Comments for Pectus Excavatum Blog http://pectusblog.com Trying to help inform those affected by Pectus Fri, 23 Sep 2011 15:57:43 +0000 hourly 1 http://wordpress.org/?v=3.0 Comment on All is Well :) (Day 126, Ch. 3) by Heather O http://pectusblog.com/2009/04/all-is-well-day-126-ch-3/comment-page-1/#comment-9596 Heather O Fri, 23 Sep 2011 15:57:43 +0000 http://pectusblog.com/?p=339#comment-9596 Hi, I am looking into the modified Ravitch procedure as a 33 y.o. female. I'm very curious to see how you feel now that you have had a few years to heal. Any feedback would be welcomed. Also, any advice on how to prepare for surgery and how to get through the healing process would be great. Hi, I am looking into the modified Ravitch procedure as a 33 y.o. female. I’m very curious to see how you feel now that you have had a few years to heal. Any feedback would be welcomed. Also, any advice on how to prepare for surgery and how to get through the healing process would be great.

]]> Comment on The Ravitch Procedure (Day 71, Ch. 2) by admin http://pectusblog.com/2008/09/the-ravitch-procedure-day-71-ch-2/comment-page-1/#comment-9595 admin Thu, 16 Jun 2011 18:38:29 +0000 http://pectusblog.com/?p=210#comment-9595 Lori, You guys have been through so much!!! Thank you so much for sharing all of this. That must have been so scary while her heart was "washing" and her lungs were trying to get used to everything. I am so so so glad that she is doing better! Oh, man, that is such great news!! I am sooo glad you guys went to Dr. Harrell! I felt so hopeless before I saw him and I agree with everything you said about him. I also agree that I would never go through all I went through for cosmetic reasons. The risks and the pain are way too great. I'm glad that Dr. Harrell doesn't do it for cosmetic reasons for people too. It has made my day to know that someone else has been helped through this blog. That was my hope and prayer. I am sooo glad that Cassidy has her own blog! I will definitely take a look at it. :) I'd love to hear what you know about the link between Zinc deficiency and PE. I've never heard anything about that! Take care and I will continue to pray for your daughter and your whole family. Kristi Lori,
You guys have been through so much!!! Thank you so much for sharing all of this. That must have been so scary while her heart was “washing” and her lungs were trying to get used to everything. I am so so so glad that she is doing better! Oh, man, that is such great news!!
I am sooo glad you guys went to Dr. Harrell! I felt so hopeless before I saw him and I agree with everything you said about him. I also agree that I would never go through all I went through for cosmetic reasons. The risks and the pain are way too great. I’m glad that Dr. Harrell doesn’t do it for cosmetic reasons for people too.
It has made my day to know that someone else has been helped through this blog. That was my hope and prayer. I am sooo glad that Cassidy has her own blog! I will definitely take a look at it. :)
I’d love to hear what you know about the link between Zinc deficiency and PE. I’ve never heard anything about that!
Take care and I will continue to pray for your daughter and your whole family.
Kristi

