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Author: Subject: Sean's Nuss Journal
Piano_is_God
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[*] posted on 9-21-2010 at 03:15 PM
Sean's Nuss Journal


Hey everyone,

Well -- I figured it's time that I start my journal here. This community has really inspired me to be proactive with this condition, so I feel the need to give back in some capacity. I hope these next few years of personal revelation can serve as some motivation for others out there with pectus. Hopefully those wanting to take action will find encouragement, as well as those who have been told to 'get over it.' Please know that you do not have to take 'No' for an answer. Do what's in the best interest for you and your health. You owe it to yourself to do that.

With the utmost sincerity,


Sean

------------------------------------------------------

Age: 22
Sex: Male
Location: Santa Barbara, CA
Condition: Pectus Excavatum
Haller Index: 5.6 / Asymmetrical and Severe
Intervention: the Nuss Procedure / Scheduled for 01.14.11 with Dr. Barry LoSasso


I would venture to say that the discovery of my unusual chest surfaced sometime around the Junior High/High School transition. I believe this was when it became more prominent from the perspective of others. Physical education brought with it quite the adventure. Some found my pectus to be aesthetically strange, others had their fair share at poking fun. My friends never really cared all that much, though they had their stabs in good nature from time to time. It was not by any stretch the most encouraging stage of my life. A physical difference -- one that I had no say in -- was hard to digest, especially amidst such a social explosion as high school. It was a killer for romance. The reluctance to pursue female interests was perhaps the biggest demon of all. For a good-looking young lad it was very trying and personal.

My journey up until this year was rather unproductive, and quite the drag. Physicians that I saw over the years did not engage about the oddness of my sunken chest. Come to think of it, I don't recall any doctor ever mentioning a thing about it. A few years back I went to Sacramento in an effort to join the Navy, and even the civilian doctor there appeared to be fogged in. Not only did it go unquestioned, but he was actually more concerned over some hypertrophic scarring that I had on my chest (LOL). There then came a point when I jumped on board the 'get over it' bandwagon. As much as I hated doing it, I wanted to wash my hands of it. I've often wondered how something so out of the ordinary could miss so many radars. But I suppose that's what to expect in a Northern California, sparrow fart town.

Making the move to Santa Barbara, California was the turning point in my life. The change brought me many wonderful things, including the (clinical) discovery of my pectus excavatum. The memory itself is a very dear one, something I can't imagine ever letting go of. It remains to date the most vivid of any. I was lying on my bed, staring down the same canyon that had taken residence on my chest for far too long. You might say that it had overstayed it's welcome. Something just clicked inside of me. I grabbed my laptop and google'd 'indented chest'. And the rest is pretty much history.

As I write this I am nearing the home stretch, roughly one month shy from ending this chapter of my life. Doctor Barry LoSasso is my surgeon and will be performing the Nuss Procedure. As of eight thirty on the morning of January fourteenth I hope to drift to another world, only to wake up to a more beautiful one. I know that may sound a bit selfish, but it's the only way I can encapsulate the mental misery. Finding other ways to explain proves unsuccessful. For me it's like the relationship of certain chords in a beautiful piano composition. It's not something I can turn inside out so easily. It is best defined when the emotional connection is made, and I am left with an appetite free of words. It's the kind of happiness I think we pull ourselves towards.

If you are new to the world of PE and ever need advice or suggestions please feel completely free to send me a message. I am here to help and lend support in any and every way that I can. Don't be a stranger. Remember: I am in your corner!


12.14.2010

------------------------------------------------------

For preoperative photos please use the link below:

http://www.pectusinfo.com/board/viewthread.php?tid=7798


For CT imaging please use the PDF below:

Attachment: CTscan.pdf (159kB)
This file has been downloaded 280 times
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[*] posted on 9-21-2010 at 03:16 PM


Tuesday, September 21st, 2010


Saw my pulmonologist today -- what a bittersweet moment! I was given several lung function tests by the nurse as part of my appointment. The testing took me a good 15 minutes to complete. As explained by my pulmonologist, the results came back with 'below average lung capacity.' Those words brought music to my ears. I'm sure the average person's reaction to those words would not be along the lines of excitement. But for me it was a personal victory, some well-needed ammunition going forward. I'm sure my organs were celebrating inside.

