that's way harder on the body than the easier sort. if you ever have questions, you know you can call your dr; that's what they want you to do. In meantime there is VR (us) and there is a wealth of information for you right here. Please stay with us awhile so that members can inform and support. Blessins.....

 

[Nancy]

New valves can leak a little before scar tissue forms and closes everything up. Just how much do they say it is leaking? What does the echo language say?

People do have stitches poke through the skin from time to time too. They are usually just cut off, and everything returns to normal.

Judging from my husband's many operations, pain can continue for a while. It takes a good 6-8 weeks for the initial healing, and then a year or two for the final stages of healing. Of course you will feel better and better all the time, but this is tough surgery.

 

[Kathy McCain]

I agree with Cooker. Is it leaking around the ring, or is it regurgitation around the valve? I guess I should have asked that first, before I responded. As far as the other problems, that seems very normal to me. It took me 15 mos, before I felt really normal. There are certainly different reasons for leakage. Just what specifically did the Dr. say? Give yourself more recovery time, then if you still have a strong gut feeling that something isn't just right, get a second opinion. It couldn't hurt. That's what I would do.

 

[bobhawaii]

Confidence

Confidence

Aloha,
Thanks for the responses, it made me feel somewhat better about what's happening. Don't know yet what type and volume of leak involved, just that it does. The echo tech grabbed the surgeon as he was walking by, I got an email into the cardiologist for ALL the info. Had chemo for agent orange leukemia all last year so I am wore out with docs, hospitals, meds, recovery, etc. and this year I was hopping for something else. I did little research on this, it was just "get it done". so I guess I brought this "lack" on myself by not doing the homework. Studied the protocol for leukemia down to the milliliter of what chemo was used and knew what to expect. I did not look for a forum like this for this surgery until last night and just reading all the posts has eased my apprehension. Thanks to you all.

 

[Lynlw]

Aloha,
Thanks for the responses, it made me feel somewhat better about what's happening. Don't know yet what type and volume of leak involved, just that it does. The echo tech grabbed the surgeon as he was walking by, I got an email into the cardiologist for ALL the info. Had chemo for agent orange leukemia all last year so I am wore out with docs, hospitals, meds, recovery, etc. and this year I was hopping for something else. I did little research on this, it was just "get it done". so I guess I brought this "lack" on myself by not doing the homework. Studied the protocol for leukemia down to the milliliter of what chemo was used and knew what to expect. I did not look for a forum like this for this surgery until last night and just reading all the posts has eased my apprehension. Thanks to you all.

Boy you've had quite the year. I'm glad you were able to find us now and get a little relief, especially since it is Friday I know how tough it is to find scarey things medically and have to wait over the weekend to talk to the docs.
Did they happen to say if the leak was mild, moderate ect?

 

[Bryan B]

Bob, I think that everything you describe sounds exactly like you just had valve replacement and are where you should be in your recovery. I knew that my new valve had a leak before I even left the hospital. It is not uncommon for there to be some degree of leakage. Those stitches can come through at any point. This may not be the last on you have. My Dr.'s nurse just got a sharp pair of scissors and cut it back to the skin. It disappeared completely a few days later. Your scar may take some time to settle down, but it will get there.

I know it is hard not to get discouraged, but it just takes time. Your body has been through major trauma and it is going to take longer than 6 weeks for it to get back to normal.

Kim

Aloha Bob,

I agree that everything sounds fairly common for being 2 months post-op. Definitely find out why, where, and how much your new valve is leaking. Like others have said trace to mild leakage is common after surgery.

The post-op pain can be common after 2 months depending on how severe it is and how active you have been. You're body will still let you know you've had open heart surgery 2 months later when you overdo it with physical activity.

I can't help you with the burning scar sensation as I didn't have that complication. My major complication was the sternum wires causing me a lot of pain so I had them removed 7+ months after the surgery.

I highlighted what kfay said about the stitches because I had this happen too. I actually called my surgeon and he told me I could come in to have it taken care of or I could do it myself. He then told me how to do it which is exactly what kfay's nurse did. It's kind of like that old razor commercial where they say the first blade "lifts it up" and the second blade "cuts it off" for a smoother shave. I took a some small scissors, wiped them with alcohol (then took a swig...j/k), pulled the stitch up about an 1/8" and sniped it right at the skin, which made it actually retreat back under the skin. DO NOT try this at home without your doctor or surgeon's approval.

I know it's hard to be patient but recovery takes time. It's easier to recognize how much you've recovered by looking in the rear view mirror than looking at how you feel today.

 

[Mentu]

Hypersensitivity

Hypersensitivity

Bob, it sounds like you are experiencing centralized hypersensitivty around your incision. So am I. The sensation in my chest is essentially a circle about 9" wide centered on my incision. Periodically, a cotton tee shirt begins to feel like shark skin and touching the skin feels like touching a bad sunburn. I experienced this once before when I had surgery on my hand and it can be dealt with very easily. It will probably take a week or two before you begin to experience relief but once it begins to improve it goes more quickly. My therapist had me take a couple of clothes of different texture and rub them lightly over the sensitive area three or four times a day for about 10 minutes each time. There is no benefit to rubbing hard. For the past 10 days, I have been using a running sock or a japanese bath cloth (a slightly abrasive nylon netting). The hypersensitivity has decreased but it will probably take a couple more weeks for it to fade.

Hypersensitivity results from nerve endings being cut during surgery. As healing starts, something in the brain sort of misfires and begins interpreting any signal from the area around those nerves as pain. The area of the hypersensitivity is almost always larger than just the area of the incision itself. Over a period of a few weeks, the desensitizing routine sort of retrains the brain to stop sensing everything as pain.

 

[bobhawaii]

Loss of confidence

Aloha,
So, after ten days the cardiologist just called to tell me about the echo. I have a "mild" leak where it was sewn in! No info on the leak volume, etc. Only 9 weeks from surgery, still have some chest/muscle pain, burning scar eased some, still have the stitch right below the skin. Funny while I write this the surgeon calls, initially after the echo said it was leaking at the center of the valve, now says it's where it was sewed, should stay mild (that's what he hopes) and echo every 6 months to monitor, and we'll see you in December. Any suggestions?
Bobhawaii

 

[dl_mooney]

I have a OnX Mitral Valve.Had first Ecko & it shows no leaking.(thank goodness).Would say give yourself a chance to heal .Have it followed up.If you dont have faith in your Drs.Find some that you do. Best wishes in what ever you do.

 

[Bryan B]

Aloha,
So, after ten days the cardiologist just called to tell me about the echo. I have a "mild" leak where it was sewn in! No info on the leak volume, etc. Only 9 weeks from surgery, still have some chest/muscle pain, burning scar eased some, still have the stitch right below the skin. Funny while I write this the surgeon calls, initially after the echo said it was leaking at the center of the valve, now says it's where it was sewed, should stay mild (that's what he hopes) and echo every 6 months to monitor, and we'll see you in December. Any suggestions?
Bobhawaii

I'd schedule your December appointment and go to the beach.