Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Hi Welcome to the group. You have definitely come to the right place for answers. My personal opinion on this is that surgery is the best option, but that is just my opinion. My husband had surgery this past January and it is has been wonderful. A no longer consumes our lives. My thoughts are that your doctor does not do surgery, so his treatment offers are what he is going to push. I would schedule an appointment with a surgeon and get his/her opinion. When Chet had surgery, the surgeon said that it is to bad that so many patients with A do not even see a surgeon until they suffer for years - the GI doctors use their dilations and botox until this is no longer sufficient. I hope that you find the answers that you are looking for here - I am sure you will. Keep us updated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Hi , and welcome. My doctor sent us to a Neurologist (for other things) but did mention that she was concerned with " brain squish " (there is a medical term for ya) LOL and said that she wanted us to have an MRI. Well we will be having an MRI on 11/30/04 to check for brain defects as ordered by the Neurologist who almost died laughing on the floor when he heard about the " brain squish " idea. LOL will be 10 months old two days before the MRI. They will be sedating her and I am freaked about that as well. But it is an important thing that needs to be done to find out why has low tone (Hypotonia). Hope to get to know you. mom to S., in CA -Optic Nerve Hypoplasia (visual therapy) -Central Hypotonia (PT & OT) -Torticollis (mostly resolved) -Brachy/Plagio (casted 11/4 for DOCband, should be banded 11/18) --- In Plagiocephaly , " " <jensworld17@y...> wrote: > > Hi there, > I am the mom to a little angel, Brady (6.5 months old) At 4 months > old, the ped talked to me about tort and we tried some repo tech. > at our 6 mo appt, the dr. recommended we see CranialTech - I was so > scared but they are the nicest people ever - they agreed that Brady > had a mod-severe case of plagio and would consult with my ped. Dr > wrote the script and faxed it last Friday - BUT THEN called me > Saturday and said that he really would like us to get a CT scan for > his brain first this week.....my husband took the call and I think > was caught off gaurd and really didn't ask too many questions. The > scan is set up for Thursday and he will be under sedation - ugggg! > Has anyone had a doctor want a CT scan - am I freaked out about > nothing? Thank you in advance - I am really addicted to reading > everyones stories. > Take Care, > > - mom to Brady Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 , Hello and welcome to the group! We have something in common. I joined the group a couple of months back because of my husband, also. He doesn't have achalasia, but Diffuse Esophageal Spasm (DES) which is very similar and can actually lead to achalasia. With DES, he gets wierd spasms in his esophagus, not proper peristalsis, but his LES still works right. His symptoms are very similar to achalasia. He was also misdiagnosed for the first 2 years. I can relate when you say your husband gets frustrated - mine does, too. Sometimes he almost chooses to deny the problem, although since he has lost 60 lbs. over the last 3 years and now misses an average of a day a week from work with pain, lack of sleep, and dehydration from spasms, it's pretty hard to deny there's a problem. I don't know if your husband does this, but sometimes mine will just say " I'm alright " , when friends or relatives ask him how he's doing, rather than go into the gory details. Since I've joined the group and showed him the responses I've gotten, though, he seems more empowered to talk about how he feels (that's a lot since he's usually a man of few words). He feels relieved, in a way, to find that he's not the only one dealing with these symptoms. It's helped him to feel more determined to find a solution, too, although we haven't found a good treatment for him, yet. We live in the Detroit area and last month we traveled a few hours to the Cleveland Clinic for a consultation, after hearing of many success stories from the group. We're going back next week for Botox and hoping they'll find a good treatment for him soon. If you haven't done so, I would recommend checking out the other areas of the website. There's a lot of links to medical websites and other info. that can help you both. Just knowing more about the disease will help you both tremendously (it's helped my husband and I). Also, there's a list of recommended doctors from others in the group, that may help you. I can completely understand when you mentioned " WE were diagnosed 2 years ago " because it does affect the whole household! I'm so sorry to hear that your husband has achalasia, but I'm so glad you've found this website! I wish you both lots of luck! Please us posted on how he's doing! in Michigan > Hi Everyone, > > I am the wife of an achalasia sufferer who was misdiagnosed for years. > We were diagnosed for achalasia 2 years ago, and have had one balloon > therapy. My husband is very frustrated with this illness. Mostly, he > hates eating, unless it's an easy event. He gets very angry when he > gets " stuck " , and everyone around asks " are you ok? " . We're at the > point of him just dealing with it. I'd like him to go for more balloon > therapy, or maybe, if I can talk him into it with research, surgery. I > am so glad you all have made this group what it is today. I look > forward to all that there is and will be to learn. > > Thanks- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 You can only encourage your 'friend' to seek alternative means which he seems to think is good. One of the problems in seeking to help others is classic. We want to do all of the good things but the patient does not. Your friend has fallen into the pit dug by the conventional practitioners. 'You either do what we say or you die'! That's what comes from their story. Or the patient has read up on his condition, as I did, and becomes somewhat depressed. With some effort and searching one begins to learn that other things are 'out there'. Your problem is getting your friend to stop, take a breath................then start looking for ways to beat this. Beyond this I would not make too much of a suggestion. Get your friend off the dark horse onto the white horse. Joe C. Quote Link to comment Share on other sites More sharing options...
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