]]> Comment on The Ravitch Procedure (Day 71, Ch. 2) by Lori http://pectusblog.com/2008/09/the-ravitch-procedure-day-71-ch-2/comment-page-1/#comment-9594 Lori Mon, 13 Jun 2011 15:35:39 +0000 http://pectusblog.com/?p=210#comment-9594 Sorry that I am just now getting back to you. As a matter of fact, I contacted Dr. Harrell the day I found your blog and he answered my email immediately. I learned more from speaking with him for 45 minutes that throughout the entire first repair. I saw your comment as I was sitting in my daughter's hospital room in Lubbock after her 2nd repair. Hers is a long story, but she has a website where you can read it in entirety. It is www.mypectus.webs.com. The 2nd repair was a great success, however, as with any surgery there are risks. Her left lung collapsed after surgery and her kidney levels began rising. There was also fluid in her lungs and around her lungs. It was minimal and most likely because the medicine to prevent "lung sweats" after thoracic surgery, she could not take with her kidney problems. Long story, but we left the hospital after 8 days thinking that any remaining fluid would be reabsorbed. We stayed in Lubbock for 2 more days where we continued to receive check ups from Dr. Harrell before we made the 7 hour drive home. We arrived home on May 14th and began running a fever on the 16th. On the 20th, bloodwork revealed that her platelets were 4 x normal and we headed to St. Francis childrens. The next day she had emergency surgery due to cardiac tamponade. Old blood had built up around the heart and lungs and was compressing the right ventricle. We will probably never have a clear answer as to why this happened, but the theory is that her heart was compressed even after the first repair (that repair gave her 5-6cm between sternum and spine and the 2nd gave her 10cm) so when the heart was finally free of the compression it began to try and "wash" itself because of the new and unfamaliar sensations. The lungs were doing the same, but because of the irritation of thoracic surgery. She was intubated and on a vent for three days and listed as critical for two. Both lungs were collapsed and she spent 3 1/2 days in ICU. She had a chest tube draining fluid from the pericardium and pleural area for 10 days. Currently she has had two excellent check ups and is feeling better than she has in months. The 2nd chest repair was so much better than the first! She had much less pain and could move easier the first week than she could in the first month after the first repair. I would recommend Dr. Harrell wholeheartedly. Dr. Harrell requested Cassidy's records and based his opinion strictly on the facts that he saw in her test results. I was very pleased with her care at St. Francis, also, but we were continually asked why we would travel to Lubbock for surgery instead of choosing someone there. My answer - we started at St. Francis and were told that PE cannot be the cause of her problems. No one ran the tests and at that time we didn't know what needed to be done. Dr. Harrell was professional and thorough. He told me upfront that unless her case was severe, he would not do a repair. Once he had her results, he was quick to get the information necessary to get her to surgery. I am sharing all of this to let you know that although the chest repair was successful, no surgery is without its risk. My daughter is blessed to have her life and neither of us would recommend a chest repair for cosmetic purposes. Kristi, thank you for sharing your story. I believe it was key in giving my daughter a normal life. She is now sharing her story in the hope that no one else will have to go through what she has been through. Also, last night we came across some interesting reading on the link between Zinc deficiency and PE. Sorry that I am just now getting back to you. As a matter of fact, I contacted Dr. Harrell the day I found your blog and he answered my email immediately. I learned more from speaking with him for 45 minutes that throughout the entire first repair. I saw your comment as I was sitting in my daughter’s hospital room in Lubbock after her 2nd repair. Hers is a long story, but she has a website where you can read it in entirety. It is http://www.mypectus.webs.com. The 2nd repair was a great success, however, as with any surgery there are risks. Her left lung collapsed after surgery and her kidney levels began rising. There was also fluid in her lungs and around her lungs. It was minimal and most likely because the medicine to prevent “lung sweats” after thoracic surgery, she could not take with her kidney problems. Long story, but we left the hospital after 8 days thinking that any remaining fluid would be reabsorbed. We stayed in Lubbock for 2 more days where we continued to receive check ups from Dr. Harrell before we made the 7 hour drive home. We arrived home on May 14th and began running a fever on the 16th. On the 20th, bloodwork revealed that her platelets were 4 x normal and we headed to St. Francis childrens. The next day she had emergency surgery due to cardiac tamponade. Old blood had built up around the heart and lungs and was compressing the right ventricle. We will probably never have a clear answer as to why this happened, but the theory is that her heart was compressed even after the first repair (that repair gave her 5-6cm between sternum and spine and the 2nd gave her 10cm) so when the heart was finally free of the compression it began to try and “wash” itself because of the new and unfamaliar sensations. The lungs were doing the same, but because of the irritation of thoracic surgery. She was intubated and on a vent for three days and listed as critical for two. Both lungs were collapsed and she spent 3 1/2 days in ICU. She had a chest tube draining fluid from the pericardium and pleural area for 10 days.
Currently she has had two excellent check ups and is feeling better than she has in months. The 2nd chest repair was so much better than the first! She had much less pain and could move easier the first week than she could in the first month after the first repair.
I would recommend Dr. Harrell wholeheartedly. Dr. Harrell requested Cassidy’s records and based his opinion strictly on the facts that he saw in her test results. I was very pleased with her care at St. Francis, also, but we were continually asked why we would travel to Lubbock for surgery instead of choosing someone there. My answer – we started at St. Francis and were told that PE cannot be the cause of her problems. No one ran the tests and at that time we didn’t know what needed to be done. Dr. Harrell was professional and thorough. He told me upfront that unless her case was severe, he would not do a repair. Once he had her results, he was quick to get the information necessary to get her to surgery. I am sharing all of this to let you know that although the chest repair was successful, no surgery is without its risk. My daughter is blessed to have her life and neither of us would recommend a chest repair for cosmetic purposes.
Kristi, thank you for sharing your story. I believe it was key in giving my daughter a normal life. She is now sharing her story in the hope that no one else will have to go through what she has been through.
Also, last night we came across some interesting reading on the link between Zinc deficiency and PE.

