Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi Debbi- Thank you sooooo much for your message. Just wanted to let you know we have an appointment with Dr Pelligrini in Seattle, Washington on the 18th and surgery scheduled for the 19th. Yes, I am terrified but your message helps re-assure me that we are doing the right thing. My daughter is just 14 years old and the thought of surgery really scares me. Keep us in your prayers! Suzi > Hi Suzi -- > > I tried accupuncture for about six weeks back when I was first diagnosed. I didn't notice any changes in my swallowing function, but I sure did find the procedure itself to be very relaxing. I would come out feeling that sense of calmness that you feel after getting a massage. > > I don't think it would hurt to give it a try. It didn't work for me, but you never know if it will work for someone else. > > I'm glad you've gotten an appt. in Washington. Talk to the doctor about your fears of surgery and ask all the " what ifs " that you can think of. A good surgeon will be willing to answer all of your questions. > > My own personal opinion on this is that your daughter is going to be LESS damaged if she has the surgery. With a dilated esophagus, she's going to have decaying food sitting there for days and days, plus an increased risk of aspirating food/saliva when she's sleeping. And her esophagus is going to dilate more and more and more as time goes on. I've never heard of one single person whose condition got better " all by itself " without some form of treatment. > > I haven't seen anyone on the group who has gotten LONG TERM relief from non-surgical procedures. There are several people who have posted to this group that they had surgery over 20 years ago..... but I've not seen one person post here in the time I've been a member that they had a dilation 20 years ago and that it's still working. (If I'm wrong, someone please correct me on this one.) > > I have seen several studies that put the " success rate " of surgery over 90% (when performed by an experienced surgeon) with " success " meaning a considerable improvement in swallowing function. NOTHING is going to be able to bring an achalasian's esophagus back to 100% (unless they perfect the " pacemaker " technique in the future, but that's still a long way off.) > > In my own case, I've had a couple of dilations (second one helped a lot) and one Botox (didn't do a darn bit of good) and now I'm just waiting for my symptoms to progress enough that I qualify for surgery. I wish I'd known back in 1996 what I know now about dilation and Botox -- I would have just had the surgery and been done with it. Yes, I did get a few good years out of my second dilation, but now I'm faced with my symptoms worsening again and my only recourse is surgery (they won't do repeated dilations b/c there's an increased risk of perforation with each subsequent dilation.) The way I look at it, if I'm gonna have to end up having surgery ANYWAY, I'd have been better off having it in the FIRST place instead of wasting all this time and money on dilations, botox, testing, etc. Now I'm the mother of a preschooler and my husband travels and I have no family in the area to help out -- having surgery at this point in my life is much more complicated than it would have been back when I was single with no kids. > > Please keep us posted of when your appt is in Washington -- we'll keep you and your daughter in our prayers! > > Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi Debbi-Thank you sooooo much for your message. I'm so glad to have been able to offer you some support! ) Just wanted to let you know we have an appointment with Dr Pelligrini in Seattle, Washington on the 18th and surgery scheduled for the 19th. Wow, it's coming up REAL SOON isn't it?? ) Yes, I am terrified but your message helps re-assure me that we are doing the right thing. My daughter is just 14 years old and the thought of surgery really scares me. I'm glad to have helped ease your mind in some small way. I don't want to pretend that surgery isn't a Big Deal, because any kind of surgery carries risk. But Dr. Pelligrini has a great reputation in this type of surgery (and the experience level of the surgeon seems to be the biggest factor in a successful surgery), and your daughter is going to be receiving top-notch care! I had three surgeries as a child (oral surgeries at ages 8 and 10, appendectomy at age 12) and two as an adult (tonsillectomy at age 28 and emergency c-section at age 30) and the healing process is sooooo much easier (in my experience) when you're younger! If you have time before you leave, I would try to get together some items for a "survival package" for both you and your daughter, to get through the boring hours in the hospital (as if the long flight wasn't going to be boring enough!) Little things to take your daughter's mind off of things can help her relax and just let her body heal. Maybe even wrap up a special treat to be opened each day, to give her something to look forward to? It doesn't have to be anything expensive (or large, since you'll have to cart this stuff across the Pacific!) Some ideas: ***Lip balm or lip gloss in a nice flavor (they give you a medicine before surgery to dry up your saliva so you don't choke on it under anesthesia, and in my case it kept me all dried out for several days) ***Books ***Magazines ***Stationery to write to friends/family ***Colored "gel" pens ***Prepaid phone card to call home ***Journal to keep a diary of her hospital stay (or the whole trip) ***New robe for walking around the hospital (when will they EVER design a hospital gown that doesn't show your buns hanging out the backside???) ***Deck of cards ***Hand lotion ***Koolaid packets (once approved by the doctor for anything besides plain water) -- helps break up the