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Author: Subject: My long Nuss journey journal (Summer 2000 - Present) - Nussed by Dr. J on 1/5/2016
SgtBeefheart
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[*] posted on 10-3-2014 at 11:58 AM
My long Nuss journey journal (Summer 2000 - Present) - Nussed by Dr. J on 1/5/2016


Hi everyone -

Quick info first:

- 23/M
- Nussed in summer of 2000 at Connecticut Children's Hospital by Dr. Hight (who just retired this summer)
- Bar removed in summer of 2002
- Outcome was a mixed bag... plenty of info below.
- Heavily considering re-do with Dr. J

Longer story (without going into TOO many details, definitely feel free to ask any questions):

My experience with PE seems to differ from a lot of people here. I had pretty severe PE since I was very young - in fact, I have been aware of it for as long as I remember. My parents always knew it was a problem, too, and because of how early it showed up, I was always told it was due to my twin sister kicking me in the womb (we get along better now, by the way). Now I'm pretty sure this is false - as far as I know this is all genetic, and I've never heard of physical impact causing PE in any way. You'd think if this were a real possibility, then twins would have a huge incidence of PE. Anyway....

Most physical activity as a kid left me huffing and puffing. Obviously the whole condition had psychological consequences as well. No need for elaboration on any of this, I'm sure anyone here knows what I'm talking about. My parents finally decided enough was enough, and were convinced that surgery was the best option after hearing about the somewhat new and less invasive nuss procedure.

A lot of the details leading up to it were a bit of a blur, but I had the surgery done in the summer of 2000. I do remember many of the things people talk about today - struggling with the spirometer, hellish laps around the hospital floor, bad reactions to painkillers, etc. Though, all in all, the experience went pretty well. I was mostly fixed (the dent wasn't totally gone, but if you saw me before, you'd realize how happy I was with the result). I was out of the hospital in 6 days, and within a month I think I was doing quite well. I didn't turn into an athlete, but things were definitely better physically. I had the surgery done the summer before 5th grade, and I hardly remember the bar existing at all in 5th or 6th grade (except as a source of pride - I was the closest thing to a robot in the entire school). Removal after 6th grade went smoothly, and I was done. There was still a small dent which was asymmetric on the right side, and I still was not a great runner or anything, but all my follow ups with the surgeon indicated I was doing fine and whatever problem was left was purely cosmetic. I used to be close to passing out just riding my bike around the neighborhood, but within a month of the bar being in, I could pretty much keep up in pick-up sports, gym, etc. All in all, the surgery went well, I think Dr. Hight did a good job, and I don't really have regrets about the timing or the decision to have the procedure.

Now, here's where things get tough again...

It's been a long time since 2002, and I've definitely experienced some regression since then. There's a reason many doctors suggest waiting until the teenage years to perform this surgery. Especially in the past year, minor symptoms have become a bit more prominent and previously non-existent symptoms have emerged. Physically I feel short of breath much more often, I always get dizzy standing up, I have chest pains once in a while (ranging between 1/10 and maybe 5/10), I'm always a bit fatigued, I have occasional heart palpitations, and I think my exercise tolerance has hit a wall. Nothing individually is *that* bad, but everything together is pretty unpleasant, and the thought of this stuff getting worse frightens me. This leads to the psychological symptoms. I've started thinking about my chest much more often than I used to. I think it has lead to some serious anxiety and has been a pretty big drag on my mood and livelihood. I could go into much more detail here, but it's maybe enough to say that the only way I'll return to my normal, fulfilling life is either through surgery or a serious change of heart. I'm hoping that writing this out will be a first step towards reaching that point, no matter how I get there. It's been hard to talk about PE since it has become a problem again, and in particular I'm afraid to open up to my parents, who have already gone through so much stress to help me.

I think the difficulties I'm having deciding everything are similar to others' here: I'm living an OK life, and clearly some of the drag this PE has had on me has been self imposed. It's also hard to trace symptoms directly to PE, so who knows if surgery would even pay off.

That being said, I want to give serious consideration to all possible options, since the worst possible outcome would be to think about this every day for the rest of my life without doing anything about it. If most of this is in my head, I need to just get over it. Something's gotta give.

