Hi, I’m new here and still not sure if I even belong as I’m not officially diagnosed. I had an MRI for vertigo 5 months ago and was diagnosed with vestibular migraine (I’ve been having vertigo/dizzy issues for years). I just got a hard copy of the report yesterday and was surprised to see an incidental finding of chiari malformation that was stable from a prior study (surprised because no mention of either was ever made and I was told all is normal). Since it was incidental and my doctor said all is fine I’m not sure what to do.
3-4 years ago I had several tests because of oro-pharyngeal dysphasia and no cause was ever found so I’m just living with it as best as I can, which really isn’t easy at times.
My biggest problem is with liquids and initiating the swallow, also swallowing on command. It is very hard for me to swallow if someone is around me which makes it hard to eat with others. Is this kind of swallowing issue a symptom of chiari? If anyone else has problems swallowing can you share your stories with me?
My other symptom is very hard to describe but I’ll do my best. I get a slight squeezing sensation in upper chest/esophagus which causes me to intake air (kind of like a hiccup). Then I can almost feel the upper esophageal flap open and this causes me to make a hiccup sound (but I’m not hiccupping). The very disturbing part about this is that when it happens it feels kind of like a strong reflex/echo in my throat area and it almost causes me to gag, as if the reflex is so strong it hits my gag reflex.
This is something that is so difficult to explain and not one doctor I have ever talked to about it has ever even heard of it nor can I find anyone else who has this. Doctors look at me like I’m loony. Have any of you ever heard of something like this or experienced it? I don’t know if it’s even related to Chiari.
I have had swallowing issues with chiari. It was not all the time and mostly with liquids. A number of times liquids would come out of my nose. It’s like my tongue went to swallow, but my throat didn’t, which forced the liquid up and out my nose. I also had a lot of trouble with soup and gave up eating it. I think it was something related to the combination of liquid and solid. I often had to really concentrate on swallowing to make it happen. It was very frustrating.
I think I experienced the hiccup issue as well, although yours sounds more pronounced.
Both for me were definitely chiari related. I had decompression surgery about a year and a half ago and both have improved greatly. The swallowing only happens every once in a while and not as bad. I saw two neurosurgeons before I had surgery. One said that swallowing difficulty doesn’t happen in adult chiari patients, only pediatric cases. The other said it was a chiari issue.
My recently diagnosed son has intermittent dysphagia. He may choke on a piece of food but then the gagging continues for hours. It sounds like he’s retching, but he’s not bringing anything up.
Pretty much everything I’ve read so far indicates dysphagia is symptomatic of chiari. You may want to see a dietitian and request a barium swallow and video test.
You first and foremost are doing very well at describing your symptoms and you are correct in your statement that doctors seem to not know about your issues or Chiari. I found help post op from a doctor of internal medicine (specialize more in adult health issues.) General family physicians became frustrated with me and finally denied me care. I began with an internal medicine doctor and they see a lot of these circumstances.
A CINE MRI can detect in greater detail the significance of the Chiari and whether or not you have flow voids. Stress to the doctor that you most certainly want to protect your ability to swallow. I had no response to a swab being poked at the back of my throat and am living with a gag reflex that comes and goes. However, it is why a neurosurgeon took notice and initially became concerned.
Surgery improves our symptoms but will not resolve all; I found my Chiari decompression surgery painful and difficult to go through but well worth the improvement I achieved.
Know that you are not crazy, not alone, and you are able to get help it just takes perseverance and insistence.
I’m pretty sure intermittent dysphagia can be an issue all it’s own as well, I have a friend who has something wrong with the Schatzki’s rings in the esophagus (the name of what it is officially escapes me right now). Basically the ring goes into spasm and creates problems. In that case there aren’t any other issues like Chiari as a foundational issue, the dysphagia is the issue. Then there’s the kind of dysphagia that can be linked to an underlying condition. Below is a basic summary of esophageal dysphagia but you can find all kinds of info with a quick internet search of “intermitten dysphagia”
Esophageal dysphagia is caused by disordered peristaltic motility or conditions that obstruct the flow of a food bolus through the esophagus into the stomach. Achalasia and scleroderma are the leading motility disorders, while carcinomas, strictures and Schatzki’s rings are the most common obstructive lesions.
Hi Jamey. I am very sorry to hear about the problems you are having. I definitely feel your pain. I was recently diagnosed with type three spastic achalasia. They are currently assuming that it is my Chiari, Syringomyelia and Syringobulbia that is causing the problem. What the diagnosis is my esophagus is failing, and in two places, at the top and at the bottom where the esophagus attaches to the stomach. I have problems with liquids and solids that have lot’s of mass or density, like bread. I have lost over 20lbs.in six to eight months.
I’m experiencing these exact symptoms now. I also went through this about 2 1/2 to 3 years ago and they said it was severe GERD/acid reflux and gastritis. I had a barium swallow that was normal. But like you, my issue is initiating the swallow. I was ok for about 2 years and then late summer my symptoms came back. I can’t initiate a swallow and now I’m on a soft diet. Also following an acids reflux diet. I get a tight pressure squeezing sensation that makes it hard to get a deep breath in, very uncomfortable. I went to ENT ahead a nasal laryngeal scope and then endoscopy done last week by GI. Did speech therapy and I’m just at a loss bc I’m still having trouble swallowing and I just don’t see this going away with taking a PPI and following a reflux diet. I guesss my next plan is to get another MRI and see if anything has changed since my last one about a year ago.