monotony to have a different flavor to look forward to than just water in the bedside pitcher. ***Unique cup/glass to drink from. ***Funky hair accessories (if she likes that sort of thing or has longish hair) -- barrettes, butterfly clips, ponytail holders, headbands, scrunchies, etc. (I had a friend French-braid my hair before going in for my son's birth.) ***Disposable camera (take pics of her hospital room, the doctor, her favorite nurse, view from her room, etc.) ***Chewing gum or mints, if approved by the doctor ***Funky toothbrush (who said a 14yo girl can't have a Barbie toothbrush, just to be silly?) And of course, anything of particular interest to your daughter (hobbies, etc.) Like I said, make up something like this for YOURSELF, too. At the very least, you'll want something to read, a pen and notebook for questions you want to ask the doctor and also to write down what the doc said (you'd be amazed how you brain goes blank at those times!), a phone card, a roll of quarters (vending machine snacks, etc.), and some gum or mints. Keep us in your prayers! I surely will, as will the rest of the group I'm sure (they're very good about that in this group!) I don't know if you'll have access to the internet in the hospital at all (some facilities have it available in the rooms to provide entertainment and information for the patients, and some have a "cyber cafe" available), but if you get a chance we'd love to get updates on how she's doing! At the very least, please fill us in when you get home. Wishing your family the BEST EVER gift this Christmas -- a healthy and happy child!!!!Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 > > Hi Suzi -- > > > > I tried accupuncture for about six weeks back when I was first > diagnosed. I didn't notice any changes in my swallowing function, > but I sure did find the procedure itself to be very relaxing. I > would come out feeling that sense of calmness that you feel after > getting a massage. > > > > I don't think it would hurt to give it a try. It didn't work for > me, but you never know if it will work for someone else. > > > > I'm glad you've gotten an appt. in Washington. Talk to the doctor > about your fears of surgery and ask all the " what ifs " that you can > think of. A good surgeon will be willing to answer all of your > questions. > > > > My own personal opinion on this is that your daughter is going to > be LESS damaged if she has the surgery. With a dilated esophagus, > she's going to have decaying food sitting there for days and days, > plus an increased risk of aspirating food/saliva when she's > sleeping. And her esophagus is going to dilate more and more and > more as time goes on. I've never heard of one single person whose > condition got better " all by itself " without some form of treatment. > > > > I haven't seen anyone on the group who has gotten LONG TERM relief > from non-surgical procedures. There are several people who have > posted to this group that they had surgery over 20 years ago..... > but I've not seen one person post here in the time I've been a > member that they had a dilation 20 years ago and that it's still > working. (If I'm wrong, someone please correct me on this one.) > > > > I have seen several studies that put the " success rate " of surgery > over 90% (when performed by an experienced surgeon) with " success " > meaning a considerable improvement in swallowing function. NOTHING > is going to be able to bring an achalasian's esophagus back to 100% > (unless they perfect the " pacemaker " technique in the future, but > that's still a long way off.) > > > > In my own case, I've had a couple of dilations (second one helped > a lot) and one Botox (didn't do a darn bit of good) and now I'm just > waiting for my symptoms to progress enough that I qualify for > surgery. I wish I'd known back in 1996 what I know now about > dilation and Botox -- I would have just had the surgery and been > done with it. Yes, I did get a few good years out of my second > dilation, but now I'm faced with my symptoms worsening again and my > only recourse is surgery (they won't do repeated dilations b/c > there's an increased risk of perforation with each subsequent > dilation.) The way I look at it, if I'm gonna have to end up having > surgery ANYWAY, I'd have been better off having it in the FIRST > place instead of wasting all this time and money on dilations, > botox, testing, etc. Now I'm the mother of a preschooler and my > husband travels and I have no family in the area to help out -- > having surgery at this point in my life is much more complicated > than it would have been back when I was single with no kids. > > > > Please keep us posted of when your appt is in Washington -- we'll > keep you and your daughter in our prayers! > > > > Debbi in Michigan From: Steve What type of surgery are you having? My doctor, Dr. s of USC (specialist in achalasia),wants me to have a highly invasive surgery where the esophagus is removed and replaced with a section of the colon that is tunnelled under the chest cavity (to keep its blood supply). He said the incision would sstart from behind my ear to my lower abdomen. Naturally I declined, and had a laproscopic myotomy with funduplication, which did nothing. All the residents had a field day with me, saying that I was the most advanced " specimen " they had ever seen. This hell started when I was 14 (1981), when I had one dilation (which the doctors said would be the only treatment offerred, ever). If it's any consolation, I wished I had surgery back then, rather than let my condition worsen with all the complications--- apiration, rotting food in my lungs, sinuses; bronchitis and now emphysema. ----------steve Quote Link to comment Share on other sites More sharing options...
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