My pulmonologist expects my Haller index to be quite high. Also noted was the extensiveness of my deformity, that it indeed covers the upper and lower areas of my chest. He did not mention anything in regard to Marfans, which was rather refreshing. Further testing is forthcoming, and the goal is to have all of it done within the next week or two. He mentioned that there is only one thoracic surgeon here in Santa Barbara that he would feel comfortable sending me to. And if that for some reason falls through he will find a capable surgeon in LA.

Understanding, cooperative, sincere -- this is my kind of doctor!
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[*] posted on 9-21-2010 at 07:33 PM


Hi Piano_is_ God,

Thanks for the encouragement that you like to give back here. We all surely need that. Btw great screenname. Can see that you're really into music. Great thing!
I hope that you will go through with all the tests soon and that you will have a date soon to look forward to. Keep us posted. All the best!
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[*] posted on 9-21-2010 at 08:01 PM


Glad to hear that the balls rolling for ya. From your pics and PFT's I don't think you will have any trouble getting insurance funding. I def agree with the pulmonologist that your haller should be quite high.

You're choice of surgeon is going to be very important. Do lots of research as you're going to need a surgeon that will correct both your lower and upper PE.




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[*] posted on 9-21-2010 at 11:03 PM


That has me thinking. What are the chances of getting a normal or higher than average reading for someone that has PE, but runs a lot? I'm trying to run around 3 miles a day to increase my fitness level before surgery, but I have yet to get a pulmonary fitness test (hopefully sometime soon). I don't want to shoot myself in the foot by trying to get in shape, but I don't want to get too out of shape either. Is the test smart enough to figure all this out for me?

Anyway, congrats on the bad news :)
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[*] posted on 9-22-2010 at 02:55 AM


I had a haller of 5.9 and wasn't doing any type of cardio prior to surgery and my PFT's came on the high side of normal. Studies have never been able to consistently correlate PE with diminshed lung function. It may very well be that Sean also has some asthma or something else causing his low PFT's, as many people without PE also have diminshed lung function.



" Whatever you have, you must make the most of it. Rest assured that you can
transform yourself, no matter where you started from. The most important body part is
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[*] posted on 9-24-2010 at 02:18 PM


Friday, September 24th, 2010


Spoke with the lady at my pulmonologist's office for the second day in a row. His office has me down for follow-up testing on October 11th. More specifically, they have me down for an Echo, the CT, and then some exercise test. The 11th is a bit stretched, so I did make it a point to ask for 'first dibs' on any cancellations that come about. She explained that his office would give me a jingle if anything falls through.

An appointment with Dr. Phillip West is also in the works. From what I've heard, Dr. West is perhaps the most premier and experienced thoracic surgeon on the California Central Coast. Interestingly enough, I'm having the toughest time finding any information (on him) of value to me. I really hope, for the sake of personal comfort, that this gentleman has more than forty performed surgeries under his belt, with the good majority of them involving children, adolescents, and young adults. My deformity appears to be rather symmetrical, so if he starts giving me the 'Ravitch' speech then I'm definitely jumping ship. I don't want to welcome the idea of having the Ravitch performed on my chest, especially since it's not really applicable to my case. Of course -- an overwhelmingly successful track record is a prerequisite. But we shall see.

Unlike my primary, my pulmonologist is taking this condition very seriously and has been EXTREMELY helpful. He agreed that getting the surgery financed will not be an issue, and also predicts that an operation date will likely be set sometime before January. Talk about the greatest holiday gift a pectus patient could ask for. For the next few weeks I will be knocking on wood!!! :)
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[*] posted on 9-24-2010 at 02:46 PM


Thank you, everyone, for all the positive feedback! It keeps reinforcing just how genuine and superb this community is! :)

The results of 'below average lung capacity' really weren't all that suprising to me. Seeing how my chest does not expand normally it makes sense. If I were to rest my hand on my chest and breathe routinely, I would see almost no outward movement. In fact, the only parts of my hand that do any moving at all are the tips of my fingers and the bottom end of my palm. Thus, I can't help but think that intake restrictions are a product of my deformity. I've never had asthma or any breathing disorders for that matter, which seems to support this even more.