I've actually already had all of the necessary tests for surgery except the CT scan or MRI. When the palpitations were getting worse, I saw a cardiologist who ordered all of the heart-related tests. Things came back relatively normal, which I am glad about. My plan is to talk to my parents and PCP about the best options going forward, and maybe get the CT scan. I'm very confident my Haller is big enough for surgery, but would love to see how things look inside me.

If I do seek a serious surgeon's opinion, I've already decided I'm going to see Dr. J. I've read so many great things, and my insurance is in-network.

I'd already like to thank everyone who has posted here about their experiences. You've all helped a lot, and I'll be sure to contribute back.

More info / updates / pics soon I guess?

- Sgt
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[*] posted on 10-5-2014 at 01:40 PM


hey sgt. 'just getting over it' is hard because its always temporary. anxiety is a recurring theme here and it may be a result of heart compression. see member sunshine5. it sounds like your parents would want to help so at least let them listen. you have time, the more you learn the better you will feel about your decision.
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[*] posted on 10-15-2014 at 07:45 AM


Hey Sgt,

It takes guts to share these personal things on here, so you've already taken a huge step! My advice to you is to take some time to read the redo journals on here. They are sometimes more complicated procedures (but of course Dr J is the Redo Queen!) but it is not a decision to make in haste.

I think it is just mind-blowing how far the surgical advances have come for performing this procedure. If you decide on a redo surgery, I have no doubt that you will experience a much better outcome.

As a side note, I too am a twin and also have heard the "your twin compressed you in the womb" theory. A bit cruel to blame our fetal siblings (LOL!) but as you mentioned, is this was true, more twins/triplets would be born with PE.

I wish you all the best in your continued search for answers. :)




"Man never made any material as resilient as the human spirit."--Bernard Williams

My journal: http://www.pectusinfo.com/board/viewthread.php?tid=11088
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[*] posted on 10-15-2014 at 08:58 AM


Sarge,

You have the answer as to whether a redo is worth it in your beefy heart! I know the trauma from your first Nuss lingers but is your determination strong enough to overcome any obstacles that stand in your way? Time will tell.

You have been given a great gift in having insurance to pay for a redo because they are often so complex the costs skyrocket for uninsured patients. For this reason alone I would be calling Kelly (480) 342-0958 and Dr. J to get a further opinion.

However, do what's right for you, forever and always.

T.
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[*] posted on 10-15-2014 at 01:10 PM


Hey Sgt - It seems like you've hit the cross roads my friend. Physically I would ask how your daily life/activities are and if a change in life style would help you with your physical struggles (eating better and more exercise). The pectus however wont be improved by any of that, and you may still suffer physiologically. Remember though surgery shouldn't be taken likely and comes with its own devils as I've learned and will still be painful. My advice would be that you should look into the surgery and proceed because the change will come right away where as if you don't get it done than you will have to overcome your physiological struggles which tend to be more difficult to deal with, in my opinion..
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[*] posted on 10-16-2014 at 12:20 PM


Hi everyone, thank you for the comments, a lot of great insight.

I've definitely thought about this for a while (it's been maybe 9/10 months since I first started reading this board and considered the possibility that a redo would be good for me). My main motivator is health, but health is a complex mix of factors. My mental health affects my physical health, and vice versa - it's tough to pick apart the two. I've felt way worse in the past year, but I don't know how much is attributable to PE, how much stems from recent anxiety/depression, and how much could be due to other health factors unrelated to PE. Add into the mix that I've always been a bit of a hypochondriac, and this issue becomes very hard to sort out. I have a deep, growing feeling, though, that a proper fix for my PE is a big part of the overall solution.

That being said, I've always been a healthy eater, and relatively active. In the past year, I've mostly been very active (running a few miles 3-4 times a week, and more recently, lifting weights at the gym). If anything, though, exercise has been getting harder. I'm often pretty dizzy by the end of runs or after a set of weights. It's not THAT bad in the grand scheme of things, but I shudder at the thought of dealing with this for the rest of my life, even if I assume things don't get any worse with age!

