Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 In a message dated 6/14/99 10:00:21 PM Beijing Standard Time, Ltlredski@... writes: << anyone ever chokes on their own saliva? >> Does sound gross - but YES! I wake up at night doing that - coughing and choking. Doesn't happen very often though. When it starts - I'll do it every night for a while then it will go away for weeks - sometimes months. My neck is really stiff at those times too. Peggy ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 In a message dated 6/14/99 10:50:08 PM Beijing Standard Time, PStout9230 writes: << In a message dated 6/14/99 9:58:35 PM Beijing Standard Time, mull0044@... writes: << almost like the bones are clicking. >> For about 2 yrs now, my throat feels like the bones in front slide out of place and get stuck. I can take my fingers and gently push them back over, they click and the pain goes away except for a little soreness. But I don't know what it means. I've never told the dr about it. [Just changed doctors due to insurance - and she hasn't gotten past trying to get my triglycerides down and figuring out what is wrong with my arm and shoulder.] Maybe we'll get to the throat some time next year. Don't guess I'll live long enough to get everything fixed! Peggy >> ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications In a message dated 6/14/99 9:58:35 PM Beijing Standard Time, mull0044@... writes: << almost like the bones are clicking. >> For about 2 yrs now, my throat feels like the bones in front slide out of place and get stuck. I can take my fingers and gently push them back over, they click and the pain goes away except for a little soreness. But I don't know what it means. I've never told the dr about it. [Just changed doctors due to insurance - and she hasn't gotten past trying to get my triglycerides down and figuring out what is wrong with my arm and shoulder.] Maybe we'll get to the throat some time next year. Don't guess I'll live long enough to get everything fixed! Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 In a message dated 6/14/99 10:26:22 PM Beijing Standard Time, mull0044@... writes: << I have mentioned this to the doc....but says we just have to run more tests...I did a barium swallowing study and of course....the doc said it looked normal.....but of course....ughhhhhh go figure >> I had the swallow study done also. The said the muscles waves [that happen when you swallow] are going in reverse. Says this is unusual [have we been called that before?] in a person of my age. Says it could be early " presbyesophagus " . Looked that up but couldn't find out much about it except it happens in " persons over age 80 " . I know I'm getting old - but I'm a loooong way from that! However, my family dr did not even tell me that was on the report. She said they didn't find anything. I found it when I got copies of med records for the new dr [ who says she doesn't even need them. Guess she figures she'll start from scratch.] They also found " a small sliding hiatal hernia " that she neglected to mention. Could THAT be the reason for the chest pain and pressure I have felt all these years? duhhhhh.. Anyway, nobody has told me if this reverse wave thing can cause choking. Matter of fact - nobody has told me much of anything - except you guys!! Peggy ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Hey group, First, thanks to EVERYONE who replied to my surgery question. I'll keep you posted about my decision! And now, yet another question from Little Miss Questions herself: when people first have swallowing difficulties, how do they manifest themselves? For a few years now, on a semi-regular basis when I'm drinking something, I'll start to cough when I'm swallowing it, as if I haven't been quite mindful enough and a little bit of liquid has " slipped down " my throat in advance of the rest of it. (Hope I explained that right!) I don't really choke, gag, etc., at this point, just cough for a few seconds, and then I'm better. Is this how you have experienced swallowing problems starting, or is this one of those nebulous Chiari things that my mom likes to say " you and half the rest of the world " to? And yes, I'm going to ask my doctor about this, too. :-) Thanks. ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 -----Original Message----- >people first have swallowing difficulties, how do they manifest themselves? Hi .... I have started to have swallowing problems too...I don't always cough...but I know what you mean...I do that too....it is more like my throat just simply forgets how to swallow......like it goes down lumpy or something...ugh..very difficult to describe.....almost like the bones are clicking...hmmmmmm......don't know if that makes sense....difficult to describe huh? I also feel like someone is pressing on my throat from the back.....or from the left side....which when this happens..drives me silly..... I hope this helps big hugs leanne ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 >>>if anyone ever chokes on their own saliva? Sorry that sounds a little >gross > Hi Kathy and Leanne, Yes, me too, only once in a while, and I never gag, just cough. And it's just like Leanne said -- like it's " slipping " down my throat. For years now I've also had a problem with very sugary chewing gum and sometimes sucking candies -- as soon as I put those in my mouth, I choke. Then it goes away. in Boston ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 When I have swallowing problems, they are a clicking type feeling, like bones are clicking together. It also feels like my throat is swelling, and I do choke on my own spit. I have to swallow foods and drinks very slowly. Oh and it sometimes feel as though I'm being strangled. Love & Hugs _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Hi, Yes, I am more apt to choke on my own saliva... not often, but enough! I think