]]> Comment on Informational Video on Youtube by admin http://pectusblog.com/2009/11/informational-video-on-youtube/comment-page-1/#comment-9593 admin Fri, 13 May 2011 11:57:51 +0000 http://pectusblog.com/?p=420#comment-9593 Hi Tanya, Thanks for writing on here! I can definitely understand your concern. It is a hard decision. Is your daughter having any symptoms from her pectus? If it is simply cosmetic, I don't think I would go through either surgery. But if she's having symptoms, the benefit of having the surgery while she's still young is that her chest wall is not as solid as mine was at age 26 and so recovery should be faster. From personal experience, the Ravitch procedure was way less painful for me and a much quicker healing process. The difference is that with the Nuss the bar pushes out the chest wall and you have all the force or your chest trying to compress against the bar-- very painful! It's kind of like having braces on your teeth and them moving your teeth all in one day instead of gradually. I've heard younger people recover much quicker from this though because their chest wall is still more flexible. The pros is that this is a quicker surgery and less invasive. In my case the bar slipped out of place and my condition recurred. I've heard this is pretty rare, though. Other complications people have told me they had was being allergic to the metal in the bar. But I haven't heard as many complaints from younger people as I do from adults who have this done. The Ravitch on the other hand is a longer surgery, but they go in and take out the inside of the cartilage that links the ribs to the sternum. There are no nerves in the cartilage so the healing of this is not painful, plus by taking out the inside of the cartilage the pressure is off of the bar--much less painful. But this is a longer procedure, more invasive, and I've heard of a couple of cases where in younger patients the cartilage grows back wrong and the problem reaccurs. My doctor said he's never had that problem and he does the minimally invasive version. I've heard of this twice--on through reading a blog (I'll have to see if I can find that one again) and once on my blog. I wish I had a clear cut opinion for you. It really is a hard choice. Is there anything else you're wondering about with these? I can give you my doctor's info. Dr. James Harrell Ste 103, 3606 21st Street, Lubbock, TX 79410-1225 (806) 725-4425 ‎ As far as other parents go-- I'd have to e-mail a couple and see if they would mind getting in contact with you--would you mind me passing along your e-mail address to them? Let me know how I can help! Kristi Hi Tanya,

Thanks for writing on here! I can definitely understand your concern. It is a hard decision. Is your daughter having any symptoms from her pectus? If it is simply cosmetic, I don’t think I would go through either surgery. But if she’s having symptoms, the benefit of having the surgery while she’s still young is that her chest wall is not as solid as mine was at age 26 and so recovery should be faster.
From personal experience, the Ravitch procedure was way less painful for me and a much quicker healing process. The difference is that with the Nuss the bar pushes out the chest wall and you have all the force or your chest trying to compress against the bar– very painful! It’s kind of like having braces on your teeth and them moving your teeth all in one day instead of gradually. I’ve heard younger people recover much quicker from this though because their chest wall is still more flexible. The pros is that this is a quicker surgery and less invasive. In my case the bar slipped out of place and my condition recurred. I’ve heard this is pretty rare, though. Other complications people have told me they had was being allergic to the metal in the bar. But I haven’t heard as many complaints from younger people as I do from adults who have this done.
The Ravitch on the other hand is a longer surgery, but they go in and take out the inside of the cartilage that links the ribs to the sternum. There are no nerves in the cartilage so the healing of this is not painful, plus by taking out the inside of the cartilage the pressure is off of the bar–much less painful. But this is a longer procedure, more invasive, and I’ve heard of a couple of cases where in younger patients the cartilage grows back wrong and the problem reaccurs. My doctor said he’s never had that problem and he does the minimally invasive version. I’ve heard of this twice–on through reading a blog (I’ll have to see if I can find that one again) and once on my blog.
I wish I had a clear cut opinion for you. It really is a hard choice. Is there anything else you’re wondering about with these? I can give you my doctor’s info. Dr. James Harrell Ste 103, 3606 21st Street, Lubbock, TX 79410-1225 (806) 725-4425 ‎
As far as other parents go– I’d have to e-mail a couple and see if they would mind getting in contact with you–would you mind me passing along your e-mail address to them?
Let me know how I can help!
Kristi