The stars seem to align in a way that suggests I should go for the surgery soon. I have insurance that will cover it. I have a job where I can easily take a month off to have the surgery and recover. I'm young and pretty healthy. But obviously this is a stressful decision to move forward with no matter how well the pieces fit together. Every journal I see here about a good fix makes me slightly more comfortable moving forward. And heck, I've done this before. I'd like to think I'm a little stronger now than I was at 9, but I think I'm not giving my 9 year old self enough credit. :cool:

Just a quick note: my last surgery wasn't bad, or even necessarily a failure. It allowed me to life a pretty active life from the end of elementary school through college, and it fixed a huge part of my severe PE. But it came at the wrong time, the bars probably weren't in long enough, and I had quite the growth spurt.

I'm planning to e-mail Kelly this week about my situation, and trying to set up a CT scan. I am definitely open to the prospect of not having this surgery, but it would probably require a reversal of my current state of health / energy, and a consultation that suggested my PE was not having a sizable physical affect on me.


More details as they come... I've got plenty more thoughts about my situation + PE in general, but need some time to think about them and type them out. For better or for worse (mostly for the worse, especially recently), my PE has become intertwined with my inner mental state and my personal life, mostly through my own doing.
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[*] posted on 10-16-2014 at 06:15 PM


Sarge,

My opinion is that you have been robbed of a desirable result due to incorrect planning by health care professionals and lack of research on Nuss outcomes (I was 21 in 2002 and didn't even know what PE was lol). You are a good soul to not have any anger, but I'm angry that you have to even consider going through surgery again.

A redo is a big deal, I can remember before my modified Nuss/Ravitch Dr. J was doing a redo for almost 7 hours. I don't know how complex your case is, and hope for the best for you but having to go through all that BS would be traumatic for even the strongest of strong. Determination will outweigh all of the BS and pain though. Dr. J is the greatest and is an extremely compassionate and understanding lady. I'm almost downright jealous you have such an opportunity to have her turn you into an underwear model as well.

As a 9 year old, I have to give you a huge round of applause for going through it. It's disturbing to me that a child would have to go through a complicated surgical procedure only to grow into an adult and have to live with the (undesirable) outcome. Children are so wholesome and impressionable, it's nearly heartbreaking some can be robbed of quality of life due to PE or surgery.

There are many out there just like you that are lurking and suffering in silence. I invite all of you to contact me by U2U or post here anytime for support.

Sometimes I wish the enrollment process to the boards was free but that may attract some unwanted folks. If/when I obtain great wealth I wish to make that happen by either a massive donation to PDSGC or even offer to buy the rights/domain from techzsue (I doubt it will ever be for sale lol because it's so close to her heart).

Keep trudging along, the trenches will be thick ahead.

T.
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[*] posted on 10-17-2014 at 05:56 AM


Hi
Like you, my pectus was very apparent as a baby. My mom told me that it was a result of being born too soon after my brother-1 year to the day. Irish twins!

My first correction- an early Ravitch repair was a disaster. I was only 8, but I can recall the pain and discomfort vividly. And it lasted a long time.

Fast forward 40 years- and I'm having symtoms of heart compression: palipitations, wierd wake me up in the night heArt issues, difficulty drawing a full breath- and exercize intolerance despite being very fit. And the sudden panic attacks- like someone grabbed my heart- and I'm like one of the calmest people you will ever meet!

Without going too long- a year ago I had a second Ravitch at Johns Hopkins Hospital. I could have gone to Dr J, I did fly out to Phoenix to consult with her, but I decided to stay close to home.

I'm much better now- NO more heart issues. Gone are the panic attacks. The breathing is somewhat improved. The recovery was very very uncomfortable. Just when I thought I was in the clear- boom- I dragged a heavy trash bag down the hall- and got costochondritis. Minor setback.

I think you should go for the re-do. If it's not cosmetic, though that counts too- do it for your health. Just know that all of the dread and pain and discomfort will be back after the surgery. But you will get better
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[*] posted on 11-15-2014 at 08:04 PM


Hey Beefheart,

I am incredibly similar to you in that it's difficult to pick apart what symptoms of mine are mental and what can possibly be attributed to PE. I struggle with anxiety and depression as well and when my anxiety symptoms first started cropping up 6 years or so ago my first belief was that it was my PE. A few years of Doctor's telling me it's just anxiety and it has become quite difficult to try and pick apart the truth.

I'm currently waiting on a call back from Kelly at Mayo to get my testing started so hopefully i'll find some answers soon.

