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I know this might be a weird thought, but from my research, one of the main symptoms of having PE was poor circulation. I suffer from all he other ones, despite mine being "minor" in diagnosis. And when one has poor circulation, it causes less blood to go to the brain, in turn causing short term memory loss and difficulties retaining information.
I wanted to ask anyone who had lived with PE for a long time before getting their Nuss done, did you find improvements to your cognitive abilities after your procedure once your circulation got better?
Hvala flekic još jednom, i ja se nadam da će ići nabolje, samo je i sam oporavak teži uz pomenutu temperaturu, ali doći će sve na svoje posle izvesnog vremena
And another question regarding the fever: Could it possibly be that I am somehow allergic to the nuss bar, because I was not tested for metal allergies and I forgot to ask my doctor whether he used the stainless steel bar or the titanium one? What would be the common symptoms for that kind of allergy?
Would appreciate any kind of answer since both my parents and myself are worried sick.
He missed the on-q nerve block bags when we got home! The first 4 days at home he complained of a burning sensation -- As if someone had a blowtorch burning their way from the inside of his chest out. He was on narcotic & muscle relaxer 6 days but then went to ibuprofin & muscle relaxer then to ibuprofin only. It seems to be a process of healing, doing some new activity, hurting, then healing and starting the cycle again. I keep a written journal of his meds because I knew I'd never remember what I gave him and when... especially when we were trying to extend the time between meds from 3 hrs (hospital) to 4 hrs (home) to 6 hrs now. Best wishes for your son's recovery!
My son had the Nuss procedure performed on Tuesday (6/20). He did wonderfully at the hospital, up walking around with minimal pain. He was released yesteday and has been in much more pain at home. He has a hard time with the pain while standing and I had to place 2 chairs on the route to the bathroom (which is maybe 35-40 feet) so that he can stop in between on the way to the bathroom. Can others who have had this surgery please let me know how it was for you? Is this normal? How long will this last? Thank you.
i ja sam imao modricu sa levevstrane i nestala je posle par dana i to je bila u precniki 0.5 cm i posle dva meseca mi se tu gde je bila masnica pojavila crvena tacka koja je posle prerasla u fleku 5cmprecnika nesto kao popucali kapilari i tako mi je vec par meseci malo se povuce pa se vrati u punom intenzitetu i evo sad hvala bogu je maltene potpuno nestala ja sam sad 5 meseci od operacije,treba telo da se prilagodi na sipke,ja imam 2 sipke i 2 stabilizatora i mogu ti reci da mi je bar jedno 3-4 meseca trebalo da mogu da se cratim kolko tolko normalnim aktivnostima,svaki dan ce ti biti bolje ali malo po malo,ipak je ovo brutalna operacija koja ti izmeni skelet i telu treba vremena da se prilagodi na novo nastalu situaciju,imaces teskih trenutaka ali na kraju ce sve biti kako treba najgore si prosao na tvoju nesrecu po drugi put,a i ovo vreme je nenormalno vruce pa nije ni cudo sto ti je povisena temperatura drzi se samo pozitivno i sve ce doci na svoje
"pectus martyrs" is the right term... :-/
good luck with the rest of the recovery!
Is your PE severe? what is your Haller Index? If not too severe, perhaps try the vacuum bell first. 20 years old is a bit old for the bell but perhaps not too old. It is worth a try. Even if it does not fully correct the situation it might improve it so that you don't need surgery.
There is a big question mark with Nuss, and it is pain that may stay for months, years or even a life time. It is not the vast majority of cases fortunately, but ending up taking opiates every day for the rest of your life is no picnic. There are a lot of young men and women who had their life ruined because of this surgery. My advice would be to objectively assess your lung and heart situation. If the problem is the way the dent looks, nowadays fat transfer is a technique that is well known with good results and obviously without the major risks of Nuss.
I had a Haller of 12.4 and I was nussed 9 months ago. If I could turn the clock back to my 20th birthday, I would try the bell first even if it takes 2 years. There is nothing to lose. This is major surgery, don't underestimate this.
Perhaps what you need is some voice training now that your PE is fixed. Voice has a lot to do with the way you use your muscles in your chest and throat. I would definitely see a physiotherapist to find the "right" way to use your muscles with your new rib cage.
It's reassuring to read there is a solution for you. I'm glad for you and I wish you the best of luck!
I'm afraid it is up to each patient to contact a surgeon abroad. When I searched for my own case I made a list of the top surgeons with relevant experience on 40+ years old and very severe PE: Dr Jarozsewsky in the US, Prof Schaarschmidt in Germany, Dr Pilegaard in Danemark, Dr LUtzenberg in Germany and Dr Park in Korea. But if you are young with a relatively mild and symetrical PE, there are probBly many surgeons who can help you. On this website there is a page of surgeons per country. You may find someone who can help.