Beaches - sorry to hear you are also suffering with these swallowing issues. I had the barium swallow study too and it showed a couple of quirks (delay in swallowing reflex kicking in and something else that I don’t remember). The doctor tested me for myasthena gravis (don’t know how to spell that) and Parkinson’s, negative for both and I was scoped and shown to have very slight reflux but he didn’t think that was the cause of my problems. Since everything was “normal” they wrote it off to anxiety which irritates me to no end. I am still suffering after almost 4 years of this, it has been non-stop. I tried Nexium or something similar and it gave me the weird side effect of hearburn.
Have you been officially diagnosed with Chiari and/or had surgery for it?
Out of all my symptoms this is one of the most distressing because eating with others is such a routine part of life and I just can’t do it. And this other squeezing thing that happens in my upper chest is terrible because it causes me to nearly vomit up to 100 or so times a day. Ugh!!!
Janey… I’ve been down the road of having my symptoms dismissed as anxiety. I can truly relate and I’m so sorry you ar dealing with this too. I think every single person with Chiari gets dismissed for one symptom or another by a doctor bc unfortunately many doctors still lack the knowledge of Chiari and how it effects our bodies. I had a barium swallow study 3 years ago that was normal, but my swallowing issue was only intermittent then. Since this past August the swallowing issue occurs with every meal, I truly empathize with you bc I get tearful about not going to restaurants or having to order mashed potatoes or soft foods and feeling embarrassed while everyone else is enjoying their steak or chicken meals etc. Eating in front of others is so hard for me… which is sad bc going out to eat used to be one of my favorite things to do! I was officially diagnosed with Chiari in August of 2015 with a 9mm herniation and no syrinx. I have not had the surergy as I’m quite scared to get it… however since this swallowing issue is just taking over my life, with no signs of letting up this time, I think I may have to strongly consider getting it. I agree with you, this is the one symptom that is completely interfering with quality of life. I can handle the others, but this I have to say is the worst, for me … I plan to get another MRI and follow up with my NS. And another follow up with my ENT for a new barium swallow since my swallowing is a consistent issue now. Have you have a manometry test done by your GI? Since you said you are vomiting, that potentially sounds like a motility issue, there is one called achalasia. Since Chiari effects ours muscles, our swallowing takes many muscles to work… and the esophagus is one long smooth muscle. To me, it seems like a no brainer that Chiari can cause motility issues, but many doctors like to just blame anxiety bc it’s easier. They don’t understand many of us have the anxiety bc of the symptoms, not the other way around! I’ll keep you posted with my tests and if I get any news, I’ll come back to update you. Hopefully soon we can at least get some relief! Hugs to you!
I never had a manometry test, my GI doctor suggested it at one point (the 24 hour test) but my next visit he said he didn’t think it would show anything and that was the end of it.
I should clarify, I’m not actually vomiting, it just feels like I will. There is some spontaneous reflex or something, not sure how to explain it, that jolts my throat/esophagus area and the end result is this feeling that my gag reflex is being hit. No doctor I have ever explained this to has heard of it, I can’t find a name for it and I can’t find anyone who knows what it is. They probably think it is “anxiety.”
And I so understand what you say that they don’t get we have anxiety because of the symptoms not the other way around.
Good luck with your tests and doctor visits. I hope you are able to get some answers and satisfaction. Making a decision as to whether or not to go ahead with surgery isn’t easy. It’s a major surgery and a major decision and from what I read the recovery isn’t easy. I’m not sure that I could go through with it though I know when I am at my worst I say I’m willing to try just about anything to get better.
I totally understand what you mean about the gag reflex. Mine seems to feel worse when I’m sitting down for too long or driving, maybe bc my spine is compressed and less room back there. Idk it’s so very odd and I know that and the swallowing issues are related to the Chiari. Thank you so much and I wish you the best as well… I’ll keep you posted if I get any helpful info
Has anyone experienced extreme jaw pain? My 12 yrs old daughter has been diagnosed with chiari 1 malformation and the cyst in her spine. Her neurosurgeon says she needs the surgery but she has to lose 12 lbs before he will do it. Recently she has been complaining of extreme right sided jaw pain. I don’t know if this is something to do with the chiari or if she needsaid to see a different Dr or dentist.
It’s so scary not being able to swallow. I have the same problem intermittently but neurosurgeon says “it’s not a symptom of chiari” so of course once again I left thinking I’m just crazy. I went to the chiari walk in 2019 & found a few people that couldn’t even swallow their phlegm & after surgery they could swallow again. I dont think drs really know about chiari or its symptoms. I’ve been to 4 neurosurgeon & they all have something different to say. I haven’t done the surgery for this reason but I’m suffering & scared.
… I plan to get another MRI and follow up with my NS. And another follow up with my ENT for a new barium swallow since my swallowing is a consistent issue now. Have you have a manometry test done by your GI? Since you said you are vomiting, that potentially sounds like a motility issue, there is one called achalasia. Since Chiari effects ours muscles, our swallowing takes many muscles to work… and the esophagus is one long smooth muscle. To me, it seems like a no brainer that Chiari can cause motility issues, but many doctors like to just blame anxiety bc it’s easier. They don’t understand many of us have the anxiety bc of the symptoms, not the other way around! I’ll keep you posted with my tests and if I get any news, I’ll come back to update you. Hopefully soon we can at least get some relief! Hugs to you!