It's been a month since you posted on this thread, any progress with the CT scan?
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[*] posted on 11-16-2014 at 07:58 PM


Hi -

Sorry for the lack of updates - unfortunately, I kind of had a tough/busy month and let things slip a bit.

I did decide to set up an appointment with a local Pectus doc first (I'm near Boston now, so there's a lot of good hospitals), just to have someone here to talk to and test with. Through this past month, I had the idea I would just find the right time to set up something with Dr J. Things keep coming up, though, and I keep pushing this off since it's such a big step to take. It's easier for me mentally to keep things local right now.

Still plan to talk to doc and get a CT scan. Already got in touch with someone at Mass General Hospital, who referred me to two surgeons who would see me.

I've been keeping in shape, but I did sort of have a scary moment this weekend while I was hiking (admittedly following a really bad night's sleep, which may have played into this a bit). Near the end of a tough stretch, I found myself gasping for air in a way that reminds me of exactly what it felt like when I tried to run my first mile in elementary school (when my pectus was really starting to show itself). I've never really had this feeling since my first surgery. Ugh. :( Beautiful hike, at least.... :)
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[*] posted on 2-8-2015 at 12:48 PM


OK - quick update. I was quiet for the past few months because there was a lot of stuff going on in my life, and unfortunately I really had to put my PE thoughts on hold.

Good news, though - I finally have an appointment this Wednesday with Dr. Daniel Ryan of Mass General Hospital. Apparently he and Dr. Daniel Doody do Nuss surgeries together at Mass General, and both studied under Dr. Nuss himself. I'm still leaning towards talking to Dr. J eventually, but I'm glad to be able to talk to people who will understand what I am going through and be able to diagnose my specific condition. The assistant said they specifically book these appointments very long (over an hour) because, in her words, "there is obviously a lot to talk about." This was an enormous relief to hear, for reasons I will describe below.

I don't think I ever mentioned an appointment I had with a pectus doc last January when I lived in St. Louis. Since the doctor who performed my first Nuss retired, basically all of the followups I had with the original hospital (Connecticut Children's Hospital) were 10 minute appointments where an assistant measured my dent with a ruler and told me I was fine. Not very thorough. Last January was when I started to get anxious about my chest again, and when I really become aware of my symptoms. So I found a pectus doc in St. Louis: Dr. Sasha Krupnick at Barnes Jewish Hospital. Dr. Krupnick was the head of the "Adult Pectus Excavatum Clinic" at Barnes, which gave me some hope that he could give me some good insight into my situation. Mostly, I wanted to get all of the anxieties and questions out of my head, and bounce them off of someone who really knew what they were doing - someone who could give me informed & objective (but also personal) opinion. I don't really want to go into too many details, but the appointment was a disaster in every possible way. The office scheduled me for a CT scan, which my insurance then denied (which I found out when I went to get the scan, not ahead of time). Then I called insurance, who said the doctor's office simply didn't respond to their request for a signoff on the fact that I had pectus surgery in the past - this despite the fact that they had all of the records of my previous surgery. After a terrible back and forth (and two cancelled appointments), I got an X-ray and saw Dr. Krupnick, who talked to me for less than 5 minutes. He basically told me that the heart adjusts to any abnormal chest wall growth, and PE was only a problem if I wanted to be an olympic athlete. Then, he immediately offered to perform the Ravitch surgery on me if I was interested. The whole thing was bizarre and draining. The takeaways: I suggest no one see Dr. Krupnick in St. Louis, and this experience was part of the reason I wasn't able to rebound and search to find another pectus doctor relatively soon after.

I will give a big update after my appointment on Wednesday. Baby steps....
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[*] posted on 2-8-2015 at 02:45 PM


Hi Sergeant.

I'm so sorry to read your story, but inspired by your resilience. Keep on going my friend.

One key learning I've taken from the multitude of stories on here is that you can't underestimate the importance of genuine expertise in the medical staff.

So many doctors describe themselves as PE experts, but in reality only a handful genuinely are.

I would really urge you to consult a genuine expert like Dr J.

I'm personally going for Prof Schaarschmidt, in order to tap into his vast experience & expertise.

Good luck & keep us posted.

