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台灣漏斗胸(凹胸)病友協會

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台灣漏斗胸病友協會謹在此為病友服務, 讓漏斗胸的治療不再是困擾。歡迎病友投稿. 諮詢醫師: 朱志純教授, 林介文醫師 聯絡處:.台北市大安區忠孝東路四段77號12樓, 王小姐

部落格全站分類:醫療保健

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  • 1月 30 週一 201217:34
  • 恭喜Abby順利分娩

恭喜Abby順利產下龍兒,母子均安。
http://www.facebook.com/profile.php?id=100000680378954
國內已有多位女性病友手術後順利分娩, 與國外的經驗相近, 手術不會影響女性病友懷孕分娩
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Dr. 朱志純 發表在 痞客邦 留言(1) 人氣(64)

  • 個人分類:病友聯絡咨詢
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  • 1月 11 週三 201222:43
  • Pectus excavatum, funnel chest, sucken chest, a 29-year-old male---Revised on 2012/1/11

I’m writing this on the request of Dr. Chu, who was the surgeon who performed the Nuss Procedure surgery on me. Many of his patients have written down their experiences in Chinese, but none have been in English, so having a first-hand account in English would be useful for English speakers. Having spent the last few weeks with Dr. Chu, who I felt to be a caring, energetic doctor, I was happy to agree to the task.
CONTENTS
BACKGROUND 1
PRE-SURGERY 2
SURGERY 2
AFTER SURGERY 3
DAY 1 - ICU 3
DAY 2 – PAIN & PATIENCE 4
DAY 3 – SIT UP, STAND UP 4
DAY 4 – PRACTICE BREATHING 5
DAY 5 – PULLED OUT ALL TUBES 5
DAY 6 – WALKING 5
DAY 7 - LEFT THE HOSPITAL 5
DAY 8-14 – RECOVERY AT HOME 6
2 WEEKS – 6 WEEKS 6
6 WEEKS – 6 MONTHS 6
6+ MONTHS 7
CHINESE 7
BACKGROUND
Since I was born, I always had a “dent” in my chest. The dent was always about the size where my fist could fit into it without any difficulty. As a child, I remember making a game out of it. They would punch me in the chest, and we would pretend that they accidentally made a dent in my chest to the amazement of onlookers.
When I was around 12 years old, my parents asked me if I wanted to do an operation for my chest. At that time, the physician I was seeing said that it was mostly a cosmetic operation, and that I was physically more or less fine. Also the surgery seemed pretty major consisting of cutting open the chest. I thought about it, and being a bit more cautious and frugal, I decided against it. It seemed like not worth the risk or expense. I was quite healthy, athletic, and how often did I take off my shirt? Although I did feel a bit awkward taking off my shirt when swimming among strangers, especially when I was a teenager with the onset of hormones and peer pressure, I also felt that sufficiency was a virtue. I was quite content with what I had.
However, recently, at 29 years old, I began to have difficulty with physical activity and work. I felt like I could not keep up with those who were in their 50s.
PRE-SURGERY
I went through a series of tests at hospital: blood test, urine test, echocardiogram, CT scan of my chest area, electrocardiogram (EKG), breathing test, etc.
The tests showed that there were serious problems with my heart functions. The echocardiogram showed that there was a significant amount of pressure placed on the heart because of the dent in my chest. My pulmonary artery pressure was 38mmHg when my body was at rest, whereas the normal pressure should be around 10-20 rising to 30 if someone was running or exerting themselves heavily. At 38, my heart was working extra hard to pump blood throughout the body. The EKG test after I did about 5-10 minutes of light jogging showed that my heart had depleted oxygen, which is probably the reason for my fatigue doing physical activity. The results made it pretty clear to me that surgery was the best option.
The doctor also spoke to me a few times about the surgery itself, showing me pictures of others who had undergone the surgery, and played a video of the operation (which I must say looked really painful!). Video of operation from inside body: link, from the
outside: link.
He joked how the surgery was rather easy on the patient’s part because they just slept through it, and he was the one who had to do the work of the operation. It was said in good humor, and he said to trust him to do a good job. Given his broad, confident smile, and 400+ previous operations without failures (he actually was referred patients who had done other chest operations that had not worked out), I trusted I was in good hands. Still the night passed with a bit of anxiety. In my heart, I tried to call forth some courage and strength, “here we go...”
I was told not to eat past noon as the surgery was tomorrow morning, and I spent the night at the hospital.
SURGERY
The next morning, the nurse came and put in the intravenous line (IV). This was my first time getting surgery, so I must say I was pretty anxious. The anesthesia doctor came in and wheeled the bed to the operation room. It was actually kind of fun being pushed around in the hospital bed—a bit reminiscent of the childhood games in wagons or shopping carts.
Once I got to the operation room, there were around 5 people in the room. The anesthesia doctor put a needle in my back to apply the local anesthesia for my chest area. He touched different areas of my body asking if I felt any sensation, and I told him that I couldn’t feel anything in my chest area. Then, everything suddenly went black.