]]> Comment on The Ravitch Procedure (Day 71, Ch. 2) by admin http://pectusblog.com/2008/09/the-ravitch-procedure-day-71-ch-2/comment-page-1/#comment-9592 admin Mon, 09 May 2011 20:17:10 +0000 http://pectusblog.com/?p=210#comment-9592 Lori, I am so sorry to hear about all you and your daughter have gone through the past 4 years or so! How discouraging for the doctors to say "her chest is a mess"! I have not experienced the passing out-- how scary--but I did have two Nuss procedures that failed and that doctor basically told me to just live with it even though the bar had moved out of place, I was in extreme pain, I couldn't move, and I was still on heavy meds! But he didn't think he could help me. I got a second opinion from Dr. James Harrell who did the Ravitch procedure on me. He is a thoracic surgeon. He does heart surgery on all ages as well as many other surgeries. He was confident he could help me even though this other doctor said there wasn't hope. Everything went exactly as he had described for me and I haven't had any problems since. I would recommend at least talking to him. I liked that he was familiar with the entire thoracic area (including all the organs) and not just the bones (like the other orthopedists I had seen). 3514 21st Street Lubbock, TX 79410 (806) 725-0237 I would love to hear what you find out and how things go! Take care, Kristi Lori,
I am so sorry to hear about all you and your daughter have gone through the past 4 years or so! How discouraging for the doctors to say “her chest is a mess”! I have not experienced the passing out– how scary–but I did have two Nuss procedures that failed and that doctor basically told me to just live with it even though the bar had moved out of place, I was in extreme pain, I couldn’t move, and I was still on heavy meds! But he didn’t think he could help me. I got a second opinion from Dr. James Harrell who did the Ravitch procedure on me. He is a thoracic surgeon. He does heart surgery on all ages as well as many other surgeries. He was confident he could help me even though this other doctor said there wasn’t hope. Everything went exactly as he had described for me and I haven’t had any problems since. I would recommend at least talking to him. I liked that he was familiar with the entire thoracic area (including all the organs) and not just the bones (like the other orthopedists I had seen).
3514 21st Street
Lubbock, TX 79410
(806) 725-0237
I would love to hear what you find out and how things go!
Take care,
Kristi

]]> Comment on The Ravitch Procedure (Day 71, Ch. 2) by Lori http://pectusblog.com/2008/09/the-ravitch-procedure-day-71-ch-2/comment-page-1/#comment-9591 Lori Fri, 25 Mar 2011 19:21:18 +0000 http://pectusblog.com/?p=210#comment-9591 My daughter had the modified Ravitch procedure on March 12, 2010 and had a fabulous year. Prior to surgery, we spent 4 years searching for answers. She was passing out sometimes 10-15 times a day, blood pressure extremely high then low and on and on. After surgery, every symptom that she had was gone. We had seen cardiologists, electrophysiologists and neurologists with no answers, but finally a cardiothoracic surgeon evaluated the pectus and found that her heart and lung function were severely compromised. The pectus was fixed and she steadily improved. Now one year later she began to have pain and the chest began to sink again. Our surgeon, who we really liked, is no longer practicing in the US, so we saw his replacement about a week ago and were told that one of the plates (she has eight screws and 2 titanium plates) in her chest was loose. He suggested that she live with it as long as she could stand it, because it is very invasive to fix and no guarantees that it won't happen again. Four days later she began to pass out again and we are starting over. The surgeon that we saw last has said that he doesn't feel qualified to take her as a patient because, "her chest is a mess." None of the doctors that we have seen think that her symptoms prior to surgery were related to her pectus. I don't understand how it couldn't be. Has anyone else had these problems? Apparently, the cartilage has grown back deformed and is pulling her chest back in. My daughter had the modified Ravitch procedure on March 12, 2010 and had a fabulous year. Prior to surgery, we spent 4 years searching for answers. She was passing out sometimes 10-15 times a day, blood pressure extremely high then low and on and on. After surgery, every symptom that she had was gone. We had seen cardiologists, electrophysiologists and neurologists with no answers, but finally a cardiothoracic surgeon evaluated the pectus and found that her heart and lung function were severely compromised. The pectus was fixed and she steadily improved. Now one year later she began to have pain and the chest began to sink again. Our surgeon, who we really liked, is no longer practicing in the US, so we saw his replacement about a week ago and were told that one of the plates (she has eight screws and 2 titanium plates) in her chest was loose. He suggested that she live with it as long as she could stand it, because it is very invasive to fix and no guarantees that it won’t happen again. Four days later she began to pass out again and we are starting over. The surgeon that we saw last has said that he doesn’t feel qualified to take her as a patient because, “her chest is a mess.” None of the doctors that we have seen think that her symptoms prior to surgery were related to her pectus. I don’t understand how it couldn’t be. Has anyone else had these problems? Apparently, the cartilage has grown back deformed and is pulling her chest back in.