I'm rooting for you, as I'm sure everyone on here is too.
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[*] posted on 2-8-2015 at 05:44 PM


Hey Sarge...... man I tell you what. I read stories like yours and I think to myself, Do I really want this thing out right now? Yikes.....

So sorry that you're even faced with having to go through this again. If you're truly serious about round 2 go to DJ..... she's the Master Re-do-er. Ditto what Tim said. She's likely the best Nuss surgeon in the world right now. Maybe you should give Jackie (pectuscoordinator) a call.... she's fabulous and we'll get you moving in no time.

Just my two cents. Whatever you decide do what feels best.

Take care,
Seaner




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[*] posted on 2-11-2015 at 01:04 PM


Thanks Piano+London.

Saw Dr. Daniel Ryan at Mass General hospital today. The appointment was very informative. Dr. Ryan is the first person since my first surgery to say that my PE was clearly affecting my heart and lungs. A little scary, but validating at the same time. We talked about a lot of things, some of which I've never heard or read on these forums, and I'll try to recall as much of it as I can:

- The effects of PE can be worsened by the shape of the upper/middle spine (and not in the way you might think). If you look at the spine from the side, it has natural curvature (see: http://hjd.med.nyu.edu/spine/sites/default/files/spine/figur...). Dr. Ryan pointed out that my back was straighter than normal (particularly in the "Thoracic" portion of the picture above), which is somewhat common in PE patients. This results in even less room between the spine and the chest, and can cause more compression of the heart. This is a problem in combination with PE, but isn't really an issue on its own.

- One of the problems with PE is the way that the sternum reacts to breathing. I've noticed this myself, so it was really validating to hear Dr. Ryan describe it. When a PE patient breathes in, the sternum actually moves slightly inward (as opposed to pushing outward, how it normally should). I forget some of the details he said, but he thinks this faulty mechanism is a big part of PE and why it has a big affect on the pulmonary function of PE patients.

- Personally, I have lower, asymmetric PE (with my dent mostly on the right side). Dr. Ryan talked about the difficulties in addressing this type of PE, and how they are handled - in his case, usually some modified Nuss+Ravitch technique.

- Some anecdotes about the surgeries Dr. Ryan and Doody perform... average age is 18. They generally suggest operating on younger patients (before bones are done developing), but they do plenty of 20-30 year olds as well. They use an epidural. 1-2 bars depending on the case. Unfortunately I did not get a chance to ask about stabilizers vs. sutures, and any other specifics about how they perform the surgery. Since I am leaning towards surgery with Dr. J, I wasn't thinking too hard about this stuff, but I'll ask if I get another chance.

Even though I am just considering a redo with Dr. J (since I have the opportunity and resources to see her), Dr. Ryan and Doody both seem extremely experienced and knowledgeable about PE and the Nuss procedure. I would recommend them to anyone in the northeast who needed to stay local for one reason or another.

For the short term, I am still working with Dr. Ryan's office, since I want to get a CT scan done locally. They said they are going to order it in the next week, and I can decide where to go from there. If I remember anything else, I'll post it. Otherwise, I'll be back after the next steps are done (CT, getting in touch with Dr. J's office, etc.)

Oh, one more thing from the meeting. I described my bad Dr.'s appointment in St. Louis, and the first thing Dr. Ryan asked was if this doctor only performed surgeries for adults. I told him yes, and he said that generally speaking, pediatric surgeons who also operate on adults tend to have much more experience with the procedure than those who only operate on adults. This is due to the fact that PE surgeries were performed on children for a much longer period of time than they have been on adults. I think his instinct is correct - Dr. J seems to be an exception in all of this.

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[*] posted on 2-15-2015 at 10:38 AM


Update - got a CT scan on Saturday. I couldn't actually remember if I ever got a CT scan for my first surgery (just a lot of vague memories of standing in front of loud imaging machines), and was a little nervous that I might be doubling down on radiation. But the second I walked in to the CT room, I realized I'd definitely never had one of these before. It was a really weird experience: at Mass General (maybe this is common elsewhere too), the CT machine talks to you with a robot voice, telling you when to breathe and when to hold.