In what seemed like a few seconds, I woke up and was lying in the ICU (Intensive Care Unit) shaking. I was very cold, and I felt a strange pressure in my chest. The surgery was done, and there was a doctor there explaining to me what happened. There were three incisions on my body. Two were for inserting and “flipping” the metal rods that were going in behind my chest. And the other was for a camera to see what he was doing. There was also two marks around my sternum because he used a clamp to pull up my chest so that it would be easier to put in the metal rod without puncturing or damaging the heart as my heart was pressed quite tightly against my rib cage.
The doctor ended up putting 3 metal bars in my chest because of the depth and scope of my chest depression. He was initially just going to put in 2, but after putting in 2, my chest still had a bit of a depression. He then asked my father, who came into the surgery room, and decided that having another bar would be the best in terms of distributing the tension on my bones and for not having a depressed upper chest area. So, the doctor put in another metal bar. He secured them all on my rib cage and then sewed up the incisions.
Waking up after the surgery was a bit disconcerting. My shaking stopped after a few minutes, and although I felt a pressure in my chest, it was significantly less painful than I expected. I was far from comfortable, but the pain was manageable. I spent that night in ICU reciting a Buddhist mantra in my mind. It kept my mind focused on something so that it wouldn’t get pulled into doubts and negative thinking.
AFTER SURGERY
DAY 1 - ICU
In the morning, some of the hospital staff came in and took an X-ray of my chest and then wheeled me into the hospital room upstairs. The pain had slowly increased over the last 8 hours as the general anesthesia and pain killers used in the surgery were wearing off. It was still manageable though, but far from being pleasant. That day was probably one of the most difficult in terms of dealing with pain and immobility. I had never been hospitalized and bed-ridden before.
My dad ended up staying with me at the hospital taking care of me. I was pretty grateful for his support. He would use cotton swabs to allow me to drink some water, feed me through a straw when it was meal time, and help take off or put on blankets if I was cold or hot. I definitely felt a lot of gratitude for my father’s kindness. It was like being a little baby again. The kindness of parents is truly unfathomable!
DAY 2 – PAIN & PATIENCE
I was on a number of different painkillers including the epidural analgesia, a localized anesthesia, being administered at a slow regular rate into my chest area and a mix of morphine and other pain killers. However, often times the pain would be quite acute and I would find it a bit difficult to breathe and would ask the nurse to administer what they called “demo.” (It reminded me of “demolition”—either demolishing the body or the pain—probably both.)
The demo was injected directly into my shoulder and the effect could be felt after about 10 minutes where the pain diminished and my body relaxed. I didn’t feel too much change in my actual mental awareness as I was trying to stay mindful of what my mind was doing with all that was happening. Still, I was told that the demo was essentially morphine and highly addictive, so I should try to minimize its use if possible. They would only administer it in 4 hour intervals.
I had decided not to try to be heroic and bear the pain under all circumstances, but rather, stick with the middle. If I could keep my mind focused and be patient with the pain, I would do that, but if it felt that it began to get overwhelming, I would ask for a shot of demo.
I also had the experience of blood and “qi” flowing around my upper left area of my chest where my heart was. It felt like something got unstuck, like a hose getting unbent and everything was moving around. Although it was a bit uncomfortable, it felt like my body was returning to a more normal situation where my heart would have more space to pump. I also could feel my heart and lung trying to make sense of the new environment. It was a bit of a strange experience to have sensations from inside the body.
DAY 3 – SIT UP, STAND UP
The pain had become more manageable, but my back was beginning to feel very sore as I had been lying in bed for the last 60+ hours. I felt that my circulation was not very good and there was pain wherever the bones jutted out into the bed. It also was quite hot and humid underneath (partly due to the waterproof pad underneath my upper back), like I was being roasted on a hot plate. I asked my dad to help give me a massage on my back which helped a lot. Still after 30 minutes the pain would return and I would simply have to be patient with it.
Then, in the late afternoon, Dr. Chu came and took a look at my condition. He thought I was recovering quite well and helped me sit up without the support of the electric bed. That was quite an experience of trusting his strength and knowing what he was doing as I was told just to relax as he picked me up. I then sat on the edge of the bed and after getting acclimated to the new position (namely, my heart had to adjust to pumping blood to my head in a sitting posture against gravity whereas before it was used to pumping blood more easily while I was lying down), he helped me stand up. Again, that took a bit of trust. After that I was pretty exhausted, and I rested for the rest of the day.
