I've Transitioned From The Waiiting Room To Pre-Surgery - Some Thoughts

[skeptic49]

There is the tendency to spend too much time looking up medical terms, watching medical videos, etc. When I was in the hospital I watched videos of each procedure I was to have prior to getting it. My husband Dan thought I was crazy and that I was making myself into a basket case. But I feel that it helps to be in the know. For example, I think it helped me to warn physicians that I would have a problem tolerating a closed MRI and that my swallowing difficulty meant that I would likewise have problems with the TEE. Bottom line is that they knocked me out for both and I did fine. OTOH, watching a video of the new through-the-wrist cath technique lessened my apprehension about that procedure as soon as I found out that they would do it that way for me.

I don't spend all of my time doing research. I am back to taking my two one-hour walks each day, and I spend time with my model trains and doing holiday things too. But I also have to be an informed patient and come prepared when I meet with my surgeon candidates. Therefore I do some amount of research every day. The other day I watched a video of what I believe will be very similar to my surgery: minimally invasive isolated aortic valve replacement. Here is the link to page with the video:

http://my.clevelandclinic.org/services/heart/patient-education/videos/valve-surgery-faq-videos

Now, a lot of things have to fall into place in order for me to get this minimally-invasive AVR option, but it's what I am hoping for. This is because minimally invasive surgery is less stressful and recovery times are shorter. On Tuesday I get a CT chest scan to assess the size of my ascending aorta. If the aneurysm is too large and needs surgical attention, then I suspect that a minimally invasive approach will be ruled out for me. However, last time it was measured it was dilated but stable. 4.5 cm is the cutoff...mine was at 4.2 cm. So we'll have to see.

The other issue is the surgeon...does he do mini-sternotomies....if so has he done a lot of them? This brings me to the whole issue of preferred surgeon and hospital. If I had my wish I would have my procedure at the Cleveland Clinic. That is the platinum standard in the US for heart surgery. Sure, I will probably get excellent care and an excellent outcome in Philadelphia, but Cleveland sets the standard for the nation. It is their website that I go to for information, videos and explanations. I have been following their renowned surgeons for years. I even have a favorite surgeon there. Dr. Roselli. I would go with him in a heartbeat (mine! But I live in Philadelphia so I'll try to be satisfied with someone here. Hopefully I'll find someone...either the surgeon my cardiologist recommended, or someone else. Luckily, I have time, although the clock is ticking and I definitely don't want another heart attack or stroke.

I just spent a week in the hospital. The curious thing is that nothing was done to correct my problems. Just a lot of testing but at the end of it all, I was discharged with no therapy having been done. They figured I had coronary artery blockages. I was pretty sure I didn't. I was right. You could almost feel the disappointment of the lead doctor responsible for my care when he told me I was being discharged. There was nothing he could do for me. I needed AVR, not CABG or a stent. So that's where we are!

I am really enjoying being home and playing with my "son" Loki, my cat.. As a dog person, I never thought I would be so close to a cat. He's on my desk all day, we take naps together, we sleep together...we're hardly ever separated when I'm in the house. Dan has been just wonderful and our friends have been very supportive. Life is good. We'll make it all happen.

 

[Paleowoman]

The other day I watched a video of what I believe will be very similar to my surgery: minimally invasive isolated aortic valve replacement. Here is the link to page with the video:

http://my.clevelandclinic.org/servic...ery-faq-videos

I had "minimally invasive" aortic valve replacement. Here's a link to a thread with piccie of it: http://www.valvereplacement.org/foru...-incision-scar My incision scar is nearly the full length of my sternum, it's 4.5 inches long and my sternum is 6 inches. Usually minimally invasive AVR is about 2 inches long. Heaven knows why mine is longer than usual, my cardiologist is trying to find out from the surgeon, but there's nothing in the operation notes to suggest they had a problem. However, sometimes a surgeon will have have to do a longer incision than planned for one reason or another during the op.

Have a good Christmas !

 

[OldManEmu]

Skeptic
I was in the waiting room from day one after my first AVR surgery in 2004 as due to heart failure and poor condition associated with it my 4.7cm Ascending Aortic aneurysm couldn't be fixed at the time due to the risk of death. My heart remodelled after the first surgery and it took another 6+ years before the AA aneurysm crossed the 5cm mark triggering the AVR redo and the AA aneurysm repair. If 4.5cm is now the trigged point for an AA aneurysm repair why it wouldn’t be done at 4.2cm with the AVR to avoid a repeat surgery in what could be the near future??

 

[epstns]

Hey, Skeptic!