Results are being sent to the doc this week, and I'm very excited to hear back. This week, I did get results back from a pulmonary function test. No asthma, but a somewhat restricted lung capacity. Go figure! :eyes:

Had a very good talk with my mom, who is getting on board with the idea that I might have to go through with this surgery again. Now she's much more supportive and open minded than the first time I brought it up with her. I don't blame her - her gut reaction was disbelief that the first surgery was for nothing, and she wondered what made me think things would go better the second time around. On the first point, as I said, the surgery still improved my quality of living for many years. On the second point, I had the surgery barely two years after it debuted - before doctors used cameras to guide the bar through, before doctors used more than one bar, and before doctors really got a feel for the techniques that result in the most successful repairs. She's coming around to these points and it feels great to have her support.

In a matter of days, all my tests will be complete and in one file. I'm going to talk to Dr. Ryan about them, and likely start a file with Mayo after that. No matter how perfect Dr. J seems for this surgery, I like the idea of having two opinions, which besides convenience, is the reason I'm doing everything locally first.

There are so many great journals right now! They make me a lot more comfortable about this surgery, and aware of how tackling it as an adult will be different from my past experience. Keep it up everyone.
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[*] posted on 2-15-2015 at 11:57 AM


Woohoo! Progress!! Sure is a relief, isn't it.



"Man never made any material as resilient as the human spirit."--Bernard Williams

My journal: http://www.pectusinfo.com/board/viewthread.php?tid=11088
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[*] posted on 2-20-2015 at 10:16 AM


Just got a call with CT results. Haller index: 5.3

Meeting with Dr. Ryan again on Wednesday, and calling Mayo today to start a file. All my tests are done!

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[*] posted on 2-25-2015 at 11:24 AM


Saw Dr. Ryan today. We went through the CT scan, and went into more detail about his surgical techniques and what he recommends for me. I have pretty asymmetric PE and he seemed pretty sure I'd warrant a combination nuss/ravitch, but I'd only need 1 bar since my upper chest is basically 100% normal.

Without me going into too many details, he seemed well informed and had a lot to say, BUT he's only operated on ~30-40 adults. Most of his operations are on people aged 15-18, and he's done over 150 of these. I've gathered from these numbers that he has done only a handful of adult re-dos. All in all, he seems like an experienced surgeon, but I'm not too comfortable with his level of experience with my specific demographic. Especially since my demographic is the hardest to operate on.

Luckily I booked a consultation with Dr. J, on April 6th. It's going to be hard to sit tight until then. I'll be doing plenty of exercise in the meantime - already upped my workout routine from 3 days a week to 5. I'll get a copy of my CT scan and get some pictures up in the meantime.


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[*] posted on 2-26-2015 at 10:51 AM


Hi Sgt.

My personal opinion, for what it is worth, is that you should get as much experience at your operating table as you can.

Especially if you have anything that isn't 'vanilla', such as asymmetric PE.

I have no evidence about this guy, but from what I hear, Dr J is the person you need if you're in the US. If you can get her, then push as hard as you can.
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[*] posted on 2-26-2015 at 12:15 PM


It looks like you're well on the way to getting your chest sorted out!
I have to agree with Tim here, get the best you can get, even if it requires a bit of fighting. From what I've seen, Dr Js results are nothing short of amazing.
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[*] posted on 3-17-2015 at 05:39 AM


Hi Sergeant,

Any word on the CT pics?
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[*] posted on 3-17-2015 at 08:44 AM


My appt. with Dr. J in on April 6th, and I'm going to try and grab some pics from her office while I'm there. If I book the surgery then, I'll probably start a fresh diary to make the countdown more official anyway. That'll include CT scan and chest pictures. Pretty sure I also have some old pictures of me as a toddler with PE, and some post op pics from 2000. I could put together a whole scrapbook of this stuff... :eyes:
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DaveM
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[*] posted on 3-17-2015 at 10:05 AM


That's great news! Don't forget to do some sightseeing while there! There are many great sights in Tonto National Forest.



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[*] posted on 4-8-2015 at 04:31 PM


Hey everybody -

Pretty exhausted / busy following my trip, but I didn't forget to come back here and update! I plan on writing a lot about my appointment soon. Very short version: it went very well, I learned a lot, and gained a lot of confidence in Dr. J and the entire team. Waiting to hear back when I can be scheduled.



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[*] posted on 4-30-2015 at 05:33 AM


Hi Beefy, anything to share re: your appointment? All Ok?
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