Also, the painkiller was changed from morphine to Ketorola (“Keto” for short) as it did not have an addicting quality. The effect of Keto was not as fast, but it did help relax my muscles and reduce the pain when it became a bit too much.
DAY 4 – PRACTICE BREATHING
The pain decreased a bit and I was feeling a bit stronger. I was able to sit up occasionally throughout the day and was also given a breathing device with three balls in it to practice deep breathing. I practiced occasionally as the doctor recommended that I do not do it for too long periods of time until I was stronger.
My digestion improved and I was able to eat more solid food and had a better appetite. I also had my first experience using a bedpan. What goes in has to come out... so it seemed like my digestive tract was working all right.
DAY 5 – PULLED OUT ALL TUBES
On this day, Dr. Chu came and pulled out all the tubes in my body.
The catheter used for urination, the epidural used for localized anesthesia, and the IV that was going into my veins. He then helped me sit up, and then stand up, and was considering helping me walk, but I declined feeling quite a bit shaky still.
DAY 6 – WALKING
I felt a lot stronger and was able to get up and walk a tiny bit.
This was quite an experience given that I’ve been in bed for the last five days. The doctor said that I probably could go home tomorrow or the day after depending on how I felt.
DAY 7 - LEFT THE HOSPITAL
Feeling quite a bit stronger, Dad and I decided to return home from the hospital as I no longer needed to be hooked up to the machine and could walk around on my own. However, I still needed my dad to help me get out of the electric bed, put on clothing, use the bathroom, etc. But, I didn’t need any of the hospital services anymore.
As the room needed to be vacated before 12pm for cleaning, my dad and I left in the morning for home. The car ride was rather bumpy and painful. Upon arriving back home, I was quite exhausted and needed to lie down to recover. My dad had ordered an electric bed which was extremely helpful for being able to lay down in a gentle and smooth manner that did not twist and disturb my chest.
DAY 8-14 – RECOVERY AT HOME
Day 8 was significantly better than Day 7 (in fact, it probably would have been easier to have left the hospital on Day 8 as it was quite exhausting leaving the hospital on Day 7).
Day by day, I got stronger. And around the 10th day or so was able to get out of bed on my own after sitting up with the electric bed. I still needed my dad’s help for some basic functions, but I could be much more independent at this point. In general, I could get up, do some work on the computer for about an hour or so, and then I would need to rest again. The length of time I could stay up without needing to rest increased day by day.
2 WEEKS – 6 WEEKS
Day 15. I went back to see the doctor and he was quite happy with the results and my recovery. He had an x-ray done on my chest and the bars were in their proper locations. He told me to practice breathing by breathing in fully and then exhaling through parsed lips. This would help my lungs’ alveoli get stronger. At this point, I can walk around on my own pretty easily for short periods of time. I can also work for 2-3 hours at a stretch before needing to rest.
Day 21. I’m recovering quite well and am able to walk around on my own and take care of myself more or less. As an experiment, I tried getting out of bed without the help of the electric bed by using a bedsheet that was tucked in under the mattress. It was a bit uncomfortable, but I was able to get up. However, as my dad rented the electric bed for a month, I still think it is a lot easier with the bed.
Also, there is a sharp, needle-like pain on the left side of my upper torso where the scar is when I lie down. When walking and sitting upright, the sensation goes away. I asked Dr. Chu, and he said having some pain for the first two months after the operation is very normal. I should be concerned if there is inflammation or the contour of my chest changes. Another opportunity to practice patience.
6 WEEKS – 6 MONTHS
Day 30. I felt a lot stronger and went for a two-hour hike in the mountains. However, once I got back, I was quite tired and slept for quite awhile. In the early morning, I felt more pain in my chest than usual. Maybe overdid the exercise a little bit. I was a bit sensitive throughout the day, but by evening, it was not really a problem.
Day 50. Much better. I went on a relatively long road trip to visit a school and monastery without any difficulty. I am able to go on long walks without much problem, and I feel like my energy has returned. Using strength with my upper body is still difficult. Doctor says not to lift heavy objects. I can get out of the bed now on my own pretty easily if I hook my foot under the bed for leverage and then use my other hand to grab my foot and swing myself up to a sitting position.
6+ MONTHS
[I should be able to do most physical activities, but should still be careful about my chest and not dislodge the bars.]
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  • 個人分類:病友心聲分享
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  • 1月 07 週六 201216:08
  • 保險顧問--病友朱聖鴻義務咨訊