Being a singer, I find myself (more often than not) breathing from my diaphragm. Perhaps this kind of lifestyle has helped me rely less on normal breathing and more on my stomach. Don't get me wrong: the lower end of my deformity has certainly placed some pressure on my diaphragm. I still, however, find 'stomach breathing' MUCH more managable than breathing in and out of my chest on a regular basis.
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[*] posted on 9-30-2010 at 10:19 AM


Thursday, September 30th, 2010


Yesterday (the 29th) I met with my pulmonologist again thanks to another patient's cancellation (I was originally scheduled for October 11th). A big thank you to whomever that was!! I went there under the impression that I was going to finish the remainder of my testing. And, of course -- I was disappointed. I took some silly exercise test that concluded with nothing that hadn't already been revealed in my PFT's. I guess these doctors will milk insurance companies for everything that they can.

My pulmonologist explained that "without question, if you didn't have pulmonary and respiratory restrictions due to your pectus your insurance company would deem it cosmetic, thus denying your surgery." I made him aware that for the past week I had been experiencing this strange 'discomfort' in the excavated area of chest, going as far back as my back. He told me that I could possibly be facing MVP, and that the Echo and the CT would need to be performed immediately to correlate. So my next chore is to play the squeaky wheel and get my primary to expedite everything with urgency. I will be making the call this morning.

The latter part of our follow-up consultation brought about some discouragement. Dr. Phillip West, the thoracic surgeon who may perform my surgery, is not sold on the Nuss procedure and seems to be more inclined to the Ravitch. They worry that because of my age that my bones and cartilage may not qualify for the kind of surgical technique used in the Nuss. As a patient, I felt like arguing this matter seemed a bit futile, so I just held my tongue. Although having 37 years of thoracic surgeries under his belt, it appears to me that this guy may just not be all that experienced with the Nuss. Of course -- nothing can be determined until the CT scan is provided to him along with the Haller. But it looks like I may soon be consulting with an 'old school' surgeon. :puzz:
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[*] posted on 9-30-2010 at 11:44 AM


Hey Piano,

I don't want to throw cold water on things but for what its worth, IMO there is no way concern about a 22 yo's bone's and cartilage is a valid reason not to do a nuss. My doctor originally studied under Dr Fonkalsrud (the ravitch guru). She has done over 275 ravitch procedures and after a lot of evaluation and training switched to nuss because she feels for most situations it is a much better procedure. She has done the nuss on patients in their 20s, 30s, 40s and 50s. Most doctors tend to get brainwashed with what they were trained on and don't want to change. You are young and have a lot of good options don't proceed if you are uncomfortable with the doctor's experience and the procedure.

Can you share who your insurance carrier is? In my case it had to be "medically necessary" which generally meant at least 2 out of 3 things; Haller over 3.5, compressed heart, physical symptoms. I don't have severe symptoms but for sure the first two. A good surgical team should be your best advocate to get you approved it that's the indicated direction.

For sure do all your research before you do anything and if it doesn't seem right...do more research. Again, just my humble opinion.

OBY
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[*] posted on 10-1-2010 at 06:27 AM


He wants to do the ravitch because thats what he's comfortable with, not because it's whats best for you. He's possibly never done a nuss. Don't settle for what he wants to do, it's not him that has to live with the results. You're just up the coast from Dr. Losasso's office, have you tried contacting them?



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[*] posted on 10-1-2010 at 09:28 AM


@ OBY: Thanks for the feedback! Truthfully -- all I could do was play the 'dumb' patient role. When he explained Dr. West's concerns about the Nuss and my age/body composition I was honestly quite amused. What I've gathered is that Dr. West (probably) has performed very few of them. When I consult with him directly I certainly plan on getting a better idea. My insurance carrier is Health Net, and the group who manages it locally is Santa Barbara Select IPA. I'm not exactly sure what their criteria is, but my pulmonologist explained that respiratory and pulmonary restrictions coupled with a severe Haller would do the trick. Overall I think I'm a pretty level-headed guy, and I definitely don't plan on jumping into something if I'm not entirely comfortable with the situation.

