Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 , I agree with Debbi. Cleveland is one of the best hospitals for Achalasia, if it were me, this is where I would want to take my child. I’m sorry your Grandson has to suffer with this disease. I just want to scoop little Trevor up into my arms and give him the biggest hug! I bet he’s a little sweetheart! I wish you all the best. Sandi Re: trevor , I highly recommend taking your grandson to Cleveland sooner, rather than later. I don't know much about Cincinnati's hospitals, but I do know that Cleveland sees more achalasia than anyone else in this country. Because of the rarity of achalasia, it's important to find doctors who have seen a lot of it and who have access to the latest research, etc. Many of us here in this group wish we had known about Cleveland (or other highly experienced doctors that are available in other regions of the US) when we were first diagnosed; since you're already in Ohio, I would just go straight to Cleveland if it were my son in this situation. Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 I can't speak with experience but I DO know that Cincinnati Children's hospital is one of the best children's hospitals in the country. If that is where he will be treated, I would trust them. If he is older and if he would be at University Hospital in Cincinnati, I would take him to The Cleveland Clinic. I do live in this area, if there is anything I can do to help, let me know! Jan in Northern KY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Trevor's Grandmother put out a recent posting about Trevor's condition. However she is 600 miles away making it hard to understand everything. First Trevor was born with Cricopharyngeal achalasia but was not diagnoised until six months of age. The Dr's contributed his constant problems to reflux (which he did not have) and bronchitis. Finally after my instance he was tested. Trevor underwent six dilatations but the test showed sever inconsistency. Trevor last April underwent the myotomy. Trevor cannot eat or drink anything orally since the myotomy. He did suffer Vocal cord paralysis - which has since healed. We have gone to Cincinnati. The primary goal was not to rush and do another surgery but get Trevor healthy and work on his development delays caused by being traumtized from a long stay at the hospital. Trevor is 2 1/2 29 lbs. His speech is great. Trevor's cognitive skills are beyond a two year old. We could not be more pleased. Trevor does not have any neurological disorder that is usually associated with his condition. Currently Trevor's Cricophyarngeal looks good. However, his upper esophagus basically pulls up instead of down when he swallows. I have been told by the Dr's at this point their is not a diagnosis name. The only thing they could give me is esophageal immotality (meaning esophagus does not work properly). Trevor will be the first kid in the area (NC) to undergo Vital Stem Therapy. I have already made them use this on me first. The Therapists has been certified and trained by a member of Cleveland Clinic. If anyone has had Vital Stem success or not please let me know. If anyone knows of anyone with this esophagus problem without neurological problems please let us know. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 I've never heard of Vital Stem before -- do you have any information on it? Also, was Trevor's myotomy done on his LES or UES? Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 In a message dated 3/31/2004 2:48:12 PM Eastern Standard Time, hastings@... writes: Also, it appears that peristalsis in achalasics with dysfunctional, as apposed to destroyed, nerves (vigorous achalasia) may benefit from VitalStem treatments Notan, This is probably a dumb question, but,........how do they determine dysfunctional nerves as opposed to destroyed nerves? Jan in Northern KY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 , Good luck with the Vital Stem, and give Trevor a big hug from me. This thing is heard enough on an adult, I can't imagine what it is like for a child. Where in NC are you? I live on the coast near New Bern, but am having my myotomy at Duke Medical.\ in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Debbi Heiser wrote: .... none of us have had (or even heard of) this electro-shock therapy -- .... Watch it there! People already think we are nuts. How about, " electrical stimulation " instead of " electro-shock " ? ;-) BTW: if you do a search for " electrical stimulation " with words like " achalasia " you can find some interesting info. Not just about VitalStem, but TENS and other research. Apparently electrical stimulation of some nerves will increase the amount of VIP, which inhibits contractions in smooth muscles. Electrical stimulation of the vagus nerve will cause the stomach and the LES to relax a bit. Also, it appears that peristalsis in achalasics with dysfunctional, as apposed to destroyed, nerves (vigorous achalasia) may benefit from VitalStem treatments. I have not read enough to know why it is not being used more. TCC is the main place for VitalStem so I am sure they have a reason. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 LOL -- never even occurred to me that it could be considered like psychiatric treatment! hehehe ;o) Thanks for the laugh, notan! I'm guessing that maybe this is still in the "research and development / clinical trial" phase? (Swamped at work for the next 3 weeks, so no time right now to read any links on the subject.) Maybe that's why it hasn't come up so far? I know that my GI had mentioned that the "pacemaker" kind of thing (maybe it would be called the "peristalsis-maker"???) was the "wave of the future" but it was still at least a decade out, still being studied, etc. It would be great if they could figure out a way to make the muscles perform properly (w/ the "peristalsis maker") so we didn't have to deal w/ Botox, Dilations, or Heller Myotomies AT ALL anymore!!!Deb Debbi Heiser wrote: .... none of us have had (or even heard of) this electro-shock therapy -- ...Watch it there! People already think we are nuts. How about, "electrical stimulation" instead of "electro-shock"? ;-)BTW: if you do a search for "electrical stimulation" with words like "achalasia" you can find some interesting info. Not just about VitalStem, but TENS and other research. Apparently electrical stimulation of some nerves will increase the amount of VIP, which inhibits contractions in smooth muscles. Electrical stimulation of the vagus nerve will cause the stomach and the LES to relax a bit. Also, it appears that peristalsis in achalasics with dysfunctional, as apposed to destroyed, nerves (vigorous achalasia) may benefit from VitalStem treatments. I have not read enough to know why it is not being used more. TCC is the main place for VitalStem so I am sure they have a reason. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 I only wish I knew, -- the GI doc I was talking to about it isn't even the one I see for my achalasia (she was checking to see if a duodenal ulcer had healed). I was just getting her opinion (this was as I was planning for my first appt at TCC) of what the future had to hold, b/c my family doc was telling me to hold off as long as possible b/c "in his opinion" lap. surgery was being improved tenfold every year. I was curious about her opinion on the matter, and she brought up the "pacemaker" thing. I would think that people who have a successful myotomy but still need the peristalsis of the body of the esophagus would be eligible for an esophageal pacemaker, but that's just me guessing -- seems like they could hook up all the parts except the LES one, since the LES would already be open, ya know? But again, that's just my personal view on it....Deb Debby-you are extremely informative-do you know if the future "pacemaker" for achalasia will be available for any of us who have had myotomies and/or dilations-who has the research on this treatment-thanks from BostonDebbi Heiser <heiser@...> wrote: That's what I thought... UES problems aren't as common here on this board, as achalasia is generally considered a disorder of the LES. That's probably also why none of us have had (or even heard of) this electro-shock therapy -- our problems aren't so much in our "neck" as in our "stomach" area. When I talked to my local GI a year or so ago (she only treats my ulcer, not my achalasia), she said that the biggest "new" thing that she foresees in the future (10-15 years down the road) for treatment of achalasia is something like a "pacemaker" implant -- electrodes would signal the entire esophagus to contract in a peristaltic fashion and signal the LES to open at the end of the sequence. That sounds basically like what you guys are trying w/ Trevor's upper esophagus, only one is internal and one is external, and one is LES-oriented and one is UES-oriented. I hope it works for you guys!Debbi Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.