 
病友朱聖鴻在手術後加入了保險業, 也願意為病友們以專業及經驗為其他病友們解答及咨詢相關保險理賠的問題.   聯絡方式, 留言或EMAIL msnlineage@hotmail.com
或facebook朱聖鴻
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  • 個人分類:保險理賠
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  • 1月 01 週日 201221:25
  • 漏斗胸的嚴重程度---凹陷指數Haller index 怎麼算出來的?



漏斗胸凹陷的嚴重程度在以前有許多不同的測量方法, 如躺下時在胸前凹陷處注水, 看能容納多少毫升的水, 作為凹陷指數; 在1987年, Dr. Haller, Dr. Kramer, and Dr. Lietman等人發表了以胸部電腦層檢測胸腔內橫徑除以胸骨至脊柱的距離來表示漏斗胸凹陷的嚴重程度.如下圖, Haller index =D/B, 正常在2.5左右 當大於3.25 就已是有嚴重壓迫了; 當然, 這種方式廣為醫界所認同, 但以現在的水準來看, 卻顯得太粗糙.  尤其是定Haller index >3.25為手術與否的界線, 早已不合宜. 且只適用在對稱型的1A 及1B型作簡單粗略的評估, 對不對稱及併有脊柱側曲者, 就不適用了(如下圖)
對除了外觀及心理上的影響外, 最重要的手術適應症, 則是心臟及肺臟在壓迫下, 功能受了多大的影響, 才是最重要的.
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  • 個人分類:漏斗胸知識
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  • 12月 29 週四 201119:07
  • 最困難的矯治-大峽谷型的凹胸



多年前曾與Dr. Park討論, 他認為最不容易治療的胸廓凹陷常就是分類2A3型大峽谷型的凹胸; 因兩側極不對稱, 胸骨歪斜, 肋軟骨鈣化嚴重, 彈性差等等, 和波蘭症候群等及混合型等一般, 讓許多大師級的醫師都感到棘手. , 以傳統手術, 幾乎沒法有樂觀的治療效果, 幸而, 納氏手術留給醫師很大的發揮空間,在仔細規劃及經驗改進後, 這類型的凹陷, 用到二或三條矯正板及固定片的結合設計, 仍有很好的治療效果.
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  • 個人分類:漏斗胸知識
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  • 12月 22 週四 201111:18
  • 2011/12/18--陳姐姐和小朋友們說故事活動



http://www.wretch.cc/blog/evai1210w/12179834
【說故事】在宏恩醫院為孩子說故事

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  • 個人分類:漏斗胸之友協會活動
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  • 12月 21 週三 201122:07
  • 恭喜緯倫與佩怡



佩怡來門診, 送我一幅婚紗照, 經她同意, 與大家分享她倆的幸福, 有情人終成眷屬. 緯倫的細心照顧真值得!
 
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  • 個人分類:病友聯絡咨詢
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  • 12月 18 週日 201122:40
  • 阿祥分享之二____術後烣復

阿祥術後恢復狀況
小孩的復原能力真的很強
出院後的第一週比較辛苦
阿祥起床或躺下的瞬間都要媽媽幫忙,情緒上也比較撒嬌像個小baby似的
食慾依然很差
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  • 個人分類:病友心聲分享
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  • 12月 17 週六 201121:26
  • 29歲的工程師開刀經歷


一直以來呼吸總是覺得沒辦法吸飽氣 做體能測驗時總是覺得呼吸喘不過來 胸形跟別人不太一樣 被家人說站立的姿勢總是駝背 直到兵役身體檢查時才知道有漏斗胸這種疾病
我和家裡的人都不知道有這種病的存在 那時診斷的醫生說如果要做矯正的話就要把前面的骨頭弄斷再翻轉 因為我個人很怕痛 聽到這個我和家人都嚇到了 所以矯正手術的事情一直就沒再被提起
當時醫生只說如果覺得自己平常呼吸還可以的話就靠多做擴胸運動來增加肺活量 但是之後發現呼吸不順暢且有越來越嚴重的感覺
正在煩惱要不要去動那種手術時我在網路上找到了朱醫師的漏斗胸之友協會 也得知還有新的納式手術可以做矯正 於是一年前在中山醫院經由朱醫師的診斷 同時發現自己心臟有被壓迫到 朱醫師當時建議要開刀 回家後雖然看了很多病友的心得 但是因為心裡還是會害怕 加上手術經費也是一筆不小的費用 於是又多猶豫了一年的時間 後來在公司願意讓我請長假的機會下 終於在今年10月份下定決心去開刀
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  • 個人分類:病友心聲分享
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  • 12月 10 週六 201123:09
  • 4歲半 阿祥手術分享

在分享手術經過之前媽咪首先要感 謝朱 醫師及中山醫院的醫療團隊
感 謝朱 醫師手術之精湛讓小兒的痛苦指數趨近於零而且恢復神速.
中山醫院的醫療團隊非常專業而且窩心真的想豎起拇指說”讚”!
再來要感謝部落格上病友的經驗分享
因為你們的分享讓媽咪對手術安心不少
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台灣漏斗胸(凹胸)病友協會

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