| Author | Message | ||
     Mwhalliday Username: Mwhalliday Registered: 02-2007 |
Does anyone know any information or possibly had this surgery? Our son, who is 10, is planning on having this surgery because still is having syncope while on highest dose of beta blockers. Please let me know if anyone knows anything, this is just to scary! | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
I have no personal knowledge of this surgery. I only read about it and know that it is not performed often, but that a new procedure makes it easier. Here is the best article I found about it. Just click on "full text" when you get to the webpage. Best wishes to your son! http://www.jpgmonline.com/searchresult.asp?search=sympathetic+ganglionectomy+for +long+qt&author=&journal=Y&but_search=++Go++&entries=10&pg=1&s=0 | ||
| Mwhalliday Username: Mwhalliday Registered: 02-2007 |
thanks for the article, I have read so much about this surgery but always helps when other people have had it or know about it. Thanks again, thats an article that I have not read! Surgery is on Tues. so I will let everyone know, this is a great website, I only wish it was more used, I enjoy talking to people with the same issues. | ||
| Orbflanker Username: Orbflanker Registered: 02-2007 |
My 16 year old daughter has been given a preliminary diagnosis of long QT after having had a seizure in the pool at swim practice. We were very lucky that she suffered no injury in the incident. She had every cardiological test under the sun including a stress test EKG. Everything was normal until they did an "epinephrine challenge" which was borderline abnormal. I am confused about the reliability of this test especially when juxtaposed to the normal stress test EKG. Has anyone had any experience with the two tests especially when they apparently contradict each other? Thank you. | ||
| Diane Username: Diane Registered: 11-2006 |
Hi, Glad to hear that your daughter is doing fine. My 3 kids aged 9, 18, 19 have just been diagnosed as borderline as well. I think that the epinephrine challenge is a pretty reliable test for some forms of LQTS. My 19 year old had a cardiac arrest while running but his stress test ecg was almost normal. He is going to have a stress echo and an epinephrine challenge done as well. My kids are on treatment in the mean time. Hope you find some answers soon. Diane | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
To orbflanker, Borderline people are very difficult to diagnose. When it comes to LQTS, if there is any suspicion, you cannot rely on a regular EKG. As you can read in the following article, http://www.mayoclinic.org/news2006-rst/3324.html a regular EKG does not always show a problem, this is why they have developped the epinephrine test. If you still have any doubt, you could have your daughter genetically tested. My daughter is borderline and was confirmed after genetic testing as having LQT2 like me. Swimming is one of the worst triggers for LQT. Did the doctor put her on betablockers as a precaution? I hope you find your answer. Best wishes! | ||
| Orbflanker Username: Orbflanker Registered: 02-2007 |
Yes, she's on beta blockers. Thanks for the link. I've seen some literature that says the Epinephrine test is experimental and even some that consider the "stress test" EKG more reliable. Thats what I'm confused about. My daughter's stress test EKG was normal. Thanks again. | ||
| Joyce Williams Username: Joyce_williams Registered: 08-2006 |
Hi Bionic, just want to say to you that you are still there for people,you give people links for more Info. This site did become redundant for a while, but you still battle on to try to help, I admire you so much for that! AND... you always express thhat you are not a Medic, just someone that has this this Long QT syndrome. I look in now and again on this site, and have read what you have posted, stay there Bionic.. you just give people help where to go. But..may I ask you one question? Like me (as you know from my posts) you and me are similar age? yes.Im 50 now..and have Long qt 2 ..like you..Im starting to ask if I need the defib? It's just on reading so much now, that the crucial time is when you are younger? OK yes I do have feelings despite the device being there,,but..Im thinking that maybe as we get older we become safer? On what I read the answer is yes? Sorry im asking you the impossible! But...I would appreciate your opinion on this. Take Care Bionic x(X) Joyce (Dean) | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hello Joyce, I really appreciate your kind words, thank you very much. To answer your question, I am a bit older than you. I am 62 and was diagnosed at 47. I have had four ICD's so far. The first one gave me two shocks because of a fractured lead. I never needed the second one, but with the 3rd one, I had about fifteen shocks all together, twelve of them being within a few weeks and all appropriate (meaning they were due to heart problems, not device failure or malfunction). That was 3 years ago, when I was 59. Like you, I was under the impression that as you grow older, the QT somehow shortens, but evidently, this did not work for me. The doctors were very surprised, but I think there is still much to be learned about LQTS. My first dctor had told me that there was no telling when I could have an episode. I remember him saying I could be fine for 10 years, and then, out of the blue, have several episodes in a row. Of course, you have to know your triggers and avoid them. For me, noises at night, stress and emotions have been the main culprits. Because the unpredictability of LQTS and the number of episodes I have had, I certainly would not dare be without my ICD. I am here because of it. Of course, every one is different, so no one can predict whether you will ever have an episode, but for me, it is like an insurance for the car: I hope I never need it, but I am glad I have it. The price to pay is too expensive. I have been trying to find the answer to the question about the evolution of the disease, but I have not found any info yet. I will let you know if I discover anything. Have you had any episodes since you have had your ICD? I know that doctors are very reluctant to remove them once they are in, because no one can predict the future. You may have it for ever and never use it, yet... Take care and stay well! | ||
| Joyce Williams Username: Joyce_williams Registered: 08-2006 |
Hi Bionic, Thanks for the reply. Up to now I havent needed shock therapy..but was shocked 4 times cos the ICD double read my heart beats! that was a year ago..not a nice feeling. In your case its a definate yes that you need the ICD, its just some things ive read about Long QT that sometimes age can shorten it,its a mine field because no one can predict i suppose. Hopefully more future research will come up with something. Its just personal to me that I hate the device for what it stands for..my..our loss. But..I hasten to add had an ICD been offered to my son there would have been no hesitation to have it implanted. Thanks again Bionic,,keep up the excellent support you offer to people. Takecare and you stay well too. Joyce x | ||
| Bionic Roadrunner Username: Bionic_roadrunner Registered: 08-2006 |
Hi again, Joyce! Here is an article that mentions that the length of the QT could shorten with age, but they cannot tell whose QT that might be... http://www.pedicard.org/images/files/b3_file16_19292.pdf I understand your dislike for the defibrillator. I know it is a constant reminder... Hang in there, my friend! |