Hi All ,I'm Vicki and I'm wondering if anyone else has problems with swallowing certain things,cold drinks,water and juice make me start coughing and it lasts for around 5 mins .Carbonated drinks cause painful winds pockets in my oesophagus and if my hot drinks cool off I find them really hard to swallow so its got to the stage the only drink I enjoy is a hot cup of tea,often by the time I get halfway through it I microwave it to get it back to a good temperature. It was good for about 18 months post surgery but now its really starting to bother me again.
Am waiting on blood test results ,Dr decided he'd take bloods and get a range of tests done then when I go back he'll do the referral to the Rheumatologist ,he doesn't like being wrong about anything.!!!l!
My name is Barbara and my three year old son was diagnosed with Chiari 1 on August of 2014, We chose not to go with the surgery being that he's a very happy baby and has many underlying medical issues, ( he is a micro-premie, born at 24 weeks ) but one thing that has ALWAYS been a problem has been his swallowing issues, at any given time while he's eating or drinking a bottle (yes, he still takes a bottle b/c of all his throwing up we puree many of his foods) Our NS has told us that his gag reflux and the vomiting is a direct effect of his Chiari. I still feel that at this point it's still not enough for us to put him through the rough surgery. My lil guy has so many issues that are not related to Chiari that I feel the only way that I will go for surgery is if he were ever to start experiencing any type of pain. I'm sure my response doesn't give you any answers or solutions to your issues but I thought it'd be cool to reach out to another Chiarian with swallowing problems. I pray for you to feel better and always stay strong and positive.
Hello, I too have issues with swallowing. However, my symptoms vary day to day so it is not constant. But, when my face starts to get numb and or tingly, then my tongue begins to feel strange and I can not swallow. Mine doesn't seem to be with certain foods, but rather with certain other symptoms. I wish you luck with your doctors!
I have some trouble with swallowing and I saw GI. Also have GERD and IBS. I was found to have a schatzki ring stricture and had to have my esophagus dilated. Have you seen GI or ENT?
Hi Kallee, yes I seen GI ,had a stretch done,think it may have constricted again ,also had the tube through the nose to stomach with it left in overnight to see what happened when I was eating, sleeping and generally moving around.Everything seemed okay a couple of months post Chiari decompression and duroplasty (2yrs almost) but now things seem to be going backwards again.GI did say once they stretch the oesophagus it can need to be done more than once.Did meet a non Chiari patient who was going for her 3rd stretch so maybe I'll see about a referral back to GI.
Kallee said:
I have some trouble with swallowing and I saw GI. Also have GERD and IBS. I was found to have a schatzki ring stricture and had to have my esophagus dilated. Have you seen GI or ENT?
Hi Barbara, my now 5 year old was born with a Chiari Malformation and Syrinx. We found out when he was 14 months old with an MRI. He always had swallowing issues and would avoid certain foods and his gag reflex is still really bad even after surgeries. He used to vomit no matter what he ate or drank and he still vomits randomly and with certain foods that we now avoid. Does your son have a syrinx? My son was really bad with all of his symptoms and couldn't breath and his syrinx was large so there was no other choice but to do the surgeries. The surgery pretty much got rid o all of his symptoms except the swallowing issue and vomiting....but they are much better than they were.
ChiariMommy said:
Hi Vicki,
My name is Barbara and my three year old son was diagnosed with Chiari 1 on August of 2014, We chose not to go with the surgery being that he's a very happy baby and has many underlying medical issues, ( he is a micro-premie, born at 24 weeks ) but one thing that has ALWAYS been a problem has been his swallowing issues, at any given time while he's eating or drinking a bottle (yes, he still takes a bottle b/c of all his throwing up we puree many of his foods) Our NS has told us that his gag reflux and the vomiting is a direct effect of his Chiari. I still feel that at this point it's still not enough for us to put him through the rough surgery. My lil guy has so many issues that are not related to Chiari that I feel the only way that I will go for surgery is if he were ever to start experiencing any type of pain. I'm sure my response doesn't give you any answers or solutions to your issues but I thought it'd be cool to reach out to another Chiarian with swallowing problems. I pray for you to feel better and always stay strong and positive.
Hello Toni, no, Angel does not have a syrinx and he was not born with Chiari. Since birth , Angel started getting 90 day MRI's to keep track of his hydrocephalus ( it was discovered in the NICU when he was 1 month old ) we also decided against surgery then and as of today he still has not undergone any type of surgery for that either. After Angel turned a year old they decided to do MRI's every six months and never was there any evidence of Chiari until August of 2014, but he always had those gagging reflux even prior to his diagnosis but it seems that the summer before diagnosing him, the gagging became so much worse, he throws up daily even if just once. But, as I mentioned before, we will not go for surgery unless things become a lot worse or if any pain is evident. For the most part, he is such a happy baby ( well, he's soon to turn 4, but he's tiny and with his disabilities seems like a baby to us ) that we just do not want to interrupt his happiness as of now. Another thing, has your LO ever experienced balance issues? Angel has issues with balance which we've also seem to have noticed getting a little worst but he also suffers from severe low muscle tone due to his prematurity, but like I said, we've noticed it getting worse.
Barbara ( ChiariMommy)
Toni said:
Hi Barbara, my now 5 year old was born with a Chiari Malformation and Syrinx. We found out when he was 14 months old with an MRI. He always had swallowing issues and would avoid certain foods and his gag reflex is still really bad even after surgeries. He used to vomit no matter what he ate or drank and he still vomits randomly and with certain foods that we now avoid. Does your son have a syrinx? My son was really bad with all of his symptoms and couldn't breath and his syrinx was large so there was no other choice but to do the surgeries. The surgery pretty much got rid o all of his symptoms except the swallowing issue and vomiting....but they are much better than they were.