@ Sinister: My insurance thru Health Net is outlined in such a way that it makes doing things outside of my network very difficult. If I had the financial resources to commit my efforts to Dr. Losasso I absolutely would. Since I do not have that luxury I'm somewhat at the mercy of my IC and physicians. It seems that the best and only thing I can do, at this point, is play the 'squeaky wheel' card and get this testing process done quickly. I go in for my CT scan today on another cancellation, and I'm hoping to have my echo set up for early next week.

As soon as I get my CT scan results/pics I'll post them up. Stay tuned, and thanks for all of your support!!!
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[*] posted on 10-11-2010 at 04:56 PM


Monday, October 11th, 2010


Met with Dr. West today. The consultation took no more than 10 to 15 minutes. His words: "Given your age, I wouldn't feel comfortable performing surgery on you." In return, he explained that he would have me referred to a Dr. Waish at UCLA Medical Center. I suppose I can do nothing more than appreciate the man's honesty. After all, I would hate to have tested the patience of a reluctant yet desperate surgeon. The age concerns are really amusing at this point, as if I'm well beyond my years. Pretty hilarious, but what can ya do??

He was kind enough to show me my ct scan (should have my personal copy soon). Results indicated symmetrical indentation (w/ rotated sternum), heart displacement, cardiac compression, and a haller index of 5.6. I will be sure to provide images when I receive the CD.

My thoughts: Ehh -- slightly frustrated. The only real reason for this is my overall lack of patience. The reality of having to jump through more hoops is a bit disconcerting, but it is what it is. If anybody has any info on a Dr. Waish at UCLA medical center your input would be wonderful and greatly appreciated. As we all know: the more ammunition the better! :)
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[*] posted on 10-11-2010 at 09:23 PM


Be cool, calm and patient. Dont be anxious for any part of a PE repair. Be persistant with all involved, most importantly the surgeon and the supporting staff. Dont quit until you are dentless and ready to play shirtless entertainment. :D

Randy




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[*] posted on 10-12-2010 at 05:30 AM


Hi Sean,

Sorry you're having to go to so many different appts and see a new doctor. Just try to be patient, hard as it is. It would be better to wait to find the best doctor to do this than to get in quicker for your surgery only to have less than wonderful results from a less-capable surgeon. The months of waiting are temporary and will be over soon. But the results of your surgery are hopefully permanent.

Good luck finding a good Nuss surgeon. You're young and you should be able to have a great correction!
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[*] posted on 10-13-2010 at 11:13 PM


Too funny, Randy! I'm no John Legend, but I'm sure I could do some damage :D. It seems at this point that the pain, despite how tremendous it may be, is something that I can only welcome. I don't want to eat my words or anything, but I'd prefer to have the reality settled so that I can move forward. I've been told that a person's twenties should be the greatest years of their life. I really would hate to put a 'dent' into that statistic!

Thank you for the kind words, JoJane. I've been refered to a Dr. Mary Maish at UCLA medical center. My personal findings indicate that she is certainly capable. And quite frankly, I absolutely love the idea of having a female surgeon handle my case. They tend to be a more helpful and genuine, minus the ego business that most male doctors have shown me. The bonus is that my pectus is quite symmetrical, which may be the one thing I have going for me. I'm looking to have surgery before January, so there's a solid chance that you and I will be traveling the road to recovery at the same time. I guess we're in for the ride of our lives. :D
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[*] posted on 10-16-2010 at 09:22 AM


Here's my CT with an index of 5.6:


***technical difficulties***

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[*] posted on 10-16-2010 at 09:42 AM


Hey Sean, not sure what happened but your CT didn't come through in your last post. Anyway, I'm wishing you all the best as you head into surgery in the next few months. I think you're right that since your PE is symmetric it should be easier to correct, so you have that going for you. And you're young, so that's a huge plus in your favor as well. Keep us posted on when you'll be scheduled to go in.
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[*] posted on 10-16-2010 at 06:52 PM


P-Sean All you do is preview your post. When doing this look at the bottom for an attachment / brows button. Browse/attach/ post and there it is.

If you dont see the preview button next to the post button, then simply post your post, view the new post on the thread, then "Edit" your post. The attachment/browse button will be at the bottom.

Hope this helped. I have edited your post for example.