In my opinion the UK is probably the less advanced country for PE with many botched repairs. The US has the best surgeons for PE. Depending on the severity of your case and age the vacuum bell might be an option if the Nuss procedure seems too daunting.
Yes it is true PE symptoms get worse with age. Firstly the cartilage around the sternum become stiffer which means the whole rib cage loses its flexibility making the constrain on the lungs and heart worse. Secondly as people age they tend to become shorter especially women. The loss of height is located in the torso with vertebras close to each other. This reduces the lung volume, which in PE patients make the situation worse.
There was a study in the Netherlands about senior PE patients who had an "unexplained cardiopulmonary syndrome". After a Ravitch they all got substantially better. And most had a Haller of only 4.5 or 5.
Hvala flekic na odgovoru.
Doktor je temperaturu uglavnom pripisao tom izlivu i modricama od posle operacije, medjutim, kada je izliv nestao i kada su modrice pocele da se povlace, temperatura je i dalje ostala. Videcu jos koji dan pa cu zatraziti detaljnije analize, cisto da mogu normalnije da funkcionisem. Uglavnom, i ja se nadam da ce oporavak odsad ici brze.
Nadam se da si ti bolje nego ja sto sam, pozdrav
How was his pain once he came home. My son had the procedure Tuesday and was doing great at the hospital. They released us today and since we have been home his pain has gotten worse.
cao djoni i ja sam imao cudnu temperaturu posle operacije 37,5 kojstantno pa i vise neki put a ujutru kad se probudim 35,5 mislim da je to normalno ipak je telo pretepelo prilicnu traumu i treba mu vremena da se oporavi od svega toga.verovatno nije nista ali ako se nastavi jos nekoliko dana pozovi dokrora koji te je operisao pa vidi sa njim ne znam tacno kolko je to meni trajalo samo sam prestao da merim temperaturu , a i anemiju sam berovatno imao jer sam bio bled ko krpa nisu mi nista dojagnostikovali jedes malo cvekle i ko nov zelim ti brz oporavak pozdrav
You will find a lot of stories and experiences about people the nuss procedure in this forum. positive and negative ones. just read some of the threads.
150 procedures is a decent amount. there are surgeons with a lot more experience. did you ask him how many surgeries he performed on adults?
And yes it does stay that way while the sternum is out.
My progress was very slow and speratic. When I was using it I was very focused on the chest alone like most people trying to get rid of pectus excavation. My advice would be so see the whole body. If your pectus is very severe and you want it totally flat I would suggest surgery. If you just want to improve your look then I would suggest exercise and the vacuum bell if you want. And I wouldn't try to totally fix your pectus I would just use the bell to improve it. There are plenty of people with pectus that have much better looking body's then people who don't have it at all. I don't have progress pics but I will say the longer you use the bell as in days in a row etc the longer it takes for your sternum to sink all the way back in. And I would chart your results and pay attention to your body and maybe have a doctor supervise it. Remember there isn't any information on the web that can help you with your progress while using the bell. Hope this helps. Any other questions you have ask away!
Thank you PectusChris for your helpful message here. It's really nice to get to know fellow VB users, as most people opt for surgery. I'm in the process of ordering my VB and hope this this one will fit me well and be able to pull out my sternum,
I've read one of your old posts saying the VB changes your bone structure. I'd imagine it's your upper chest and shoulder area? And does this change stay while your sternum is still out? Or does it revert once you remove your VB?
How long have you been using your VB? Could you please describe your improvement?
I had pe and a very quiet voice which was fixed if I used a vacuum bell twice a day for at least 5 days. However now I've had the nuss I can't use the vacuum bell and my voice has reverted to being very quiet. The vacuum bell fixed the voice by pulling out the upper chest, wheras the single nuss bar is in the lower chest. By nuss bar is due for removal. Any ideas on how to proceed to get my voice fixed? (my nuss surgeon isn't interested in voice issues)
Hi there all,
I'd first like to thank you all for this forum, it has helped me a lot.
Back to my problem: I am now 37 days post modified nuss procedure which was actually a redo, because I had a ravitch in 2012 but that didn't help my problem a lot since only one of my deformities was treated (I have a mixture of PC and PE) and the surgery itself provided poor esthetic results.
After the second surgery I was diagnosed with minor pleural effusion which was, as my doctor told me, the main reason I had relatively high body temperature (38.6 degrees Celsius, i.e. 101.5 degrees Fahrenheit). The therapy was the antibiotic ciprocinal two times a day for a week. The body temperature went down really fast to an average of 37.3 degrees Celsius/99.14 degrees Fahrenheit. Since I was not very mobile, the effusion didn't go away that fast, but fortunately it did. Since then, every now and there I get the temperature of about 37.8 degrees Celsius/100 Fahrenheit. So I wanted to ask if anyone of you may know what the problem can be?