because I'm more aware of possibly choking while eating, I'm more careful, but since I constantly swallow, the chances are higher for it to " go down wrong " . Also if I suddenly lean ahead and my mouth is open, I'll drool! If that ain't embarrassing! This has been slowly progressing the past few years. The choking has been present since the decompression surgery. Luella BTW... I thought Paradise is mid-way between Heaven and Hell eGroups.com home: /group/chiari www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Hi! The way I understood the swallowing thing was that you are losing or have lost your gag reflux. When I went to 2nd opinion and this dr knows about Chiari, he found on one side I have no gag reflux. He did not like this at all and immediately got me in to see Dr Menezes in Iowa City (not just for that but was very concerned about it). One month later I literally have no gag reflux now. This is a serious thing coz' it affects breathing, swallowing just the normal things in life we need to do. Apparently after talking with (he is a member here) after his surgery the gag reflux was one of the first things Dr Menezes checks for. I am still new at this but I do think that if you don't have a gag reflux you definately need to get it checked out and also if you have ACM this definately goes with it. Mine is progressing seemingly a little more rapid than I thought it would so I have decided surgery is the best thing. No expert but definately don't like choking on everything!!! Tina aka Sunflowers ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 In a message dated 6/14/99 9:00:21 AM Central Daylight Time, Ltlredski@... writes: << I would also like to hear the answers to this question and also ask if anyone ever chokes on their own saliva? >> This was 's worst problem. His vocal cords were not paralyzed however they were not closing all the way properly, allowing all the saliva to just flow into his trachea. In turn this led to the aspiration, which led to the chronic aspiration pneumonias and pseudomonis in his respiratory track which ultimately led to ARDS ( lung failure). Because his chiari was not addressed, and the NSG allowed the other docters to treat the symptoms (constant antibiotics and breathing treatments for the pseudomonis and pneumonias) his lungs were very severly damaged, and his respiratory system severly compromised. He ended up in a coma on life support for 60 days, and a permanent trach and humidified oxygen dependent. With this procedure they completely seperated the esophagus and trachea so there is absolutely no physical way can choke or aspirate from swallowing. He only breathes thru the trach. Although this is allowing to start to taste food and drinks (He was totally tube fed for 6 years) he no longer can talk. The procedure took away the ability to use his vocal cords permanentaly. It was definately worth it as his lungs are healing slowly, and maybe will be strong enough to be weened off the oxygen, he no longer chokes on his own saliva and is beginning to start to learn to eat and drink after 6 years However the cost was high....he will NEVER talk again. So I can not stress enough...if this is one of your symtoms....please get it addressed immediately before there is too much irrepairable damage to your lungs. Since 's decompression his swallowing has improved in that I can see him swallow completely different and the food goes down easier. It no longer comes out his nose either. The decompression definately helped the swallowing issue for him. And had we had a competent NSG from the beginning and the chiari had been addressed when was a year old instead of at 7 yrs old he might not have had yeas of aspiration pneumonias and pseudomonos, gone into lung failure, 60 days on life support in a coma or have the permanent trach and oxygen dependency. Address this issue before it causes permanent irreverseable damage!!! Love, hugs and prayers, Haydee (Nana to , 7 yrs. old w/Spina Bifida, ACM II, Hydrocephalus w/VP Shunt, Syringomeylia w/syrinx at c1-c2, G Tube-fed, (totally NPO), Seizure Disorder, Swallowing Coordination Disorder, Neurogenic Bladder, Lung Failure 3/30/97, 33 days on total Lung Bypass (ECMO), 60 days on dual Life Support, Now Humidified Oxygen Dependent, Radical Tracheostomy w/Total Loss of Vocal Cord Use, Paralyzed from the Waist Down, 18 Surgeries, Asthma, Severe Latex Allergy, Allergies to many Medications, Adhesives, and tons of other Stuff, With Such a Wonderful Love of Life and one crazzzy Nana living right outside Baton Rouge, Louisiana, Posterior Fossa Decompression, Duragraft (using own neck muscles) and a Laminectomy of c1-c2, on March 2, 1999, so far so good and getting better and stronger every day!!!) 's web page~~~~~~~> <A HREF= " http://www.pressenter.com/~chip/joshua.htm " >The Story </A> http://www.pressenter.com/~chip/joshua.htm ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 In a message dated 6/14/99 10:00:27 AM Eastern Daylight Time, Ltlredski@... writes: << when people first have swallowing difficulties, how do they manifest themselves? >> I would also like to hear the answers to this question and also ask if anyone ever chokes on their own saliva? >> My swallowing problems started with just coughing a bit when I drank something...A few coughs, I was able to clear my throat and I was fine. Sometimes I had liquids go through my nose (that's always an attractive site LOL) Then I moved onto having trouble swallowing solid foods...Nothing real serious...but very aggravating. My swallowing problems disapeared after surgery. I'm 6 months post-op. Just recently I've been starting to cough and choke...but not while eating...sometimes on my saliva again, but mostly it feels like something is in my throat..kind of a cross between something stuck and a really bad tickle...I know that didn't make one bit of sense did it? Tina ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Tina, <<but mostly it feels like something is in my throat..kind of a cross between something stuck and a really bad tickle...I know that didn't make one bit of sense did it? >> Actually that made a lot of sense. I have not had surgery yet, but often I get that feeling that is between " somthing stuck and a really bad tickle " . I was not sure what was causing it, but I should have guessed it would probably be the chiari! : ) When I am really tired, or have had my neck in an ackward position for a long time, I feel like there is a large lump in my throat, and it is difficult to swallow. Thanks for clearing that up for me - it made perfect sense. Hugs, (FL) ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 In a message dated 6/14/99 12:40:43 PM Central Daylight Time, sun4flwrs@... writes: << The way I understood the swallowing thing was that you are losing or have lost your gag reflux. >> Very interesting! I was wondering how many of you that are having the swallowing problems have been told you have no gag reflex? I do not have one, but I do not choke on anything. Wonder why? Love, ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 hi all, I know I've said this before, but PLEASE pay close attention to these swallowing problems. I used to choke on just about anything, but especially anything liquid. I've had all the tests and do have a slight throat deformity. But the chiari caused the choking. It got to the point that I passes out from not breathing. I was able to breath out, but not in. This is what lead to my surgery..Breathing is kinda' important. Mine did get better after the surgery, but it seems to be gradually coming back. PStout9230@... wrote: > > In a message dated 6/14/99 10:26:22 PM Beijing Standard Time, > mull0044@... writes: > << I have mentioned this to the doc....but says we just have to run more > tests...I did a barium swallowing study and of course....the doc said it > looked normal.....but of course....ughhhhhh go figure >> > > I had the swallow study done also. The said the muscles waves [that happen > when you swallow] are going in reverse. Says this is unusual [have we been > called that before?] in a person of my age. Says it could be early > " presbyesophagus " . Looked that up but couldn't find out much about it except > it happens in " persons over age 80 " . I know I'm getting old - but I'm a > loooong way from that! However, my family dr did not even tell me that was on > the report. She said they didn't find anything. I found it when I got copies > of med records for the new dr [ who says she doesn't even need them. Guess > she figures she'll start from scratch.] They also found " a small sliding > hiatal hernia " that she neglected to mention. Could THAT be the reason for > the chest pain and pressure I have felt all these years? duhhhhh.. > Anyway, nobody has told me if this reverse wave thing can cause choking. > Matter of fact - nobody has told me much of anything - except you guys!! > Peggy > > ---------------------------------------------------------------------- > eGroups.com home: /group/chiari > www. - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 If you go down to the bottom of this message and go into " messages " and put " swallowing " in the search, you will probably come up with all kinds of conversations we have had. It is just a quick way to search and not have to wait for answers. I think also has a section in the lists only I don't know exactly where. You might want to look through the titles. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. RE: Swallowing Though I'm writing before all of the tests of been performed, a swallowing test was given to my Mom this morning in the hospital (she aspirated on Friday). I'm told she has very limited movement and couldn't swallow applesauce. She was also not able to swallow water. Last week she was still eating full meals. She currently has a staph infection which may be compromising her more, but I don't think it's going to make that much difference (maybe I'm wrong). They are going to check her esophagus later today and will probably need to put in a peg for a feeding tube. I know many of you have written about swallowing issues, etc. before but I hadn't paid too much attention at that point. I don't see anything on our support group list under swallowing so I just thought I'd check with all of you re feeding tubes and if any of your loved ones have one. I'm told it can be temporary. Thanks, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Norma, in the links section: http://health.groups.yahoo.com/group/LBDcaregivers/links w/in the folder marked: Movement Disorders in LBD Parkinsonism, Restless Leg Syndrome, Swallowing issues, etc. there's a sub-folder marked: Swallowing Issues Links for swallowing issues Maybe you'll find something useful there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Norma, Hope you got to " search " the messages. You have to go to the Yahoo site, but you can search all if you want. If you need more help, let us know. has put a lot of it in the archives. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Re: Swallowing Oh, thanks, . Is there any way for me to just search the whole site? (I don't think so.) " " <octoryrose@yahoo .com> To Sent by: LBDcaregivers LBDcaregivers@yah cc oogroups.com Subject Re: Swallowing 01/02/2008 01:28 PM Please respond to LBDcaregivers@yah oogroups.com Norma, in the links section: http://health.groups.yahoo.com/group/LBDcaregivers/links w/in the folder marked: Movement Disorders in LBD Parkinsonism, Restless Leg Syndrome, Swallowing issues, etc. there's a sub-folder marked: Swallowing Issues Links for swallowing issues Maybe you'll find something useful there. Quote Link to comment Share on other sites More sharing options...
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