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[*] posted on 10-18-2010 at 08:46 AM


Let's try this again:



Attachment: CT scan.pdf (159kB)
This file has been downloaded 338 times

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[*] posted on 11-4-2010 at 07:07 AM


Tuesday, November 4th, 2010


Yesterday I went to UCLA to visit the thoracic surgeon that I was referred to by my doc. The surgeon, Dr. Mary Maish, indicated that she was a disciple of Dr. Fonkalsrud and performs only the modified ravitch on her patients. For me it was simple: "thanks, but no thanks." I explained that because of the procedure's radical nature and invasiveness that I would not feel comfortable putting my body through that kind of abuse. I made it fairly obvious that I'm pretty much sold on the Nuss, and that I don't plan on budging. There were two other surgeons with her, and they seemed to think that due to my age I was not an 'ideal' candidate for the Nuss. Same old song and dance, right?? So, of course -- I had to bring up OBY's recent surgery for ammunition purposes :P. Talk about breaking the ice! Everything went pretty much downhill from there. I, once again, left another physician's office disappointed.

So at this point I'm running on fumes. The emotional energy here is really taking it's toll. I have been doing all the right moves, and in all the right places. But for some reason I just can't catch a well-needed break. You would think that my next move would be to see Dr. Losasso, right? I most certainly would, but I've heard thru the grapevine he requires marfan's testing prior to performing surgery. Again: "thanks, but no thanks." I have no intentions of corralling my efforts there. Just because I meet one or two symptoms of the couple dozen possibilities does not convince me whatsoever. For me it amounts to more wasted time, more wasted funds. Thus I am left with (really) no other option but to see Dr. J at the Mayo Clinic. This morning I'll have my primary sign off on the referral so that things can get moving with the IC. I suppose I should start looking at air fare as well. Time to do some damage to the wallet!!

At any rate, this is becoming quite the drag. I'm hanging in there, but by the thinnest of threads. If anyone can offer any advice/suggestions it would be dearly appreciated and welcomed. You guys are my lighthouse. :)
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[*] posted on 11-4-2010 at 05:27 PM


Hey Man, Hang onto that thread!!! Although I can offer no advice or suggestions, I can tell you for sure I'm feeling your pain. I'm so not looking forward to any kind of run around but expect it.

Seems like your going in a good direction with Dr. J. Judging by OBYs experience. I wish there were more of her patients on here though.
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[*] posted on 11-4-2010 at 09:51 PM


Hey Sean,

I remember how emotional it can be pre-op and I haven't gone through what you are. Nonetheless it was nerve racking and I would get very anxious to hurry things up. But you should be very proud that you are not settling. Keep fighting for yourself and you will get the result you want. Thanks for the updates




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[*] posted on 11-7-2010 at 09:58 AM


Sunday, November 7th, 2010


So it looks as if I was misled a bit on Dr. Losasso. Members are now informing me that he does not require marfan's testing on all of his patients (only possible candidates??) Anyhow -- I will be seriously considering both Dr. J and Dr. L at this juncture. My doctor seems somewhat reluctant on the idea of sending me out of state for consultation, so I may have some resistance there. I will have a better idea come tomorrow. I suppose I should be pleased with the fact that I have options now, very good ones as described by the veterans here. My greatest hope is that neither surgeon is running an overly slammed schedule. All of my testing has been completed, so my goal for getting nuss'd in December/January is still high on my radar. Time for me to bring back the game face.
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[*] posted on 11-7-2010 at 10:12 AM


Dr L is fantastic according to the folks on here. I have had a tough time getting everything scheduled, however. So be prepared for a wait. Jackie is is slammed with work (even if she claims she's not). I first called Dr L in June. I was able to get in for a consult on 9 Aug and I still haven't got a date for surgery. 90 percent of the wait has been just waiting for Dr L's office to get the paperwork done. Also, be prepared for a long wait once you get to his office. I waited in his office for over three hours even with an appointment before I got to see him. It was the longest wait I've ever had for a doctor in my life. I think they are currently in the process of selling the building he is in or something, so I'm not sure what's going on. Don't get me wrong, they are worth the wait from what I hear. Just be prepared. Also, be aware that I'm impatient in general!

I will say that he will spend as much time with you as you would like once you get in to see him. He answered all my questions and didn't make me feel rushed.
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