It seems that you have your thoughts in order pretty well. You've had almost as long to think it through as I did (I waited almost 10 years), and as long as you can be comfortable with your surgeon, the rest usually falls into place.

I read all about Cleveland Clinic, and even discussed it with my trusted cardio. He felt that my situation was not complicated enough to warrant the extra stress of travel for surgery, and that we had (in Chicago) a couple of great hospitals to choose from. He did not recommend the hospital at which he practices. He recommended the hospital where he studied, and also Northwestern. I chose Northwestern, and will be forever pleased with my choice. I had some complications post-op, and they were right there to take care of it all. It may have ben a bit scary, but I knew I was in very good hands. I'm not suggesting that you come to Chicago (although you'd be happy with Northwestern), but I do recommend that you do your research and choose the surgeon and hospital that you feel most comfortable with.

Above all, keep up the good attitude. That makes a world of difference going in and coming out.

73, and let me know if you want to set up a sked on HF. I operate primarily CW on 40, 20, 15 and 10 meters.

 

[skeptic49]

OldManEmu wrote:

> If 4.5cm is now the trigged point for an AA aneurysm repair why it wouldn’t be done at 4.2cm with the AVR to avoid a repeat surgery in what could be the near future??

Seems reasonable to me. I just looked at my CT angio chest from 2009. It has my aneurysm at 4.5 cm. Tomorrow morning I get another CT chest angio. Let's see what the dimension is now. But it seems mine will need attention. What will th surgeons say?

Steve wrote:

> 73, and let me know if you want to set up a sked on HF. I operate primarily CW on 40, 20, 15 and 10 meters

Steve, I didn't know you are a ham. I wish I had an antenna. I have a rig but nothing on the roof. I have a B & W window mount whip antenna that I have used with some success on 20 & 15. We'll have to try for a sked. I enjoy CW. Thanks for the encouraging words. I was first diagnosed with AS in 2004, so I'm past the ten year mark now. Like you I have major university hospitals right here in Philly so it really doesn't make a lot of sense to go elsewhere. Feels funny to be walking around most of the time feeling OK. But I know there's this diseased valve that could really hurt me at any time. Weird.

Jim

 

[pellicle]

Hi

There is the tendency to spend too much time looking up medical terms, watching medical videos, etc.

True

. We'll make it all happen.

Indeed!That's the spirit

Best Wishes

 

[cldlhd]

I had wondered about the minimally invasive approach also but as my root and ascending are 4.8 and 4.7 cm it's a no go. Both surgeons I met in Philly , Dr Szeto and Dr Bavaria , both said they needed more access for that kind of gig. As much as the idea of less invasive appeals to me I definitely want them to have the ability to do the job as well as possible and I can understand how traditional OHS would afford that. My BAV is working fine so the aneurysm is the only cause for the surgery. I figure as I'm 45 and other than that in good shape I'm going to get it over with and hope for a good recovery.
I also considered the Cleveland Clinic but there's plenty of top shelf surgeons in Philly and the one I'm using does sternotomies on a regular basis and claims I'll be ready to climb Mt. Kilamanjaro 3 months post op. Fingers crossed.....

 

[pellicle]

Hi there buddy

I had wondered about the minimally invasive approach ... As much as the idea of less invasive appeals to me I definitely want them to have the ability to do the job as well as possible and I can understand how traditional OHS would afford that

having tried to "save time" on my car engine work by not pulling the bits off and then had to buggerize about under the bonnet (hood in American) and bang my knuckles and try to find a bit I'd dropped ... I can only assume that there is equally something to be said for some elbow room for the surgeon too ...

... top shelf surgeons in Philly and the one I'm using does sternotomies on a regular basis and claims I'll be ready to climb Mt. Kilamanjaro 3 months post op. Fingers crossed.....

Planning a trip to Africa?

;-)

anyway, my own experience of injury (surgery is an injury) is that soft tissue takes longer to heal than bone ... so to me the minimally invasive stuff yeilds no net benefits to the majority of us and probably just increases risk (oh, and helps some makers make more money out of gear using us as test beds)

 

[epstns]

When I discussed minimally invasive versus full median sternotomy with my surgeon, he told me that the recovery is really the same. As long as they wire the sternum securely, there are rarely any complications from the bone during healing (pellicle and others are the rarities - in more ways than just this one :Face-Angel.

As it turned out, I was not a candidate for minimally invasive methods, as I needed the valve and a bypass.

As far as I can tell, my recovery was not negatively impacted by the bone's healing.

 

[skeptic49]

Go the results of my CT chest scan from last week. My aneurysm is at 4.6 cm. According to the 2014 guidelines it should be addressed at t he time of AVR. That probably rules out minimally invasive surgery. I'll ask the surgeons in a week.