ChiariMommy said:
Hi Vicki,
My name is Barbara and my three year old son was diagnosed with Chiari 1 on August of 2014, We chose not to go with the surgery being that he's a very happy baby and has many underlying medical issues, ( he is a micro-premie, born at 24 weeks ) but one thing that has ALWAYS been a problem has been his swallowing issues, at any given time while he's eating or drinking a bottle (yes, he still takes a bottle b/c of all his throwing up we puree many of his foods) Our NS has told us that his gag reflux and the vomiting is a direct effect of his Chiari. I still feel that at this point it's still not enough for us to put him through the rough surgery. My lil guy has so many issues that are not related to Chiari that I feel the only way that I will go for surgery is if he were ever to start experiencing any type of pain. I'm sure my response doesn't give you any answers or solutions to your issues but I thought it'd be cool to reach out to another Chiarian with swallowing problems. I pray for you to feel better and always stay strong and positive.
Hi Barbara,sorry your little man is facing so many hurdles,prior to my surgery I had trouble swallowing anything, even pureed food with sauces wouldn't go down properly.My biggest problem then was half my fluid intake was being lost because I would cough then be sick or food and drink would sit in my oesophagus so when I laid down to sleep I would get reflux and then I would end up in ICU with aspirational pneumonia, I had 8 bouts of it from Oct 2011 to Dec 2012,i had my 9th bout after decompression due to them laying me flat after surgery and I was sick coming round from the anaesthetic and by next morning had it again.
Just a thought I had about your little man,Drs say children's pain receptors don't mature till a certain age,I'm not sure how old,I only remember as one of my premmie twins had shingles on her bottom at 3yrs old(she had a few chicken pox when only a few weeks old)I was curious as I'd had shingles myself just before twins 1st birthday and the pain was almost unbearable but she was just trying to scratch them and I asked the Dr about how much pain she'd be in and they said the nerve ends don't mature till they are older so her shingles itched but weren't painful.Maybe its something to discuss with your sons Drs in regard to will he start having the terrible pain caused by the pressure in the brain or he may be one of the lucky ones that don't have lots of problems with the Chiari.
All the best and hope your little man can continue to progress ahead without pain and suffering.
ChiariMommy said:
Hello Toni, no, Angel does not have a syrinx and he was not born with Chiari. Since birth , Angel started getting 90 day MRI's to keep track of his hydrocephalus ( it was discovered in the NICU when he was 1 month old ) we also decided against surgery then and as of today he still has not undergone any type of surgery for that either. After Angel turned a year old they decided to do MRI's every six months and never was there any evidence of Chiari until August of 2014, but he always had those gagging reflux even prior to his diagnosis but it seems that the summer before diagnosing him, the gagging became so much worse, he throws up daily even if just once. But, as I mentioned before, we will not go for surgery unless things become a lot worse or if any pain is evident. For the most part, he is such a happy baby ( well, he's soon to turn 4, but he's tiny and with his disabilities seems like a baby to us ) that we just do not want to interrupt his happiness as of now. Another thing, has your LO ever experienced balance issues? Angel has issues with balance which we've also seem to have noticed getting a little worst but he also suffers from severe low muscle tone due to his prematurity, but like I said, we've noticed it getting worse.
Barbara ( ChiariMommy)
Toni said:
Hi Barbara, my now 5 year old was born with a Chiari Malformation and Syrinx. We found out when he was 14 months old with an MRI. He always had swallowing issues and would avoid certain foods and his gag reflex is still really bad even after surgeries. He used to vomit no matter what he ate or drank and he still vomits randomly and with certain foods that we now avoid. Does your son have a syrinx? My son was really bad with all of his symptoms and couldn't breath and his syrinx was large so there was no other choice but to do the surgeries. The surgery pretty much got rid o all of his symptoms except the swallowing issue and vomiting....but they are much better than they were.
ChiariMommy said:
Hi Vicki,
My name is Barbara and my three year old son was diagnosed with Chiari 1 on August of 2014, We chose not to go with the surgery being that he's a very happy baby and has many underlying medical issues, ( he is a micro-premie, born at 24 weeks ) but one thing that has ALWAYS been a problem has been his swallowing issues, at any given time while he's eating or drinking a bottle (yes, he still takes a bottle b/c of all his throwing up we puree many of his foods) Our NS has told us that his gag reflux and the vomiting is a direct effect of his Chiari. I still feel that at this point it's still not enough for us to put him through the rough surgery. My lil guy has so many issues that are not related to Chiari that I feel the only way that I will go for surgery is if he were ever to start experiencing any type of pain. I'm sure my response doesn't give you any answers or solutions to your issues but I thought it'd be cool to reach out to another Chiarian with swallowing problems. I pray for you to feel better and always stay strong and positive.
Barbara, I would reconsider the surgery option. Hydrocephalus is scary and damaging plus his daily vomiting and balance problems. I know you don't want to go the route but fixing the Chiari and putting the brain back where it is supposed to go would alleviate a lot of his symptoms. Chiari is nasty and I saw what it did and still does to my son who is now 5. My son Luca was like a brand new kid after surgery. I mean you could even tell in his facial expression right after surgery that it helped. He always looked like he had a headache face...he did always have a headache. He still has a hyper gag reflex and random vomiting but all of his other symptoms improved immediately. The fact that you have to puree his food and he still vomits is not good. Please don't take this to sound mean or judgy, I can just tell you from experience how wonderful surgery can be for Chiari and hydrocephalus. Your only in the hospital a couple days and kids are so resilient. Luca took it all like a champ! I am always willing to talk if you need by phone, just let me know.