Also, I was diagnosed with anemia 3 weeks after the surgery, but the other doctor (gastroenterologist and hematologist) told me this is common after a big blood loss and that I should just eat healthy and recover from surgery and prescribed me iron supplement.
More info: I have one bar in, stabilizers on both sides and my doctor also made a big vertical incision across my chest to align the sternum with the ribs the best he can. I don't really have any other problems, slight pain on my sides where the stabilizers are I think is considered to be relatively normal. Also, I still have bruises where he used to remove the excessive cartilage but they are fading away slowly as I treat them with a cream he told me to use. Besides that, I am 23 years old student from Serbia.
Sorry for the long post and cheers to all you (former) pectus martyrs
Hi, Mason. What are the symptoms you're referring to? Any related to heart / cardiopulmonary?
The most stressful decision of my life.
Just saw a surgeon in Canada and spoke with him, didn't really learn much as I have been doing research for years.
I'm 20 yrs old male with PE and have always been looking at getting the Nuss. My parents are %100 against it as it is for cosmetic purposes.
I know the risks but even knowing that death and infection are low risks factors I'm really scared, But a future without PE is something I dream about.
I'm not looking for encouragement, I'm looking for wisdom and stories that can help me make this critical decision.
Thank You So much, June
My PE is symmetrical
the surgeon says he has performed around 150 Nuss procedures
I would most likely be getting 2 bars
they claim to use epidural but forgot to ask if there are other pain options
After a lot of consideration, including seriously thinking about not having any further surgery, I have decided to move forward with Dr. Lutzenberg. I had several phone calls with him and visited him in early June and felt instantly comfortable with him. I got a sense that he was highly experienced and did consider the patient holistically, as Anna suggests.
We had a good discussion about what was possible in the surgery as well as any potential complications. I know that Schaar is a good surgeon, but in the end, I was concerned that there would be potentially too many risks with his approach (potentially a great outcome but I am not willing to accept any more complications).
So, Dr. Lutzenberg ordered a new CT scan and found that there is scar and bone overgrowth in intercostal spaces 5+6 as well as compression of the intercostal nerves (that explains a lot of the discomfort and pain). The CT also visibly shows the dent on ribs 6 and 7 and a deformation of the 5th rib attaching to the sternum, all a result of my first nuss. He recommends a modified ravitch, which will require a new incision in the midline of my chest. I have a hairy chest so not too worried. Luckily, it doesn't appear I will need new bars, but given my bars were only in 18 months, I am experiencing some regression and we will revisit this on the day of the operation.
One of my major complaints has always been my rib flare on the right side of my chest, which has been increasingly painful since I was a teenager. This was not addressed by Kolvekar in the first operation. Dr. Lutzenberg diagnosed this as slipping rib cartilage syndrome and will also be able to correct it, requiring a new small incision.
The major difference with what Schaar was proposing to do and what Dr. Lutzenberg will do is the new incisions. Schaar had suggested he would use the existing incisions (potentially lengthening a bit) to reach all the areas that would require modifications. In doing so, he would have had to move through a lot of muscle. Although we never discussed it, there is potential for complication in doing this and was one of my major concerns. Dr. Lutzenberg, will make new incisions, the downside being additional scars, but the potential for muscle and nerve damage is substantially reduced. Equally, he will not enter the chest wall itself, which will further reduce the chance of complications.
So, I am very hopeful that this procedure will result in significant improvement. I know the result will never be 100% but I feel like I am in good hands with Dr. Lutzenberg. Will keep you posted following surgery.
Just a update, so i had my doctors appointment about the spiro test and my x-ray both coming back as fine in the doctors eyes. I once again explained to her that i wanted the Nuss Procedure and that the pain in my chest cannot just be 'fine' i told her that i wanted to be referred to a surgeon that specialised in the Nuss procedure and she told me that she is going to get in contact with a Mr. K. Papagiannopoulos in Leeds and see about a referral but in the meantime she would like me to do a echo as she think i may have morfans syndrome (no possible as i was a soldier and have been checked numerous times)
Nice to be on here. Thank you Pectus.Com for this site! Please read my profile bio to learn more about me.
For this post: I've noticed there aren't a lot of posts about the cardiac symptoms of PE. Is there anyone on here that has more heart problems than aesthetic problems with PE?
- severe shortness of breath with minimal exertion (aerobic or strength)
- shortness of breath lying on either side or flat on my back. even leaning over to pick something up or tie my shoes
- several different arrhythmias (a-fib/svt/pvc/1st-2nd degree heart block) even sedentary and unprovoked
- heat intolerance
- emotional intolerance (good or bad)
- physical positioning/movement
- pretty much anything requiring cardiac stimulation
Thanks a lot!