 

[OldManEmu]

Skeptic
From personal experience I am pleased that you are going to ask about aneurysm and let the AVR determining the necessity for a redo rather than an aneurysm that hasn't been dealt with, as the trigger for redo surgery in the future if required. A 4.6cm aneurysm isn't good. I was 4.7cm at the time of my first surgery and it was 6+ years until it crossed 5cm; however my tissue valve at that stage only had a pressure gradient of 22mm hg and was 3-4 years away from requiring a redo. A redo was done at the time of the AA aneurysm repair so as to avoid another surgery in 3-4 years time.

 

[cldlhd]

Hi there buddy



having tried to "save time" on my car engine work by not pulling the bits off and then had to buggerize about under the bonnet (hood in American) and bang my knuckles and try to find a bit I'd dropped ... I can only assume that there is equally something to be said for some elbow room for the surgeon too ...




Planning a trip to Africa?

;-)

anyway, my own experience of injury (surgery is an injury) is that soft tissue takes longer to heal than bone ... so to me the minimally invasive stuff yeilds no net benefits to the majority of us and probably just increases risk (oh, and helps some makers make more money out of gear using us as test beds)

That's a good analogy. As I've grown older, and semi wiser, I've realized that trying to save time working on a car by not removing the bits in the way makes the job harder and actually takes longer and as my mechanic friend says "as long as you remember where everything goes and you don't have more than one bolt laying around when you're done all is well"....

 

[pellicle]

Hi

When I discussed minimally invasive versus full median sternotomy with my surgeon, he told me that the recovery is really the same. As long as they wire the sternum securely, there are rarely any complications from the bone during healing (pellicle and others are the rarities ...)

Well actually my bone healed fine.. My infection was a benign one (relative to MSR) and only infects wires and prostheses. The concern with my situation was if the graft or the prostheses becomes infected.

Also I consider myself special rather than rare. Like a radio host said here: that's drooling on the bus window kinda special ;-)

 

[pellicle]

... as my mechanic friend says "as long as you remember where everything goes and you don't have more than one bolt laying around when you're done all is well"....

I have a small jar of bolts which seems to grow every time I work on my motorbike. Will be doing the steering head next week (should the parts actually arrive) so we'll see if it gets bigger.

 

[epstns]

Hi


Also I consider myself special rather than rare. Like a radio host said here: that's drooling on the bus window kinda special ;-)

Now THAT one almost got my keyboard a coffee shower!

 

[river-wear]

The more I read, the more thankful I am that Dr. Bavaria gave my little (4.0cm) aorta a little nip and tuck while he was in there. I'd be bummed to go through OHS just to have to do it again when the (presumably) higher pressure of a working valve blows up the tubing, so to speak.

Let us know where you decide to go, skeptic! CC does have the reputation, but I'm still glad I spent my travel budget on Philly instead. You could try CC's second opinion service and get a feel for how things work over there.

 

[skeptic49]

The more I read, the more thankful I am that Dr. Bavaria gave my little (4.0cm) aorta a little nip and tuck while he was in there. I'd be bummed to go through OHS just to have to do it again when the (presumably) higher pressure of a working valve blows up the tubing, so to speak.

Let us know where you decide to go, skeptic! CC does have the reputation, but I'm still glad I spent my travel budget on Philly instead. You could try CC's second opinion service and get a feel for how things work over there.

Michele,

Tell me more about your aorta "tuck"...what does that mean? Did Bavaria re-section it (reduce it somehow?) With mine at 4.6cm I'm wondering what the plan will be. I'll most likely be going with either HUP where you went or Temple, where my cardiologist is...he is recommending a surgeon that Temple lured away from the Arizona Heart Institute.

Thanks,

Jim

 

[river-wear]

Hi Jim,

I had an aortoplasty - IIRC, it was referred to as an S-plasty in the surgical report, where they cut an S-curve in the ascending aorta and stitch it back up to reduce its overall diameter. Mine was only 4cm, so I figured they do that for a small reduction in diameter, and use a graft for "real" aneurysms. I don't know at what size they would switch from one to the other. Here's a study I found that compares the two methods and concludes they are somewhat interchangeable when the aorta isn't "too big.".

http://www.ncbi.nlm.nih.gov/pubmed/11899172

 

[Duffey]

Let us know when you get a surgeon and a surgery date, Jim.

 

[cldlhd]

I have a small jar of bolts which seems to grow every time I work on my motorbike. Will be doing the steering head next week (should the parts actually arrive) so we'll see if it gets bigger.

As long as nothing important falls off at high speed it's just some "added lightness" as Colin Chapman would say....