]]> Comment on The Ravitch Procedure (Day 71, Ch. 2) by Tanya http://pectusblog.com/2008/09/the-ravitch-procedure-day-71-ch-2/comment-page-1/#comment-9590 Tanya Fri, 25 Feb 2011 06:42:44 +0000 http://pectusblog.com/?p=210#comment-9590 Hi, just out of curiosity, who was your doctor at UCLA? We saw a Dr. DeUgarte for my daughter and are still trying to decide between the Nuss and Ravitch procedure. He seemed to have done more of the Ravitch, but because of her age, we thought the Nuss would be less scarring and less invasive. Now we are unsure. any advice (she is 13 yrs old). Thanks <a href="#comment-9581" rel="nofollow">@ALB </a> Hi, just out of curiosity, who was your doctor at UCLA? We saw a Dr. DeUgarte for my daughter and are still trying to decide between the Nuss and Ravitch procedure. He seemed to have done more of the Ravitch, but because of her age, we thought the Nuss would be less scarring and less invasive. Now we are unsure. any advice (she is 13 yrs old). Thanks
@ALB

]]> Comment on Informational Video on Youtube by Tanya http://pectusblog.com/2009/11/informational-video-on-youtube/comment-page-1/#comment-9589 Tanya Sat, 19 Feb 2011 04:27:04 +0000 http://pectusblog.com/?p=420#comment-9589 Hi Kristi, I've been trying to do a little research and came across your blog. I have a 14 yr old daughter who is at that place in life where she feels self-conscience about her pectus and feels that surgery would be the best call. We have studied Ravitch and Nuss procedures and I thought that Nuss would be the best but am now not so sure (because of your blog). I have access to Loma Linda University or UCLA Hospitals thru our insurance. Are there any other places of research that you think I should be aware of and any recommendations for other connections/patients/parents that I can use in my search? I appreciate any help you can provide, I'm a parent with much skepticism and concern. Thank you. Tanya. Hi Kristi,
I’ve been trying to do a little research and came across your blog. I have a 14 yr old daughter who is at that place in life where she feels self-conscience about her pectus and feels that surgery would be the best call. We have studied Ravitch and Nuss procedures and I thought that Nuss would be the best but am now not so sure (because of your blog). I have access to Loma Linda University or UCLA Hospitals thru our insurance. Are there any other places of research that you think I should be aware of and any recommendations for other connections/patients/parents that I can use in my search? I appreciate any help you can provide, I’m a parent with much skepticism and concern. Thank you. Tanya.

]]> Comment on Some news (Day 67, Ch.2) by deb http://pectusblog.com/2008/09/some-news-day-67-ch2/comment-page-1/#comment-9587 deb Sat, 15 Jan 2011 20:47:17 +0000 http://pectusblog.com/?p=205#comment-9587 <a href="#comment-840" rel="nofollow">@Lindy </a> do you know any information in Dr Bliss and the nuss surgery? Titanium bars? two instead of 1? 6.1 index? etc @Lindy
do you know any information in Dr Bliss and the nuss surgery? Titanium bars? two instead of 1? 6.1 index? etc

]]> Comment on The Ravitch Procedure (Day 71, Ch. 2) by admin http://pectusblog.com/2008/09/the-ravitch-procedure-day-71-ch-2/comment-page-1/#comment-9586 admin Sun, 02 Jan 2011 04:37:31 +0000 http://pectusblog.com/?p=210#comment-9586 Maria, Thanks so much for writing on here! I am soooo glad that your son's surgery went so well. That is fabulous! I have heard great things about CHKD. I'd love to hear how things go as he heals. I would say that it would be wise to be careful over the next three months. Definitely stay moving because it's so easy to get weak, though. It sounds like his couldn't have gone better and that's awesome! I'll be thinking of you guys as he continues to heal. :) Kristi Maria,

Thanks so much for writing on here! I am soooo glad that your son’s surgery went so well. That is fabulous! I have heard great things about CHKD. I’d love to hear how things go as he heals.
I would say that it would be wise to be careful over the next three months. Definitely stay moving because it’s so easy to get weak, though. It sounds like his couldn’t have gone better and that’s awesome! I’ll be thinking of you guys as he continues to heal. :)
Kristi

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