Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 Just an update on (5 yrs old) : We were talking to Dr. Waldhausen at the Seattle Children's Hospital in regards to her surgery and he told us that they never did a proper UGI on her or a manometry to determine the proper treatment. We have been in limbo out here in Nevada and were going to move to Seattle until Dr. Waldhausen told us the motility clinic up there was going to be closing as of September this year. We have decided to move her to Cincinnati instead to be closer to the hospitals and the doctors out there, for her best chance at better care in the future. Thank you all for your posts and suggestions, they have been a blessing when trying to learn about this disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 VizionX wrote: > > Just an update on (5 yrs old) : > > We were talking to Dr. Waldhausen at the Seattle Children's Hospital > in regards to her surgery and he told us that they never did a proper > UGI on her or a manometry to determine the proper treatment. > Just to be clear, he was talking about a surgery done somewhere else? Did he think those tests would have made a difference in her treatment? We sometimes debate with each other in this support group about the need for all these tests when one seems conclusive. It would be interesting to know more about his statement. > ... Dr. Waldhausen told us the motility clinic up there was going to > be closing as of September this year. ... > Is this just at the children's hospital? Is there going to be no top level manometry center in Seattle, not even for adults? Good to know for giving recommendations when people are looking for doctors. The irony is incredible. The message starts with a doctor discussing a patient that didn't receive manometry at another center only to go on to say that they will be ending manometry testing too. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 Just to be clear, he was talking about a surgery done somewhere else? Did he think those tests would have made a difference in her treatment? Yes surgery was done in Reno, we wanted a second opinion and want a follow up from a bigger center that see more achalasia cases, and can do a manometry. Couple of emails he sent me: " I looked at the records that were sent. There is no operative note nor an Upper gastrointestinal (UGI) study that indicates the current state of her esophagus. Having both would be helpful. Achalasia is not a curable disease. The dilation to her esophagus will not likely resolve over time as someone suggested in the notes sent to me. Swallowing issues persist in these patients and they always have to chew thoroughly and eat more slowly. If the myotomy was complete it would have needed to have been extended onto the stomach for several centimeters and I don't know if that was done or not. There is evidence that certain medications such as nifedipine can help with the esophageal function but the studies are in adults. They may or may not be applicable to children. It was not clear to me if the reflux mentioned was actually due to foodstuffs in the esophagus being regurgitated (which would be commone) or if someone had done studies that actually demonstrated reflux from the stomach. (pH probe, UGI) In regard to the breathing, much of this may be due to the tracheomalacia but is worsened by the achalasia because food or liquid does not move well through the esophagus. This can be aspirated and worsen the malacia symptoms. I have not seen achalasia be the cause of tracheomalacia nor has one of our senior gastroenterologists. At your child's age I would have expected the malacia to have improved as this usually does by age 2. Was an aortopexy ever considered? If the malacia is causing ventilator dependence some anatomic configurations may be amenable to an aortopexy to help stent the trachea open. Usually this is done in infants but could be done in an older child as well. I'm afraid I don't have the answers for you that you seek. If you had the op note and a CD of a recent UGI that would be helpful however. If an upper gastrointestinal study has not been done, I would want one as this will give a different sort of information that the endoscopy. I hope this helps. Sincerely, HT Waldhausen M.D. Division Chief Pediatric Surgery Seattle Children's Hospital Professor of Surgery University of Washington School of Medicine Office: 206-987-1177 Fax: 206-987-3925 " " I do not have an UGI or the manometry and that is totally what I need. HT Waldhausen M.D. Division Chief Pediatric Surgery Seattle Children's Hospital Professor of Surgery University of Washington School of Medicine Office: 206-987-1177 Fax: 206-987-3925 " Is this just at the children's hospital? Is there going to be no top level manometry center in Seattle, not even for adults? Good to know for giving recommendations when people are looking for doctors. " I should let you know our motility person is leaving in September. I recently found out. HT Waldhausen M.D. Division Chief Pediatric Surgery Seattle Children's Hospital Professor of Surgery University of Washington School of Medicine Office: 206-987-1177 Fax: 206-987-3925 " I assume that means Seattle Children's Hospital. The irony is incredible. The message starts with a doctor discussing a patient that didn't receive manometry at another center only to go on to say that they will be ending manometry testing too. Yes... It is very ironic. - Chris From: achalasia [mailto:achalasia ] On Behalf Of notan ostrich Sent: Tuesday, June 05, 2012 6:27 AM achalasia Subject: Re: Update for VizionX wrote: > > Just an update on (5 yrs old) : > > We were talking to Dr. Waldhausen at the Seattle Children's Hospital > in regards to her surgery and he told us that they never did a proper > UGI on her or a manometry to determine the proper treatment. > Just to be clear, he was talking about a surgery done somewhere else? Did he think those tests would have made a difference in her treatment? We sometimes debate with each other in this support group about the need for all these tests when one seems conclusive. It would be interesting to know more about his statement. > ... Dr. Waldhausen told us the motility clinic up there was going to > be closing as of September this year. ... > Is this just at the children's hospital? Is there going to be no top level manometry center in Seattle, not even for adults? Good to know for giving recommendations when people are looking for doctors. The irony is incredible. The message starts with a doctor discussing a patient that didn't receive manometry at another center only to go on to say that they will be ending manometry testing too. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 wrote: > > > Couple of emails he sent me: > > " I looked at the records that were sent. There is no operative note nor an > Upper gastrointestinal (UGI) study that indicates the current state of her > esophagus. Having both would be helpful. ... > If the myotomy was complete it would have needed to have been extended > onto > the stomach for several centimeters and I don't know if that was done or > not. ... It was not clear to me if the reflux > mentioned was actually due to foodstuffs in the esophagus being > regurgitated > (which would be commone) or if someone had done studies that actually > demonstrated reflux from the stomach. (pH probe, UGI) > I get the impression this is more about moving forward than looking back. He did not receive the information he needs to know if the myotomy was likely complete and functional or how much of the problems are beyond the help of the myotomy or a redo of the myotomy. > ... If you had the op note > The surgeons report should say how far onto the stomach the myotomy was extended. Some surgeon do a conservative extension onto the stomach fearing acid reflux. Others do a more liberal extension depending on the fundoplication to prevent reflux. If the stomach portion of the myotomy was conservative then a redo to extend it more could be an option. The info should be on the report so any surgeon thinking about a redo would know how far it was initially done. > and a CD of a recent UGI that would be helpful however. > The CD would have images showing how dilated the esophagus is, how functional it is and how well barium moved through it. > I do not have an UGI or the manometry and that is totally what I need. The manometry would tell if the myotomy reduced pressure enough. If not, then that is another thing pointing to a redo as an option. If the pressure is low with not high pressure points remaining then the problem may not be the myotomy. The manometry could also indicate other problems. > " I should let you know our motility person is leaving in September. I > recently found out. > I don't see from this that the motility clinic is closing only that the motility person is leaving. I would think they would want to get another. Did he say the clinic is closing? If not he may just want to you to avoid coming at the time the one is leaving in case they have not gotten someone else yet, or up to speed. But maybe it is closing. notan Quote Link to comment Share on other sites More sharing options...
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